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Sjogrens Topics => Living With Sjogren's => Topic started by: kimberly64 on March 10, 2014, 01:38:27 PM

Title: Taste Loss please help
Post by: kimberly64 on March 10, 2014, 01:38:27 PM
One last plea for someone who has a similar.  I have lost all salivary gland function.  I have lost all taste except for a day or two a week I may taste one thing for a few seconds,  I have lost most smell.  My nose and eyes are dried up.  I take Evoxac 3 x day and prednisone nothiing is heping for a month now.  Can anyone relate to this?  PLEASE help me! Has anyone been at this point an recovered? 

Title: Re: Taste Loss please help
Post by: Tantalus on March 10, 2014, 01:46:26 PM
Hi Kimberly,

My taste has been disrupted only a small amount so I can't offer any suggestions there. A number of people on the forum experience what you describe or write about foul tastes in their mouths.  I'm sure some of them will respond soon.

You note that you are on Evoxac and prednisone.  Have you been diagnosed with Sjogren's?  Any chances of going on some of the other meds that some of us find helpful in slowing things down?

I am on plaquenil and recently added methotrexate for inflammatory arthritis related to the Sjogren's and would recommend anyone able to take the plaquenil to give it a try.  (There are some potential side effects that the docs test for when taking any of these drugs.)

Hang in there, you aren't alone.

Title: Re: Taste Loss please help
Post by: finallyadx on March 10, 2014, 02:35:54 PM
kimberly - so sorry to hear about your taste and smell - that is just horrible.  I have lost taste and smell at times but it comes back for me.  I am not on salagen or evoxac ? spelling yet.  I have an appt with an ENT in a week - I am hoping he can shed some light on many of my symptoms and issues and helo with some relief. 

Do you see an ENT?  They may be able to help you figure out what is going on and offer some advice/potential treatment options.

I am sure some other members will post who can relate totally to you and offer some sound advice.

I am sending positive thoughts your way and hoping there is some resolution for you soon.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 10, 2014, 02:43:19 PM
When you say you lost it for how long?  I HAVE ZERO QUALITY OF LIFE.  I cant talk very well du to dry all the way down my lungs.  I am not wanting to live like this as I am burden to my family and cannot function. Everyone says it takes time for the medicine to work but shouldnt I get something if it was going to work.  I cant live like this.
Title: Re: Taste Loss please help
Post by: Tivia on March 10, 2014, 05:07:36 PM
Hi hun, you say you are on exovac and pred, how long have you been on them? Also has the doctor said anything about Plaquenil? I know some doctors think it does nothing for dryness, but I disagree, I think it helps in some people. Things do take a while to start working, took me a few months before exovac took hold, and some days nothing helps. There are a few things to consider here, my dryness is amplified if my thyroid is acting up at the same time, also perimenopause can start in the 30s and it can bring on dryness also that would compound the sjogrens.

Ok another thing you can try make sure you have humidifiers going at home, when I first started with all this I had a huge humidifier going 24/7 just to breath. In the start it really feels like smothering or desiccating to death I know. I had many a panic attack in the beginning. I tend to not use the humidifier so much anymore, mainly really harsh winter when the heat is going full blast. I also used a lot of Ocean nasal saline, and neti pots, some days I would boil water just to stand by the pot and feel the moisture.

Try to hang in there, I know this sounds like bunk but you do adjust to the feeling after a while. I thought I was dying many times at first, I would get so mad sad and depressed  I didnt want to go on, but then I started to get used to how the new me was. I am not too troubled with the dryness now mainly my eyes, but I just found a way of adjusting for me. Everyone is different, now is the time for you to try things to see what makes you feel more comfortable. I was so dry in the start I was guzzling water like a maniac. That actually made some worse problems. I find a little sip of flavored water swished around in the mouth then swallowed does better than going water crazy.

The taste and smell come and go for me, some days I can be eating a strawberry and it will taste like some kind of meat yuck. I get all kinds of weird mixed scents taste and signals lol 
Title: Re: Taste Loss please help
Post by: drylady on March 10, 2014, 05:20:47 PM
Hi Kimberly. At one point I loss most sense of smell and regained a lot of it after being on Plaquenil. Plaquenil fortunately also improved my dryness, especially eyes. It does take time to kick in though.
Title: Re: Taste Loss please help
Post by: Tivia on March 10, 2014, 05:36:01 PM
Hi Kimberly. At one point I loss most sense of smell and regained a lot of it after being on Plaquenil. Plaquenil fortunately also improved my dryness, especially eyes. It does take time to kick in though.

I agree if you are to the point where you can taste or smell ask the doc to start Plaq. Now some docs wont do it cause they say it does nothing for dryness. If you doc is dismissive and unconcerned find a new sjogrens doctor. Seriously you are putting your life in their hands,  find one that knows his butt from a ...well nvm lol

It took a lot to convince my doctor that something was wrong and by then I was pretty far along with my eyes, and I had no sweat very little saliva, and my skin had no lipids. I looked like a dried up orange peel with flaming red eyes.
Title: Re: Taste Loss please help
Post by: angeldancer on March 10, 2014, 11:22:45 PM
At this point it goes away most of the time and then comes back.  I enjoy my brief moment of enjoying something decent to eat that is not laden with sugar.  I was told that EnT's are better at figuring out what to do and I will be going to one soon.  Will have to pay a lot to see one.  Trying to change my insurance that has put me in the poor house but gotta go to get the help needed.
Title: Re: Taste Loss please help
Post by: stillinshockwithsjogrens on March 11, 2014, 12:51:15 AM
All my doctors tought I was " depressed" when I told them about my flares/symptoms and told me to try antidepressants!  I nearly went crazy during the period of time trying to get dx'd.  I told them, I couldn't smell, taste.  I developed tinnitis and scratchy eyes. A cat scan and brain MRI proved nothing.  So I was sent along to an allergist.  Yes, I do have allergies, but I have the White Elephant in the room no one saw.  My ENT diagnosed Sjogrens, finally, a few years ago.

The taste and smell comes and goes.  I had years of super-sensitive sense of taste/smell, now not so much; at times, barely any at all.  It depressed me quite a bit.  But not now, I'm rolling with the punches and trying to keep my mind at peace.  Allergic to Plaquinel, which seemed to help everything.  Now settle for Aleve.
Title: Re: Taste Loss please help
Post by: cccourt1942 on March 11, 2014, 08:28:56 AM
I have said I don't smell or taste.  But reading your statement Kim..."a day or two a week"...made me realize I DO smell and DO taste.  Infrequently.  What you reminded me of is WHAT I eat.  I eat stuff I CAN taste...even if it is lemon yogurt.  I drank black coffee until about 10 or 15 years ago.  I started adding creamer...then those wonderful flavored creamers came along.  I don't drink "coffee" anymore, I drink flavoring WITH coffee.  I taste that.  Last night I was with a friend eating Mexican food...and I even commented that a lot of people thought that restaurant served food too bland.  Geez.  I said it out loud and it dawned on me it didn't matter to me as I couldn't smell it.  But when it comes to tasting, I do have a few ingredients in enchiladas or quesadillas which I can taste.  If I am in that restaurant and have no appetite, I will have tortilla soup.  A body has to eat!! 

Your comment reminded me of the various types of foods I choose.  I realized  I eat a lot of squashes:  butternut, acorn, etc.    I do that as I add butter and xylitol (a little splenda/brown sugar mix too) because I taste the sweet.  Of course, we can't eat sweet anymore.   :)  I guess what I am saying is try some things you have successfully "tasted" and expand on them.  I seldom eat meat.  But I love gumbo.  Good thing I live in SE Texas.  Oh ...and speaking of Texas-from a very early age you understand (and accept) allergies are a way of life.  When you grow up with chronic congestion and horrid sinus drainage, you become accustomed to not tasting and smelling.  Maybe why we crave bbq sauce and jalepenos down here. 

Also....your age:  are you in menopause now?  That can play havoc with your body in so many ways.  If you are, this too shall pass.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 12, 2014, 07:49:38 AM
I am really having a hard time.  Evoxac is not creating more saliva.  My nose is dry and eyes.  I take Restasis.  I swallow nothing to lubricate throat.  I cant taste anything except snippets on occassion.  Is anyone else this bad?  I JUST FEEL SO HOPELES.
Title: Re: Taste Loss please help
Post by: Gingersnap on March 12, 2014, 01:20:00 PM
I wonder if a salivary gland biopsy might help determine exactly what is going on. Have any of your Dr's suggested that at all? Such a sudden complete shutdown of glandular function seems pretty rare and I would want to find the cause. Did your body attack the glands (autoimmune) or did they fail through some other cause...I would want to know and maybe knowing would give you a better chance to reverse it. I read that you are on prednisone and it isn't helping so I wonder about the autoimmune. For me anyway, I can be so dry in a flare but when I go on high doses of steroids I
have a mouthful of saliva, the gland function becomes noticeably better. But That may not be the case for everyone I'm sure....I am really sorry you are going through this, my heart goes out to you as I can only imagine how bad it must be to have something so drastic like this happen so suddenly. I do have dryness but it didn't come on suddenly like yours. Evoxac works for me but my nose is really dry, I usually keep a little Vaseline applied to feel comfortable. My eyes are still really dry even with restasis but they are unbearably dry without it and low-dose prednisone. I hope that the Dr's figure out what's going on and you get some relief soon. ((Hugs))
Title: Re: Taste Loss please help
Post by: kimberly64 on March 12, 2014, 03:01:49 PM
I couldnt tolorate high doses of steroids so they have me on a lower taper and nothing is happening.  This started months ago and I just started the taper last month.  I never got past day two on steroids before at high doses and  I have been on the Evoxac three weeks. I tested negative on blood test but since everything dried up and the eye test was so low they said Sjogrens for sure. What else could it be?  I have no quality of life and have almost given up because I cannot see myself even surviving like this and no one has had anything similar happen.  Everyone reponds to the medicine or either they have saliva and no taste or vice versa. I swallow nothing its like a void unless I chew gum to get a little going and it is hard to chew and like paper in consistancy.  I feel unhuman and dont even want to face another day most days.  I try to exercise and I have no moistture in my throat or lungs it feels sufficating.  I wake up feeling like I am choking and sufficating.  I dont have a life and am a burden.  Doctors have not seen an extreme case and look at me with pitty and even disbelief that my symptoms are this bad until they try to palpitate all the glands and nothing happens at all and then they still just say try this doctor or specialist or I dont know.  I have no hope at all of improvement just worsening complications.  My teeth which were white have yellowed horribly in just 5 months and I have broken two in just five montha and they feel hollow and dried out.  I had no warning and no problems prior to this all starting a few months back.  I just dont understand.  I have completely lost hope and really dont want to live like this.
Title: Re: Taste Loss please help
Post by: ohiolady on March 12, 2014, 03:36:16 PM
Do not give up.  You are still taking generic Evoxac and it did not work for me at all.  I was as bad as you describe for a full year.  I ate very little and would drink 3 or 4 ensure a day.  I slowly began to improve.  Have you started on plaquenil?  You need to talk to your doctor  about plaquenil as this may help you.  Try a teaching hospital for care.  They are very thorough.  I go to Cleveland Clinic. 

Also, when I was as bad as you are I took a low dose of ativan to help with the anxiety of all that was going on.  Try to focus on getting through one day at a time instead of how hopeless everything seems.  If we think too much or too far ahead, we can go crazy.

Hang in there!

Title: Re: Taste Loss please help
Post by: Dolly Dimples on March 12, 2014, 04:09:03 PM
KImberly have you tried Salagen, I have dry issues which causes swallowing problems but if Istay on soups , pastas, etc' I can still eat and taste, but  I can deeply sympathize with you. Do you use Oralbalance mouth gel ,toothpastes, etc' for dry mouth.
  I too breathe hot steam in every time I boil kettle or pans. Also I am sure there is some sort of mask one can wear for nights.
   Try googling.   Stay away from air conditioning and fans etc' and keep moist as much as possible.
  I know it isint easy, but stress can cause us to get drier, so try and get some sort of relaxant to help you cope. altho some relaxants are drying so be careful what you choose.
. Push your medical people and dont be be fobbed off, Wish you well, keep posting too.  Hugs Dolly x
Title: Re: Taste Loss please help
Post by: cccourt1942 on March 12, 2014, 05:34:16 PM
I try to exercise and I have no moistture in my throat or lungs it feels sufficating.  I wake up feeling like I am choking and sufficating. 

Kimberly-I exercise (minimally--but I do exercise) and the hardest part of it is not moving my limbs, it's breathing with a closed mouth.  I have put off exercise for days at a time as I dread it so much.  Doing Pilates I can't get the rhythm and tightening my core synced with my inhale/exhale.  I have exercised with such exaggerated inhale----------------exhale for decades.  It's hard.  The only thing harder is moving without exercise.  I relish getting on the treadmill because it is a reminder I can still walk.  But walking without hearty inhale/exhale is hard.  I am taking a week long trip soon and must keep moving  for THAT.

The only difference in me and you is I was lucky enough to find the right medication and accoutrements for my conditions easily.  I was miserable for well over 20 years....and lived from day to day with salivary gland problems constantly for 6 years.  I was convinced I was old.  Breathing, walking, working part time, and talking were so exhausting I barely made it from day to day much less week to week.  I felt like you.  I thought "if this is old age, they can have it."  And then I looked at my grandchildren and gutted up. 

There is barely a place on my body which is not sensitive to touch or sometimes AIR bothers me.  I am not talking about hurting...I am saying sensitive.  An irritation.  A bother.  My toenails hurt.  I know..that is impossible.  But they do.  My wrists ache and my eyes burn.  My head itches and my legs burn.  I live alone...and it is hard.  I dread going to the grocery store because nothing looks good to eat. 

I do have saliva now.  I have it almost continuously all day/night now.  My aching is handled by Celebrex.  I have minor headaches for the first time in years...but manageable.  Everyone on this site is miserable in one way or another.  We all put one foot in front of the other for one or more reasons.   Let us be your reason.  We want to see you taken care of properly. We want you to get to another level.  We want you to find relief.  We are vested here.  You have people here who care.  Please remember that.
Title: Re: Taste Loss please help
Post by: 4Kids on March 13, 2014, 11:57:37 AM
I had a rough time for a while too, probably six months or so. My mouth had a terrible case of thrush and it burned to eat. My taste buds were largely gone. The good news is that if you can get your mouth normalized your taste buds will come back as you get new ones in 3 days or so. Try salagen if Evoxac is not working. It took a good 4 or 5 months for Salagen to work for me,and it doesn't work for me like it does for everyone else but i can live with it. I use a Xylimelt at night before sleeping because if not I couldn't sleep. In your case methotrexate might work for you, that might be something to try. Most likely you will come down and level out but until then it is an awful feeling.

I came on here similarly although perhaps not so severe. My flare in 11 came out of nowhere it felt like. It took me six months to feel functional and a year to feel sort of normal. It could very well happen, and I hope it does.

Hang in there. Do you have a list of things that may help? Like Nasogel for your nose, good eye drops, the restatis, the biotherm gel?  I wish I could recommend something for your poor lungs but I can't.  They make a spray saliva called NuMoisyn I think and I had to carry it with me for about three months so I could breathe without choking and do things like walk with my kids around the block, but I did and it works. Even now I have Saliva Sure and Excel mints with me at all moments and back up meds everywhere.

There is awful anxiety associated with being that ill. If they could help you with that, it would be good. Remember, there is a very high likelihood you will get back to a normal level of functioning, even if it is your new normal.

Title: Re: Taste Loss please help
Post by: kimberly64 on March 14, 2014, 07:00:09 AM
My sorrow is overwhelming.  I am assuming peope with gland shut down to my extent with loss of senses are not here as they gave up as well  I wish I had hope.
Title: Re: Taste Loss please help
Post by: cccourt1942 on March 14, 2014, 07:29:11 AM
Kimberly:  I "think" my glands are atrophied.  I see my ENT next week.  I don't know about my  under the tongue glands..never can recall the name of those...lingual?  something lingual.  But I am here...with zero saliva production from sub mandibular and parotid.  I haven't had that medically diagnosed.  All I can say about me..there is no saliva in my oral cavity which isn't produced by medication or xylimelts.  It's miserable.  Yesterday I received an important phone call...many queries and replies.  After about 15 minutes, the hoarseness creeped in...was sipping water...and it occurred about 1/2 hour after my mid-day dose.  I apologized for my voice quality.  I have known the caller for about 7 years.  He inquired as to the problem... I just couldn't go into it.

Further, I worked the first three months this school year and could barely do speech therapy.  I was not diagnosed until after then.  I do contract work for my local ISD.  I have done this since my retirement.  Now I realize I cannot take those periodic assignments any longer.  I knew it was getting harder and harder.  I thought it was interrupted sleep.   Sleep was interrupted  by the arid mouth which kept me (literally) from swallowing, breathing, returning to sleep.  It was a vicious cycle.  At least  I sleep now...well maybe 4 to 5 nights a week.  That is wonderful to me.

I know you are looking at me and thinking I am old and have lived my life.  I have.  But I fought all these symptoms for 26 years.  I handled the aches, the eyes, the decreased saliva (though I didn't know that is what it was)--6 years of sialadenitis so bad the pain would take me to my knees.  NO explanation except "quite common condition."  I have known exactly two people who have each had ONE incident in their lives.  The last 5 to 7 years my husband was alive he was irritated I no voice strength to talk/visit with him in the evenings.  I would put myself on vocal rest.  At that time I was in my late 50s.  Not so old when I look back now.  My quality of life was altered many years ago. 

Those of us with the same symptomatology as you are here.  We don't like our conditions and limitations.  I keep getting up each day and putting one foot in front of the other whether I like where I am going or not.  I hope you can find some glimmer of hope and joy in your day today. 
Title: Re: Taste Loss please help
Post by: 4Kids on March 14, 2014, 08:00:06 AM
Kimberley, please try and tell yourself you do have a chance to recover some function. While many, many, many members come on here -- including myself -- in the same spirits you are, most of us do recover a bit or a lot and resume our lives. I myself had no saliva at all before treatment. I was eating hard boiled eggs covered in mayo and choking them down.  I could not chew gum because it just smeared and stuck to my teeth or became like gravel. LIke I said, I had to have spray saliva in order to talk more than a few words.

There is help, and it does take some time to find the mix of things that works for you.

The sorrow is awful. There is a whole grieving process in which you process your emotions to accept the new life you have been given and have very little choice but to accept. There are teeny tiny little steps you may take forward, and I hope you do, and every time something positive happens, cling to it and celebrate it.

We are here for you, and although you may not believe it, we have gone through very similar sorrows and we all care about you.

Title: Re: Taste Loss please help
Post by: kimberly64 on March 14, 2014, 11:44:16 AM
Hi all,
I try but no one has lost taste to my extent because of severe shortage of saliva and I dont have good doctors and the ones I do say that I have to learn to live like this.  It has taken a toll on my health because of eating habits and its taken a toll on my family and their life as I am a burden to them and myself. I try to be positive by when medication doesnt change things that kinda diminishes the hope and I am only 49 and really wanted to enjoy a fe more years and now my life is over as I knew it and I dont see improvement only worse things like teeth loss and more problems.  I hate to he like this but.coming here only made me see how bad I really am compared to others who do maage their symptoms and stll have some quality of life.
Title: Re: Taste Loss please help
Post by: Deegee on March 14, 2014, 11:48:31 AM
Kimberly:  I also have no sense of smell or taste.  This has been a problem for about two and 1/2 years. 

 My Dr. is aware of my problem, is very knowledgeable on Sjorgren's , and has suggested that I go to a Taste and Smell Clinic.  We do have one in our area and I am waiting to see if they will take my case, and if my insurance will cover the two or three days of testing involved in getting a diagnosis. 

Currently I am not on any medications, but will be starting Evoxac within a few weeks.

 I stay from all foods acidic and spicy, because they will cause my mouth and tongue to be very sore.  I find that drinking lots of water with meals, and using Ayr gel for my nose will at least give me comfort.  I find myself feeling resentful when someone mentions a smell or a taste, and really miss these senses.
Has anyone on this message board gone thru extensive testing for their loss of taste and smell?

Thanks for posting Kimberly, and I hope you find relief.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 14, 2014, 12:57:10 PM
My doctors said the taste and smell loss are related to everything drying up.  Unless that changes the taste and smell clinic will not help because it is not neurological.  I havent been given hope they will return as I have been on Salagen then switched to evoxac. I have been on one or the other since Feb 1st and nothing is changing.  I am not hopeful as doctors said it should work immediately. Plus I am on prednisone.  On top of eating being a struggle and not to tatse it as well it has basically taken away a big part of being human.  I feel like a freak and I just dont want to face another day like this.  My husband loves me I know, my son is returning from a long deploymnet and  I was healthy when he left anf I cant even cook due to no taste for a party.  I cant even walk my dogs due to know mucus in throat and lungs andI get winded and cant swallow anything. I chew endles gum with a texture like paper or rubber and no taste by it keeps my mouth a little moist other wise my saliva goes to foam and then not one spit drop.  I am not going to survivve ths as it hit me full on advanced in just six months time and has only progressed.  I guess some people are strong with this disease because it takes a gradual course or they are just strong anyway.  I am not and dont reeally want to live like this and be a burden a tomy family as everything has to be done around my symtoms.  I cant eat alone due to choking hazard, I cant drive due do loss of concentration and I dont sleep well and its like the days are agonizing just to get through.  I have gone through 4 straight months of horrible symptoms and have only progressedworse on medication. Hope is gone.
Title: Re: Taste Loss please help
Post by: Gingersnap on March 14, 2014, 01:10:45 PM
Even if you don't resume function you aren't likely to die. unless you are hinting at suicide. With the dramatic life changes you've gone through in such a short period of time I think it would be wise to seek counseling to help you deal with the emotional aspect of this, which is huge. There are probably counselors that specialize in traumatic injury or health problems and how to learn to cope with them and help with your mindset. I really hope that you do seek help as it would be horrible for you to kill yourself. And as hopeless as you feel right now, there is still a chance that it isn't permanent. Please do consider seeking help ((hugs))
Title: Re: Taste Loss please help
Post by: kimberly64 on March 14, 2014, 01:39:19 PM
Does Evoxac really take time to work and things get better? Why do I get snippets of taste some days and zero others?  The snippets are very mute and distorted.  Doctors even treat me like I am the worst case they have seen even a rarity and that adds to  my hopeless feelings. I get counseling and it isnt helpiing, its hard to even sit and
talk for 15 minutes with a counseler without completely loosing my voice or going so dry its unbearable.  The counselor did not recommend medication because he said it would worsen my mouth due to most have a drying affect.
I cant face a grocery store, a long car ride. I have given up everything I loved in my life and I am horribly depressed.  Family has distanced itself because they dont understand the illness or even if its real.  Imagine how that makes you feel.  You have this horrible disease taking all the pleasure out of your life and your family thinks it cant be as bad as all that!  This is why I feel the way I do. How does anyone deal with loss of senses on top of all the other things.  I wish I was  a stronger person in dealing with this but its horribly hard.  So hard.
Title: Re: Taste Loss please help
Post by: ohiolady on March 14, 2014, 02:27:32 PM
Ask your  counselor for some ativan.  It will help you and it is not drying.  Antidepressants are very drying and this is probably what the counselor is referring to.  Kim, you are stronger than you think.  Just try to get through today.

Title: Re: Taste Loss please help
Post by: 4Kids on March 14, 2014, 03:29:18 PM
Salagen does not work right away, it can in some people take up to four months to take effect. This was the case with me. It took probably six months to feel somewhat normal and not require carrying around spray saliva and gel.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 14, 2014, 04:39:26 PM

Please tell me how you cope with complete taste loss.  I have for the first time in my life not wanted to live and I am so scared of my thoughts but I just feel I am just sufferring and not even existing really.  I dont even want to wake up because the days are just too hard  to get through.  I SEE NO HOPE.  :'(
Title: Re: Taste Loss please help
Post by: cccourt1942 on March 14, 2014, 05:14:29 PM
This thread is calling for more soul baring than I am ready for.  But here goes:  my closest friend asks me EVERY time I see her 1) what did people with this used to do?  2) if it's hereditary/genetic, who in it had it in your family?  3) Have you ever heard of this before now? 4) (Ready?) You look better than you have in years.  YOU DON'T LOOK SICK. 5) What do your children say?  6) How did you even know about this?  7) If you saw the ENT and ophthalmologist, why didn't they ever say anything?  ......this can go on and on.  I don't bring this up....I am usually just sipping water incessantly or sometimes I place a xylimelt in my gums, etc.  She is the one that saw me each and every time my parotids would stop up...and grow out of my jaw.  She is the one we once shared our favorite books and knows that until last year I had stopped reading for TWO years.  She is the one who applauded my passion for pilates-DUE TO MY AGE.  Not because my joints hurt!!  AND..her husband is an internist.  (He isn't my doctor.)

I have not even told my son.  My son does not want to hear anything about me.  He loves to call and tell me a joke...or send a fb post with a cartoon.  He likes discussing a great movie or book, but NOTHING personal.  Nothing.  My daughter has heard me comment about light and sound sensitivity since I went thru menopause.  She thinks whatever this strange word is explains  the sensitivities.  She does not "digest" anything else.  We have only discussed this illness once. 

My lifetime friends treat me like I have let "getting old"  beat me.  They want to know nothing nor do they care.  They have their own old age woes.   Most of them still do some type of part-time or full time work.  I am the "weak" one.  The friends who do go to the theater with me, or invite me to meet them for dinner (or breakfast or lunch) avoid the subject with the strange word.  When asked when it would go away, I explained it was an AI Disease, a progressive condition...which I would not die OF but WITH.  I further explained it was all about managing symptoms caused by the disease...and the look is one of glazing over.  So I say very little.  Several will be polite and ask "how are you doing?"  What do I say?  Well "this week I have only stayed in the bathroom all day twice."  Or "I wake up 4 to 5 times a night to pee and have a hard time going back to sleep."  (ACTUALLY..this is soooo much better now that I have been on my meds for three months.  SO MUCH BETTER.)  (ALSO ..if it's bad, I will turn the TV on , pop a xylimelt and let it dissolve, then go back to sleep.)   The friend who has all the questions remembers how many years I would wake up at 3 or 4 a.m. and never go back to sleep...get up..exercise...go to work...and come home and just crash.  No wonder I woke up at 3 and 4.  Before dx the inability to swallow autonomically while sleeping would awaken me gasping for breath.  Drink water, sleep 30 min to an hour, wake up and pee, drink more water...repeat four more times.  I don't have to tell any of you this as ALL of you have lived thru this.

This isn't the first time I have seen this discussion on this forum about how little anyone wants to hear about SjS.  Now then...those of you who have had cancer, I bet you had lots of concern, prayers, attention, support during those times.  This?  Something chronic, life altering, but not the Big C...that is something else.  I have a friend who has had about 6 surgeries on her feet..which started with elective surgery for bunions and hammer toes about 4 years ago.   We have carried her for surgeries, sat during surgeries, taken her home after surgeries, taken her food after surgeries, one of the group drove her to work five days in a row...and stayed with her all day each day.  She has completed all the work..and there is STILL concern about her feet.  And..I am one of them who always asks.  She forgot I told her I found out why by salivary glands had been acting up for 6 years.  Think I will ever discuss it with her again? 

I don't feel as if I am a burden to anyone ...but I would like to be acknowledged.  I am scared.  I have fears.  I have doubts as to what I will do in just a few years.  It's a lot to be alone with in my head.  In fact, being on this forum has helped my state of mind enormously just knowing there are people all over the world who understand this disease and the consequences of same.  I have always been a strong person.   I am beginning to see cracks in the plaster here.  I listen to music less.  I fear losing the music of my life.  To me this signals I am losing interest in not just creature comforts but a habit I 've had as long as I can remember.  I have always had music playing.    My music is off.

Title: Re: Taste Loss please help
Post by: Aquarius on March 14, 2014, 08:27:38 PM
Kim, I don't know if your counselor is a psychiatrist.  If not you must see one.  You are severely depressed and understandably so.  You need meds that alleviate depression and anxiety.  They can enable you to sleep and cope, so that you continue searching for better doctors and effective treatments. 

There are medication cocktails that will not be drying.  There are several people on this forum that have had encouraging results with anti depressants and/or mood stabilizers that did not make them drier or significantly so.  For me they are a life saver in battling the dreaded sicca.     

Stay far far away from Tricyclics (Elavil, Pamelor, etc.) though.  Even 1/4 of a 25 mg Elavil pill will make me extraordinarily dry.  Wellbutrin is also a big no no for me.  For others, it works wonders.  We are all different.  Some have even claimed these meds have alleviated dryness when the depression and anxiety eased.  A good psychiatrist can help you.

There is a risk that when someone feels utterly hopeless and helpless, it limits motivation to keep searching for answers.  You have dealt with this for several months but you are still early on in the process. I am confident there are treatments and doctors that will be positive for you.  You must find them and not give in or give up. 

Last, if you have any inkling what triggered this, you must be 100% open with your doctors.   Embarrassment, regret, fear, and guilt can keep people from being completely forthright.  This may not pertain to you but if you have not shared everything with your doctors, you need to.  It could be a piece of the puzzle that they are missing.  I mean no offense by this paragraph.  If it doesn't apply to you, disregard.   

Some of us including moi 5 years ago, have been at the depths of the dark valley.  We have fought mind numbing dryness, poor sleep and appetite, severe depression, lack of hope, and changes that we never expected.  Such is life. But improvement did happen.  Please take to heart and really pursue the many good suggestions and ideas that others have offered.   

We care, we do get it, and we want you feeling better.  But you must decide to stay in the game.   Keep posting and let us know how you are doing.   Big virtual hug to you; sending healing thoughts for a breakthrough.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 15, 2014, 04:49:17 AM
Thank you for sharing and caring. The loss of ones senses is just too much to bear on top of everything else this incidious disease has to offer.when medication fails you there is no hpe. Doctors are at a loss with this disease and family doesnt understand or even wants to hear it.  I thought maybe someone would be in my shoes and got better but no one really has complete taste loss or saliva loss to my extent as well as dry sinuses, eyes. throat, intestinal track, skin..all in six month and I did nothing to trigger this!  it just happend overnight living my normal everyday lwanted so much to believe it can be better but I am not seeing hope for my extreme situation ESPECIALLY when it seems to be so extreme doctors are doughtful its that bad, your own family and yet your are suffering and being looked at like you are lying or blowing it outof perfortion.  Its okay I have  come to terms with the fact that my life is over, this was it, there is no cure as doctors want to say.  I need to give my family the freedom to live their life without my burdens. Everyone has been so kind and thank you.  I hope everyone continues to improve and manage their symptoms.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 16, 2014, 06:36:29 AM
Are you still out there?? I sent you a private message with some questions..
Title: Re: Taste Loss please help
Post by: sassytoo on March 16, 2014, 12:15:40 PM
Hi Kim- I lost my sense of smell years ago. I haven't smelt one thing in years. I hate it also. My taste buds have also gone way down. I can't taste a lot of things. It is depressing. I am not on anything (medicine) right now as the same with you, it didn't work so what's the use of taking it. I am now set up to see an arthritis dr. again (in May) . I haven't seen one in years as nothing worked so why pay the money to go see one.
My lung Dr. wants me to go again as he is really worried that my sjogrens has really destroyed other parts of my body, (lungs, kidneys, etc) .
I am no help to you but wanted to post that you aren't the only one. Hugs. Elaine
Title: Re: Taste Loss please help
Post by: kimberly64 on March 16, 2014, 12:38:21 PM
I am so afraid of lung involvement because i have no sinus mucus or throat and when I cough or sneeze nothings is there.  I try to walk my 2 golden retrievers and get winded quickly.
Just seven months ago I was bike riding, swimming and walking like crazy. Doctors say all the extraglandular involvement is rare but I have severe glandular involvement.  Thanks for posting.  I hope you will feel better soon.
Title: Re: Taste Loss please help
Post by: Tantalus on March 16, 2014, 07:23:36 PM

I think a lot of us have questioned at times how we can live with these symptoms.  You should tell your doctors immediately how your current physical condition is affecting you emotionally and tell them you need their help.  A number of us are or have been on antidepressants as these feelings can be situational as well as just plain old present as a part of autoimmune diseases.

It took me a long time to start feeling better physically but antidepressants helped me immensely.

Any chance you can call one of them Monday?


Title: Re: Taste Loss please help
Post by: LucyD on March 16, 2014, 07:39:53 PM

I have periods of several weeks where I can barely taste anything and can't smell, but then it gets better.

For reasons other than the Sjogren's (and in addition to it) I have felt VERY depressed during periods in my life, one of them being about a year ago. I just didn't want to live the way I was living. It took some heavy-duty twice-a-week therapy to pull out of it.

You sound very depressed and it is nothing to be ashamed of. Please get in touch with your counselor and your doctor. There is help and it gets better. This disease is tough, very tough.

And as cccourt mentioned, I think it is so difficult when family members and friends just don't want to know the details. It would help so much if they would just try to understand how difficult it is to push ourselves to try to keep up with other "normal" people and to understand how tired we are and how hard it is to deal with the symptoms sometimes. My daughter is the same. She doesn't want to know what is going on. I don't know - maybe it scares her. I pretty much keep it to myself, but occasionally, I am honest and just say I am in more pain or I am very tired. My extended family - brothers and sisters - I think because I have had this for so many years before diagnosis, just think I am wacko because I am tired all of the time. Too bad for them - I deserve to treat myself well.

Kimberly, you are NOT a burden to your family and they love you. Please just try to go with it right now and reach out for help.

Sending much love and many hugs.

Title: Re: Taste Loss please help
Post by: Tivia on March 16, 2014, 09:58:05 PM
Kim you have only been on the meds since February they can take some time to start working esp with a severe case. I understand everyone is different and some people can handle the dryness but not the other stuff. You sound a lot like me, I cannot handle the suffocating dryness, I know what it feels like. You are going to have to improvise for a while to give the meds time. Humidifiers, warm steam,netti pot, ocean nasal saline, eat moist foods, apples and applesauce, veggies that have a lot of water content, dont eat dry stuff like crackers breads etc. Use biotene mouth spray or something like it, mouthkote if you can get it. And talk to the doctor about starting Plaquenil if you havent.

Yes hun you have severe drying, I went through a terrible dry spell at the start it hit me fast and pretty extreme. I wanted to die I know how you feel but trust me things calm down you do adjust. It does take time, and it is frustrating esp when your doctors are nobs. But you have to have hope, this stuff can wax and wane, you cant give up because things change. I sought out a cognitive behavior therapist to help me through this, it probably saved my life. I highly recommend you find a CBT that you can have a rapport with and trust. It really will help if you are willing to be honest, and open with them, and yourself. You can adapt Kim, there may not be a cure, but you can live a normal life span with sjogrens. And monitoring and treatments can make it an easier thing to deal with.

Title: Re: Taste Loss please help
Post by: kimberly64 on March 17, 2014, 08:44:55 AM
I dont see how I will live through this .  Its to severe.  I try to have hope but nothing helps me.
Title: Re: Taste Loss please help
Post by: Tivia on March 18, 2014, 10:57:34 AM
Kim I think it bears repeating, this disease has relapses and remissions, progresses and stalls. I am starting into a flare/progress atm, lungs throat lips sinuses are pretty much dried up, while the glands in my mouth are forcing saliva from the meds. Its a very unpleasant sensation to feel my mouth not so dry but everything else is terrible. And to make matters worse I have other problems such as severe GERD and ulcers that because my organs are dry the acid is actually burning my tissues. But there is still hope that its just a flare and will calm down. I know the panicked feeling that can take over and build to an extreme, but we have to calm down and breathe. You have a family, they care even if they cant understand what it feels like to be you.

I well know the feeling of it, and I also know our minds can be our biggest detriment to our well being.  You have been taking the meds since February its not even the end of March give it some time. In the meantime take your mind off the dry as much as you can by doing other things and relaxing. Do not get drastic and make a permanent decision over a problem that will most likely come and go over time. Sending you hugs, and hope.
Title: Re: Taste Loss please help
Post by: stillinshockwithsjogrens on March 19, 2014, 03:52:36 AM
Kim, I'm with you.  I've been there, the same feelings, etc.  I feel for you!  No one understands unless they've been there, including family.

I'm going to take a hard nose approach and tell you that you absolutely need something like lorazepam or clonazepam to calm you.  They're not antidepressants, for antidepressants will dry you too much.

You need them.  Nothing to be ashamed about.  You could be in a flare and part of getting out of the flare is to be in a calmer state of mind.  YOu have absolutely nothing to  lose by trying them.  I know, I've been there, have tried the meds and yes, ended up getting out of my flare after a while.

Just do it! Hugs!!!
Title: Re: Taste Loss please help
Post by: kimberly64 on March 19, 2014, 07:31:19 AM
How do you get a Rheumotologist to treat with Panquenil if you test negative but you know you have it and dont want a lip biopsy.  My ENT cant prescribe this medicine but knows this is Sjogrens due to eye, sinus and severe mouth problems and taste and smell issues.  I dont want to go through a lip biopsy because I have heard it can cause nerve damage and they are painful and I am under enough stress and it could stil be negative as well but you still have the disease.  I went to a rheumy last month who was very upsetting in his beside manner, I know I cant go back to this person to get this medicine without a lip biopsy right? I do not have fatigue or pain with this disease yet just the severe drying that is why the rheumy that I was told to go to for further treatment treated me horribly.  I became very depressed after seeing this doctor and really wanted a recourse of some sort as did my husband.  He should not be treating patients with chronic illness.  He was horrible.  My ent is trying to find me another practice.
Title: Re: Taste Loss please help
Post by: Tantalus on March 19, 2014, 08:18:20 AM

Some doctors will treat with plaquenil even when the blood tests and lip biopsies are negative.  Are you in a more urban or more rural area?  Does the ENT know how urgent it is for you to be seen again?

Title: Re: Taste Loss please help
Post by: ARJ on March 19, 2014, 02:52:59 PM
Kim - Don't give up hope. Your friends and family want you to be well - you have so much to live for! I know it's difficult to see and I know I'm not in your situation. But I see the desperation in your posts and it makes me worried. There are alternatives to western medicine. Have you looked into the link between diet/lifestyle and autoimmune conditions? I've learned a lot about it on the internet - stuff no traditional western doctor will even consider. Try searching YouTube, even, for information about the autoimmune protocol, paleo diet, vegan diet, gluten-free diet, staying away from nightshades, and alkaline vs. acidic foods. A little exercise goes a long way. When you're feeling stressed out, get up and move as much as you can and take your mind off of what's going on. Our body has the ability to heal itself, and we need to provide both the right physical and mental environments. Believe in yourself. I also find inspiration and hope from people such as Kris Carr, Gabrielle Bernstein, Deepak Chopra, Andrew Weil, Dr. Oz, Marianne Williamson, even Oprah Winfrey. You can YouTube all of those people and listen to their thoughts. I hope you find a way to stay positive through your pain. Know you're not alone! We all have felt the way you're feeling, but please know that you are not a burden and that you have a beautiful soul that's just having to learn some lessons right now.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 20, 2014, 05:28:06 AM
Is planquenil an absolute must to stand a chance of a life with this disease?  I only have the severe drying of mouth, eyes, nose, throat, No medicine, prednisone and evoxac is really helping much and I tested negative and a rheumy will only treat with a positive liip biopsy right of which I have not had yet.  I am scared to have this, why is my blood work negative when I have severe drying?  Does anyone understand this disease?  I have lost most of my taste and have diminished smell for over 5 monthss.  I just feel so hopeless with only one good doctor who cant prescribe the front line drugs but at least he is caring.  Can  a PCP prescribe planquenil?  The rheumy I went to dismissed me based on bloodwork dispite the severity of my saliva loss and senses loss even said it coulld be caused by something other than Sjogrens but couldnt say what.
Title: Re: Taste Loss please help
Post by: Tantalus on March 20, 2014, 06:10:40 AM
I think the question is WILL she or he prescribe plaquenil--any practitioner with prescription authority may prescribe it as I suspect your ENT may.  I am seronegative AND with a negative lip biopsy and am on it.  I was on it for something else before the SS, but was told the rheumatologist would have put me on it if I hadn't been.

It also isn't the only medicine.  Some, for example take methotrexate.  Others take the biologics when the "first line" meds don't work well.

It is so hard but try to reach out to your docs for help right now--both for the emotional toll this is taking on you and to impress on the docs your need to explore more treatment options.  Joe on this board is a proponent of taking an advocate with you to your appointment so she or he can speak for you, in your presence, if you aren't able to.

Title: Re: Taste Loss please help
Post by: kimberly64 on March 20, 2014, 06:32:50 AM
I take my husband with me usually, but not to the Rheumy, that was a huge mistake.  What recourse do I have aginat a doctor who suggest I am lying about severity of my symptoms because no one else he treats has this this way as he put it.  I just dont understand how a doctor can dismiss you.  I used to never get sick so I did not know doctors could just send you away without test and I even had notes from an ENT STATING HIGHLY SUSPICIOUS OF SJOGRENS dispite negative blood work, notes that stated oral cavity void of saliva, notes from the schrimer test proving dry eye and on restasis  I just dont understand. 
Title: Re: Taste Loss please help
Post by: ohiolady on March 20, 2014, 06:54:43 AM
Kim, find another doctor who will treat you.  Teaching hospitals are very thorough.  If your ENT will prescribe Plaquenil you have the meds you need.  I am anxious to hear how you feel after trying brand name Evoxac.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 20, 2014, 07:15:43 AM
I see you dont take planquenil.  is that a personnal decision?  My pills say Evoxac 30mg but the bottle is labeled generic, so if I get the generic next time for sure I am in big trouble if it doesnt work.  I dont understand how a drug can stay on the market in a generic form if it doesnt work anyway.  Now I am worried my refill I pick up today will be the generic form and what little relief it give me will be gone. My insurance will cover zero for this name brand and its over 400 a month which I cannot afford.
Title: Re: Taste Loss please help
Post by: Gingersnap on March 20, 2014, 08:30:55 AM
I would not fret about the brand name vs generic especially if you don't have the option of the brand name. I willingly take the generic one and it works fine. I took the brand name one before the generic was available and I honestly haven't noticed a difference. Sometimes there can be different fillers in these meds but the active ingredient has to be the same.
Title: Re: Taste Loss please help
Post by: Velcro on March 20, 2014, 08:42:22 AM
Another suggestion Kimberly is to get an appointment with a Pulmonologist since you are having no luck with your Rheumy or ENT.  You are getting winded quickly, a pulmonologist can do all the appropriate things to check your lungs.  They can also prescribe Plaquenil.
Title: Re: Taste Loss please help
Post by: ohiolady on March 20, 2014, 05:23:19 PM

Yes it is a personal decision to not take plaquenil..  My rheumy wanted me to take when my parotid glands were swollen.  I declined because I have had kidney cancer and only have one kidney left.  I take twelve pills a day now and also have gastroparesis.  The thought of another med with my stomach and the effect meds can have on kidneys was not something I wanted to deal with.  I really do not have the pain a lot of people do.

My rheumy says Plaquenil has not been shown to help with dryness but some people on this board would argue with that.  I don't know.

Title: Re: Taste Loss please help
Post by: sjenny on March 21, 2014, 12:48:55 PM

Have you tried Sea Buckthorn Oil?  It helped me with mouth dryness.

Also, you might try contacting Dr. Nader Soliman from Rockville Maryland.  - He treats Sjorgrens homeopathically and was a life saver for me.

Title: Re: Taste Loss please help
Post by: sjenny on March 21, 2014, 01:06:18 PM
Don't blame you for not wanting to do the lip biopsy test - neither did I and maybe you won't have to - there is a new test to diagnose Sjogrens

Patients suffering from the painful autoimmune disease, Sjogren's Syndrome, will soon be able to be properly diagnosed much earlier, thanks to the discovery of novel antibodies by researchers at the University at Buffalo and Immco Diagnostics, Inc

Hope this helps,
Title: Re: Taste Loss please help
Post by: kimberly64 on March 22, 2014, 05:55:25 AM
Does this suppliment produce more saliva?  just curious. And how much do you take and does it interact with any meds and cause stomack upset? THNAKS!
Title: Re: Taste Loss please help
Post by: sjenny on March 22, 2014, 05:08:53 PM
Yes, the sea buckthorn oil produced more saliva for me, although there is some clinical research that a certain type of sea buckthorn oil helps with dry eye.  I only took 1000 mg tablet per day and only when needed.

I think it can interfere with blood clotting, so do not take it with other medications that slow clotting like aspirin, Plavix, Coumadin etc.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 25, 2014, 05:38:52 AM
Did you notice any side affects from this suppliment, stomack upset?  Can  it be taken with Evoxac? Do you have any experience or success with omerga 3s?
Title: Re: Taste Loss please help
Post by: Tantalus on March 25, 2014, 06:27:28 AM
My ophthalmologist recommended I try TheraTears Nutrition, a blend of fish and flax-seed oils.  He said I could save some money by finding the different components in the vitamin aisle.  I just buy the brand name.

Although it took a while, my whole routine has worked well for my eyes.  The tears evaporate quickly when examined but for the most part, if I keep up with the plan, they are pretty comfortable: Restasis, TheraTears Nutrition, any preservative-free drop (I prefer Target brand).

I don't know if the other meds help the eyes as well but I suspect that with some of them they have, that the whole goal of controlling inflammation has been helpful: Evoxac, Plaquenil, nabumetone, methotrexate.

Title: Re: Taste Loss please help
Post by: kimberly64 on March 26, 2014, 06:07:22 AM
My eyes are the least of dryness.  Its mouth and nose and throat that got the hardest hit.  Restasis and systane drops on occasion help the eyes.  Want to take omega3 only if its not a drying suppliment and is ativan a non drying anxiety med? I need something.
Title: Re: Taste Loss please help
Post by: Tantalus on March 26, 2014, 06:18:52 AM
I don't believe there is any dryness with these supplements.  I don't know about the Atavan.  Not all meds cause dryness in everyone.
Title: Re: Taste Loss please help
Post by: Thea on March 26, 2014, 11:43:35 AM
My opthamologist (sp?) specifically told me to start Omega 3s because they help with dryness of the eyes. I assume they would also help with other dryness.

FWIW, I started Plaquenil (well, the generic version) about 6 weeks ago and it seems to have already helped my dry eyes/mouth/nose. I do also use a saline spray for my nose. My sense of smell is pretty well shot. As for taste, I can taste, but things taste oddly. I keep thinking I've messed up a favourite recipe, but it just tastes different now.
Title: Re: Taste Loss please help
Post by: DryGuy on March 26, 2014, 11:53:50 AM
Ativan shouldn't be very drying at all, buspar(buspirone) is a non drying anti anxiety med but it takes time to work 2-4weeks.  Omega 3's are good for helping the meibomian glands with producing oil (for the oil layer of the eye) as well as preventing blepharitis. 

As far as supplements to increase saliva, look up a study on coq10, there was a study with sjs patients that showed that the ubiquinol form helped sjs to increase saliva production.  Now this doesn't mean take ubiquinol 100 mg every day and problem solved.  As always when adding supplements check with your dr, default disclaimer.  Also green tea is supposed to be protective of the salivary glands, I think it's egcg.  Look that one up as well.

Dry mouth sucks
Title: Re: Taste Loss please help
Post by: kimberly64 on March 26, 2014, 12:54:39 PM
Thanks for this Dryguy!  So ativan doesnt work like valium instantly as needed?  I dont want to take this everyday only as needed.  I will research.
Title: Re: Taste Loss please help
Post by: DryGuy on March 26, 2014, 01:05:56 PM
Ativan, Xanax, Valium are all the same class of medication, benzodiazepine. They are on an as needed basis. Valium lasts longer than Ativan lasts longer than Xanax.  These are all controlled substances.  And if you look at the side effects you may see dry mouth but most people don't complain of this.

Buspar is a medication you would need to take consistently everyday in order for it to be effective.  It doesn't work like you have an anxiety attack you take a buspar you feel better, that's what Xanax is used for.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 27, 2014, 06:24:02 AM
Well guys steroid are not helping me Evoxac isnt helping much except with some minor comfort.  Not tasting much at all for months now has bascially destroyed my quality of life and reason to even keep trying.  I get up one day and its there a little then I eat one bite of something and its gone.  My glands are essentially destroyed by this disease in just six months.  Living like this will be impossible.  I just dont see how and with all the tooth problems that are beginning ever pleasure in life is gone.  I had a wonderful life and now its gone. :'(
Title: Re: Taste Loss please help
Post by: Velcro on March 27, 2014, 06:38:23 AM
Hang in there Kimberly.  I know life seems so miserable right now but you truly have to give yourself permission to grieve for the life you once had.  You have to go through the grieving process in order to be able to rebuild your life and realize there is still plenty of good things in your life.  I remember being depressed and thinking, "I can't do this anymore.....I'll never be able to....I can't....I can't....".  I had to have that time in order to see the good things that I could still do.  It doesn't matter if it's as simple as hearing the birds singing outside my window, the laughter of children, a good joke.  There is nothing wrong with my hearing and I can still laugh and smile about those things.  I can still feel with my hands how soft my cat is and the love she shows for me.  I may not feel like going shopping, but by George, I've become pretty darn good at shopping online and buying myself something fun or silly to wear.  I can't spend hours out in the yard, gardening and planting flowers any more.  But I can go out there for 10 minutes at a time and plant a new rose bush.  There are so many things you can do, even if it doesn't feel like it right now.

Give your self permission to grieve but also make yourself remember all the things that you still can do and will do. 
Title: Re: Taste Loss please help
Post by: kimberly64 on March 27, 2014, 07:17:15 AM
I have grieved and am still grieiving everyday.  I think for the most part it the senses being gone.  Smell so diminished and taste essentially lost.  On top of hardly any saliva making eating  which is large part of being human and social and fnctioning  hard.  Most people on this board do not experience this huge loss and even to my ENT my case went from I was normal to an extreme case quickly.I have searched this board and others and listened to people who say there is hope but none have this extreme. I feel so alien from the people in my life now, days are a struggle to get through and night I cant sleep through are torture and being silent for my husbands sake is sufficating me as if I complain he gets upset because he is helpless to help me.  He cares for me but he is suffering too.  To have this hit so hard out of the blue just ruined our lives and our dreams for our future.
Title: Re: Taste Loss please help
Post by: Velcro on March 27, 2014, 07:45:31 AM
Have you thought about maybe seeking out a grief counselor?  I'm a firm believer that everyone needs someone to talk to.  And I do understand about the husband.  I have a terrific one but I don't talk to him about my diseases/pain much because I know he feels helpless as well. 

Letting it all out here is great as well, because you truly do have people here that understand.  We may not all have the exact same thing going on, but we all struggle with this disease and sometimes others added on.  I know it is very hard and losing your sense of taste and having diminished smell must be horrible.
Title: Re: Taste Loss please help
Post by: ammasgirl on March 27, 2014, 08:35:44 PM
I post on behalf of my mother as English is not her native language, but I wanted to let you know that her case is as bad as yours. Her onset wasn't as quick- she had mild drying for years, but she went from mild to completely dry in under three months and spent two weeks in the hospital, completely unable to eat or drink. Needless to say, she couldn't smell or taste a thing, unless it suddenly hit her in spurts, which were highly uncomfortable and made her sicker. She was sure she was dying, desperately depressed, panicked, and heartbroken.

She has been out of the hospital for a little over a month now. She was on no meds before the hospitalization, and was put on evoxac in the hospital. She says she feels very little improvement in her dryness, so far, and we are going to a new rheumatologist next Tuesday, who will hopefully have a few more ideas. However, she is doing much better. She is taking Ativan for anxiety, Prozac for depression and anxiety, and yet another antidepressant, Remeron, in a tiny dose, for sleep. She's taking these at low doses, as yes, they can cause more dryness, but she absolutely needs these medications now for her acute distress. Slowly, they are working, and she is able to eat more, do more, and now has a little bit of hope that the evoxac will work.

It sounds like you need some help with your anxiety and depression. I would not fear the psychiatric meds as there are many that won't exacerbate your dryness and will help you get through this so you can begin to recover. And you can recover. You won't be the exact same person with the exact same functioning, but you can get through this, and be happy again. I believe it for my mother, who is seeing the light at the end of the tunnel, and I believe it for you.

Please seek help with a psychiatrist and don't be afraid to try medications which will help you through this acute grief and anxiety.

Peace to you- Mia
Title: Re: Taste Loss please help
Post by: kimberly64 on March 28, 2014, 06:10:31 AM
Your mother is so lucky to have a wonderful caring daughter such as yourself. Just be there for her its more important than anything else!  Thank you.
Title: Re: Taste Loss please help
Post by: anita on March 28, 2014, 09:23:13 PM

I didn't read through all 5 pages of this thread but it's pretty obvious that you are suffering with loss of taste.  I just posted on another thread about the same.  Was yours sudden?  Also...and more importantly, did you start any medications when this began or even weeks before?  Particularly antibiotics, antihistamines, chemo drugs...anything NEW?

Many antibiotics can cause loss of taste.

Just a thought.  I would do research on ALL meds you take.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 29, 2014, 05:46:02 AM
I dont take antibiotics or havent since I started loosing my sense of taste In September 2013 which was the first sign something was wrong then the dryness came in November all over and I have very little salivary function even on Evoxac. Without suffitient saliva or quality I will probably never taste again  the way I should.  I get a snippet of what something is suppose to taste like sometimes, sometimes I taste nothing at all its like my mouth is a well of emptiness and its veryy depressing.  My smell is greatly diminished and my quality of the life is a zero.  I have become very depressed as there is no help for me I realize that now.  Yours sounds temporary, be thankful.  Take care.
Title: Re: Taste Loss please help
Post by: anita on March 29, 2014, 06:22:29 AM

It's not just antibiotics, but numerous medications.  Anything you've taken a month or so before should be suspect.

Also, do you have any signs of thrush (white patches on your tongue)?  This is another cause. 

I personally don't think the lack of saliva is the sole cause.  It may be making it worse or more noticeable, but taste comes from nerves and lack of saliva would take a long time (years), IMO, to damage those nerves...not something in weeks or months.  Also, taste is only sour, bitter, sweet and salty...all other tastes comes from smell.  So your smell problems are the bigger cause if you can't taste anything.

A couple other questions:  Do you have ANY (and I mean any), other nerve type problems any where else?  Like pins/needles in feet, burning, itching, etc?

Also, how long have you taken steroids and how much?  One of the causes of ageusia (loss of taste) is from cushings syndrome which comes from steroid usage.  If you started the steroids shortly before this happened, I would put it as suspect also.

Do you have diabetes or pre-diabetes?  Have you been tested?

Did this start slowly, or suddenly?

There are many things that can cause loss of taste, but most stem from some sort of nerve damage.

What did the ENT have to say?

Sorry for so many questions, but trying to help you find the root of the problem is the best course to fixing the problem.
Title: Re: Taste Loss please help
Post by: anita on March 29, 2014, 06:32:11 AM
Oop, I meant to attach this link to the posts I just made:

Also, I noticed on previous posts you made a while back that your taste was gone BEFORE your dry mouth was bad.  This is very important and more reason why I don't think it's related (CAUSED) by your dry mouth...if it came first.
Title: Re: Taste Loss please help
Post by: stillinshockwithsjogrens on March 29, 2014, 10:53:45 AM
It's obvious you are suffering, Kimberly and I am so sorry.

I've posted before, I have completely lost my sense of taste and smell, to have it return, 3 times in my life.  One time it was for about a year.  Steroids didn't help.  Nothing helped.  It returned slowly on it's own, each of the 3 times it left.

It is possible you are in a flare.  Mine lasted a year, but yours may not. 

You're trying everything possible.  Being anxious over it will not help (easier said than done, I know!)

Please see a psychiatrist.  Get anti anxiety meds.  Don't let fear hold you back.  You will come through this.

I WAS as bad as you, yes!  The dryness to where I couldn't swallow or eat (I lost 18 pounds in a few months), quality of life was so low, I couldn't go out to walk because it felt to dry to breathe. 

I got a prescription for clonazepam and that took care of my anxiety. I didn't notice a drying effect at all. Then I started to get better, on my own, and stopped ruminating about every thing that was wrong.  Today, I can taste and smell well enough, get out and walk...everything just got better on it's own.

I'm my own story.  Everyone has their own.  But taking care of the anxiety first, is the most important thing towards getting better, IMHO. 

Big hugs to you....
Title: Re: Taste Loss please help
Post by: kimberly64 on March 29, 2014, 11:23:30 AM
Big hugs back to you stillinshock.  Thank you for sharing your story and for your kindness.  It means so much to have this.
Title: Re: Taste Loss please help
Post by: kimberly64 on March 30, 2014, 06:30:54 AM
When you lost your taste did you have like snippets? What I mean some days you could taste some things okay but not great and then hours later completely gone again.  Each day is up and down.  Somethings I cant taste at all, some things I get a hint on the first bite only.  Is this the best it gets? Do you have greatly diminished saliva?  Did Evoxac work better after a few months and taste got bette Thanks.
Title: Re: Taste Loss please help
Post by: stillinshockwithsjogrens on April 05, 2014, 12:38:00 AM

Yes, once in a while I would be able to smell and taste something, then it was gone. Very frustrating. I had and have greatly diminished saliva.  I have side effects on Evoxac, so only take it on occasion, not regularly.  I do take it when going to bed. 

I personally don't think one thing helps.  I think time, not obsessing about it, yet doing everything possible to treat the inflammation, helps.  It took a long time for me.  Today, I am still dry, but can taste and smell pretty darn well.
Title: Re: Taste Loss please help
Post by: kimberly64 on April 05, 2014, 05:47:27 AM
Do you think a drug your are curently taking helped your taste?  Because that is the main reason for no quality of life for me on top of everything else it just makes me want to give up.  What did you start taking or do when noticed the taste return. I am just so depressed over my life right now this affects my family and me so greatly.
Title: Re: Taste Loss please help
Post by: anita on April 05, 2014, 06:52:20 AM
I don't see any direct mention of seeing a doctor SPECIFICALLY for this...has this happened?  If so what did they say or suggestion? 

If not, you have 2 suffer or get up and out to get an answer.  You should start with an ENT and then neurologist.  But you need to provide them details of exactly what was going on and how this started, medications taken at time, etc.  They will NOT be able to walk in the room, look at your mouth, and, say "who I know why and here's how to fix it".  They have to have an idea of how this detail.  Sudden or slow over time, one side or both sides, drugs taken right before, etc....things like this to HELP him HELP you.
Title: Re: Taste Loss please help
Post by: kimberly64 on April 05, 2014, 07:03:32 AM
I have greatly diminished saliva al of my main glands were hit.  It hit me overnight and I was taking no drugs before I got ill to clear this one up right now.  I am 49 years old was happy and enjoying life until first I noticed diminished taste and then my mouth went dry  then my eyes, nose and sinuses.  Now I have only snippets of taste.  Doctors I have seen say the taste goes with the disease.  The drugs I take now are listed.  I am helping myself but doctors dont know.  Thank for your reply.
Title: Re: Taste Loss please help
Post by: anita on April 05, 2014, 08:38:53 AM
As you have seen so many times on this board...people see doctors that are NOT helpful and have to go see someone new.  This is what you need to do.  Just because one or two say something, doesn't mean others can't help you.   Loss of taste CAN occur with Sjogren's, but IF it happens it's usually after years of damage, not before the dry mouth even starts.

You deserve to be listened to and treated by a GOOD doctor who specializes in this problem.  You should NOT have to suffer like you obviously are.  Please see an ENT or neurologist that has dealt with this before.
Title: Re: Taste Loss please help
Post by: kimberly64 on April 05, 2014, 08:48:03 AM
I am scared  I dont know where to turn.  I feel so hopeless because others say they have loss of tatse and its not from years and years of damage.  I am so confused and dont know what to do, please someone help me understand that has a taste loss that this like my 2 ENTs have said and a Rheumy is from the diminished saliva.
Title: Re: Taste Loss please help
Post by: cccourt1942 on April 05, 2014, 09:47:42 AM
Hey dear kim,
Most of us (and those with other illnesses) get caught in the first two stages of grief;   denial and anger. Each persom goes thru each stage.   Some in a day, some in two days, some a week or month, etc
   Some get stuck in one or the other of the 5 stages.   There is NO set time to work thru a stage.  Everyone is different.   When one asks of God or others over and over....
....and does not like th answers being given,  that signals an inability to go on to the next stage.   Perhaps yoi could read a bit by elisabeth kubler ross...even on the net.  It moght help
   Just a suggestion.  Hope you have a relaxing day
Title: Re: Taste Loss please help
Post by: kimberly64 on April 05, 2014, 02:47:11 PM
I may have to check out her books,some sound quite interesting and maybe will be indeed helpful.  Please understand that tatste loss on top of all the dryness and discomfort is a huge quality of life issue.  I am grieving?  Yes.  Do I believe that I did something or took something to cause this to happen? NO. If some of you haee lost tatse with minimal saliva and had it return with specific medications or length of taking these medications or specific suppliments that is what I am looking to find out from people.  Thanks for the advice though.  It is greatly apprecated as always. 
Title: Re: Taste Loss please help
Post by: DryGuy on April 05, 2014, 03:31:13 PM
Kim maybe try and get salagen and see if that helps you more.  I currently use salagen and evoxac, not at the same time.  Yea they suck but they're better than nothing.  For my sinuses I started using HylaMist Nasal Spray episilk by hyalogic.  It lasts longer than just a regular saline spray.

Also I was at a walkabout for the sjs foundation last weekend and someone suggested using room temp water in small sips with food to help with taste, this way you're not just washing all of the flavor away.  Just a suggestion.  The papillae on your tongue should be able to regrow and heal if damaged but lack of saliva is always going to affect taste to some degree. 

Klonopin, an anti anxiety med has increased salivation as a rare side effect, so if you're given an Rx for it it may help two fold.  Just a thought. This disease sucks, I'm 32, what I would give for another 17 years of normalcy...
Title: Re: Taste Loss please help
Post by: kimberly64 on April 05, 2014, 06:52:18 PM
Thanks Dryguy for the suggestions.  I have both medications actually but the salegen does nothing for me and I was switched to Evoxax which helps a little but not enough to taste You take care. How are the meds working for you?
Title: Re: Taste Loss please help
Post by: kimberly64 on April 06, 2014, 06:46:49 AM
I am going to look for a new doctor this week.  My Ent is good but my rheumy because I have negative blood work brushed me off and didnt offer any treatement.  The Ent gave me the medicine I am on and I have to try to find a new rheumy who will give me planquenil. My Ent feel a lip biopsy is an something I shouldnt have to go through when my symptoms are obvious but he cant prescribe that medicine he said, why I dont know. Any ideas?