Author Topic: Taste Loss please help  (Read 18535 times)

kimberly64

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Taste Loss please help
« 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? 

Kimberly
« Last Edit: March 10, 2014, 01:40:50 PM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

Tantalus

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Re: Taste Loss please help
« Reply #1 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.

T

finallyadx

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Re: Taste Loss please help
« Reply #2 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.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

kimberly64

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Re: Taste Loss please help
« Reply #3 on: March 10, 2014, 02:43:19 PM »
Finallydx,
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.
Sjogrens, Evoxac, Restasis , Omega3

Tivia

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Re: Taste Loss please help
« Reply #4 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 
« Last Edit: March 10, 2014, 05:16:25 PM by Tivia »

drylady

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Re: Taste Loss please help
« Reply #5 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.
33 years old. Plaquenil 200mg (2x), Evoxac 30mg (3 x).

Tivia

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Re: Taste Loss please help
« Reply #6 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.

angeldancer

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Re: Taste Loss please help
« Reply #7 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.
eagles flight//

Sjogrens, Arthritis, colonrectal cancer survivor, Diverticulosis, fibromyalgia, chronic sinus, chronic pain, kidney stones,  chronic allergies, digestive tract issues, norco, plaquenil, ativan, ambien, lyrica, claritan, neuron tin, celexa,predinisome,

stillinshockwithsjogrens

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Re: Taste Loss please help
« Reply #8 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.

cccourt1942

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Re: Taste Loss please help
« Reply #9 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.
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

kimberly64

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Re: Taste Loss please help
« Reply #10 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.
Sjogrens, Evoxac, Restasis , Omega3

Gingersnap

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Re: Taste Loss please help
« Reply #11 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))
37/F Dx sjs with lupus overlap, raynauds
Plaquenil,prednisone, gabapentin, cymbalta, zanaflex, evoxac, lidoderm patch, restasis

kimberly64

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Re: Taste Loss please help
« Reply #12 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.
« Last Edit: March 12, 2014, 03:12:23 PM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

ohiolady

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Re: Taste Loss please help
« Reply #13 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!

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

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Female   Age: 62

Dolly Dimples

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Re: Taste Loss please help
« Reply #14 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