Author Topic: Taste Loss please help  (Read 18537 times)

kimberly64

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Re: Taste Loss please help
« Reply #30 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.
« Last Edit: March 15, 2014, 05:06:57 AM by kimberly64 »
Sjogrens, Evoxac, Restasis , Omega3

kimberly64

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Re: Taste Loss please help
« Reply #31 on: March 16, 2014, 06:36:29 AM »
Deegee,
Are you still out there?? I sent you a private message with some questions..
Sjogrens, Evoxac, Restasis , Omega3

sassytoo

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Re: Taste Loss please help
« Reply #32 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

kimberly64

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Re: Taste Loss please help
« Reply #33 on: March 16, 2014, 12:38:21 PM »
Sassy,
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.
Sjogrens, Evoxac, Restasis , Omega3

Tantalus

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Re: Taste Loss please help
« Reply #34 on: March 16, 2014, 07:23:36 PM »
Kimberly,

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?

T


LucyD

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Re: Taste Loss please help
« Reply #35 on: March 16, 2014, 07:39:53 PM »
Kimberly,

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.
LucyD

Dxs: Sjogren's - seronegative, UCTD, soft tissue joint pain, Hypothyroidism
Medications: Plaquenil 400 mg/day, Restasis, Synthroid, Cytomel, Celexa, Deplin (L-methylfolate) (for MTHFR genetic defect)
Age: 65

Tivia

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Re: Taste Loss please help
« Reply #36 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.


kimberly64

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Re: Taste Loss please help
« Reply #37 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.
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Tivia

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Re: Taste Loss please help
« Reply #38 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.

stillinshockwithsjogrens

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Re: Taste Loss please help
« Reply #39 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!!!

kimberly64

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Re: Taste Loss please help
« Reply #40 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.
« Last Edit: March 19, 2014, 07:36:24 AM by kimberly64 »
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Tantalus

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Re: Taste Loss please help
« Reply #41 on: March 19, 2014, 08:18:20 AM »
Kimberly,

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?

T

ARJ

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Re: Taste Loss please help
« Reply #42 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.
Primary Sjogren's, Secondary Leukocytoclastic Vasculitis, Plaquenil, Exovac, Restasis, Artificial Tears, Turmeric, Ginger, Omega 3-6-9, Magnesium, Iron Pills, Vitamin D, Echinacea, Cinnamon, Alpha-Lipoic Acid

kimberly64

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Re: Taste Loss please help
« Reply #43 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.
« Last Edit: March 20, 2014, 06:06:17 AM by kimberly64 »
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Tantalus

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Re: Taste Loss please help
« Reply #44 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.

T