I'm new to this forum.....

[JanusAscending]

and my question is, Is there hope for Sjogren's Syndrome? I was wondering if there are any others on DU who suffer from this condition. I've been plagued with it for about 6 months now. I'm wondering if I will ever be able to taste my food again. Mine started out with a bad case of oral Thrush caused by my inhaler Advair. My Dr. took me off of it, and put me on Neostatins for the thrush, but now my sense of taste is GONE, and I am producing no saliva or tears. He has me on OTC remedies at the moment. They are of little help. Everything I eat tastes the same...like a metallic taste. I'm ready to give up on eating altogether. I'm constantly sipping on water, just to be able to swallow! Any support from other sufferer's would be greatly appreciated!!! Thanks!

[ZombieHorde]

1. I have no advice, but you have my sympathy.

:hug:

[snagglepuss]

2. I am sorry to hear what your going through. I've never heard of the syndrome

Are you seeing a specialist. If so have you perhaps considered getting second opinion?

A number of years ago my sister had large kidney stones that wouldn't pass and her specialist told he would have to surgically remove them. She was resigned however I was horrified that no option was suggested. I called the Kidney Foundation and asked them is they knew of specialists that dealt mainly with stones. After several calls I discovered one of the world's best stone specialist worked in Toronto. I called and told the receptionist about my sister's imminent operation, the receptionist was stunned that my sister would be undergoing surgery for a stone when this particular specialist had developed a device to destroy large stones without surgery. The receptionist booked an emergency appt with doctor and my sister had the out patient procedure instead of an opertion.

I mention this because it pays to ferret out doctors who have a particular interest in certain diseases or syndromes.

I wish you all the best. :hug:

[snagglepuss]

3. Have you checked out the THE SJOGREN'S SYNDROME FOUNDATION website?

Its at http://www.sjogrens.org/home

Also out of curiosity I was googling w Google Scholar your syndrome and when I read that Sjogren's is an auto-immune disease I immediately thought of Vitamin D because it role in immune disorders is being studied extensively.

Below are some quotes from a study about Vit D deficiency and Connective Tissue Diseases such as SS. But before embarking on supplementation
its probably best to print the study to show to your doctor.

"Data in our study as well as those reported by others suggest that UCTD may develop into any well-defined CTDs <16-18>. Evolution into a specific established CTD was found in 21.7% of patients with UCTD during the follow-up period. UCTD most frequently progressed into RA, and SLE, Sjögren syndrome, and MCTD had about the same prevalence. Interestingly, the lowest levels of vitamin D (<30 ng/mL) were measured in UCTD patients who subsequently evolved to defined CTDs

snip


"Vitamin D has a pivotal role in the maintenance of immune homeostasis. In various systemic autoimmune diseases, low levels of vitamin D have been described previously. We showed that, in patients with UCTD, serum levels of vitamin D were significantly lower compared with healthy individuals. Moreover, critically low levels of the vitamin clearly correlated with the progression to well-established CTDs. Our findings support the idea that vitamin D may be a key regulator of autoimmune processes in patients with UCTD

http://arthritis-research.com/content/10/5/R123


I hope the information might be useful.

[JanusAscending]

4. Thanks for the info,

I'll check it out. I've been on mega doses of Vit. D for over a year now, due to some other issues.

[Paper Roses]

5. I am awaiting the responses to your thread. I've just been through

a similar situation. Was not feeling well and went to the Doc with a list of things that were bothering me. Because one of the things bothering me was commonly treated with a sulfa drug, the Doc prescribed one of these sulfa drugs for me. I had real bad reaction to this sulfa drug that ended up with me in the ER to be pumped up with Prednisone and Benedryl.

Back to the Doc for a post ER exam, he said I had a case of thrush and prescribed Nystatin liquid for me. Since taking this stuff I have absolutely no sense of taste. Everything has a bitter, metallic taste. Plus my mouth feels awful. I should go see him again for follow up but--and here is a kicker---I have to wait for the ER bill. I don't know if Medicare covers this ER trip and what part of the bill I will have to pay. My eyes are itchy, mouth is very dry.

I don't know if this bitter taste is from the medicine or from something else and I can't afford another big bill. I keep thinking that it will be better tomorrow. It has been 2 weeks.

I never heard of this affliction, will be doing some research. What OTC products are you trying?

[JanusAscending]

6. Well for one thing, I'm glad I'm not alone in this!

Another thing is, I've been using Rite Aid brand "Lubricant eye drops" and "Biotene Oral Balance dry mouth moisturizer liquid. It claims 3 hr. protection. The first time I used it, I think I used too much. When it ran down my throat I had instant heartburn. (I have acid reflux, and have been on Nexium for 4 years now.) so I find that just a couple drops on the tongue is sufficient. I have yet to see my new eye Dr. my PC referred me to. I have cataracts, and need to see if I need surgery yet, plus a new eyeglass scrip. He will also be doing a strip test of my tear production. My PC is waiting for the results of this test before he sends me for the "lip biopsy" to make sure is is indeed Sjogren's Syndrome.He won't prescribe for me until he is sure. In the meantime he sent me for a battery of blood tests to find the actual cause. (Lupus, Diabetes, and Rheumatoid problems are the primary causes of the Syndrome). I'm am very upset at this moment because when I called him to see if he had the results of my tests back he says..." If you could see the pile of lab tests on my desk that I have to go through, and my patient load, and I have a patient in the hospital, blah, blah, blah!! Right now I am treating you for thrush...keep taking the medicine until it goes away" Well, I'm on my second bottle, and I feel the thrush is gone, but I still have the symptoms of the Syndrome!!!!! You mean to tell me that the answer to it all is in that pile of lab work, and he doesn't have the time to let me know if I have Diabetes or whatever???
I hope I don't end up in the ER over this. I'm in the same boat as you, and can't afford this shit! Do we need Health care Reform??? DAMN RIGHT WE DO!! We also need more Dr's. and PA'S, to help them read their damn Lab workups!!! I don't know about you, but I'm going to be 71 in a couple of months, and I don't want to live the rest of what's left of my life like this! I'm still in my own home, alone with my two pets, and my quality of life is getting worse every day. I don't know if I want to live like this much longer!! I'm glad you replied to my post. At least we can comfort each other, because we understand what it's like!

[grasswire]

8. go to the clinic and ask for a copy of the report

at least you will have some information at hand, and perhaps you know someone who can decipher it for you until your M.D. gets time to talk to you.

[JanusAscending]

10. I had it done in a Hospital lab here in town.I called my Dr. this A.M.

and they said it wasn't showing up on my chart yet!(my Dr. posts everything on his computer system. EVERYTHING!) It's a good thing in a way, but it really slows the whole procedure up, as he's the only one posting the data!! The office secretary said she'd have him call me this evening! More waiting, and I'm feeling lousier by the day!!

[JanusAscending]

7. How are you doing with the research,

and are you getting any better? I'm still the same. I'd really like for us to keep each other up to date on our progress. Maybe we can at least be of support to each other? I almost choked on a piece of toast this AM. That's how bad mine is. It REALLY scared me! Have to have water handy at all times! I have an appt. with an eye specialist on Oct. 30th, to check my cataracts and tear production. I'm still waiting on the lab tests my Dr. had done, and it's taking FOREVER!!

[Paper Roses]

9. Good Morning, I'm not getting far on my research. I feel I am in

limbo at the moment. Still hoping to get over this awful situation where everything tastes bitter. I have yet to go back to the doctor. I know something is wrong but I don't have the liberty of going again right now. Still waiting for the ER bill so I know if all this has been covered and how much I will owe.

I don't know which is worse, the bitter, metallic taste or the very itchy eyes. I have reviewed the list of symptoms and I do not have all of them. I am not sure if I still have the thrush or if what is going on is the aftermath.
There is someone else on DU who has this syndrome, I wish I could remember who it is, I'd send a PM to her about it.

I also have a glass of water handy at all times. My distance vision is sometimes a little blurry, this has developed during the past few months.

It is hard to know if my problems are a result of the allergic reaction to the sulfa drug or if I do have another real medical problem. If I had the proper supplement to Medicare, I would go to the doc. As it is, I have to sign up for a supplement soon and it will not take effect until January

I am a typical under-insured senior. Very little money left from Social Security to afford the extra coverage.

It stinks! I know I should go to the doctor again but i have to wait. Paying the bills comes first. If I can't keep up with the bills, the doctor surely is not going to see me for nothing.

Maybe a posting in the Health forum with Sjogren's Syndrome in the title would catch the eye of any other members with this problem.

Should one of us make that post?

[JanusAscending]

11. Snagglepuss 's link to the association has some very good info.

Yeah, why don't you try posting something with the Syndrome as the Header? I'll watch and see if we have anyone else to join our "support group"???? Good luck...we both need it!