SJS newbie - official diagnosis necessary?

[tamivb]

Hi All,

I've started reading the posts in this site, and it seems like a wonderful place!  I'm a newbie here and have been trying to get answers to what is going on for the past year. I think things are finally falling into place. I have been to 2 rheumatologists, and  have finally found a really good one. We were looking at RA, as I have a very high RF factor. However, my rheumie is now thinking I don't have it.  I have high RF factor, sed rate normal, no ANA or other SJS antibodies.

My doc finally decided to have me go get a lip biopsy, gave me a prescription for Plaquenil, and is really wondering if all my "dryness" is due to Allegra-D (which I would be very miserable if I went off).

I went to my ENT who did a "lip biopsy". He said it came back negative. However - I asked for a copy - and it said there were no salivary glands present to even check. I think he doesn't really know how to do it. I don't think he went deep enough. He used a claw device, and said he's only done it in the operating room in conjuction with something else. No need for stitches. I have a call in to the rheumy to see what he thinks. I have not started on the Plaquenil because I wanted to do the biopsy first - then had the flu. So now - I really want to get started on the Plaquenil to hopeully start feeling better. On the other hand, I'm thinking I should get a lip biopsy for diagnosis before I start the Plaquenil. I don't know who I'd go in to get this done. I'm not crazy about the biopsy because even with this last one, my lips were so dry it would stick to the wound and make it hurt more.

Symptoms:  Dry eyes, extremely dry mouth, dry throat, etc. , fatigue, joint pain, brain fog, tingling

So my dilemma, procrastinate starting the plaquenil, try to find someone - a surgeon to try another lip biopsy, or just start on the plaquenil and see what happens. Maybe I'll hear back from the doc. But from my last visit, I think he'll leave it up to me. (if he agrees that the lip biopsy wasn't done properly.

Sorry this is long! I look forward to making new friends here!

[ohiolady]

Tamivb,

Your symptoms are very close to my symptoms.  My bloodwork is negative and looks good as well.  My dryness was so severe that I asked my doctors, is there anything else that can cause dry eyes and mouth this severe?  The only answer was possibly sarcoidosis for which my chest x-ray was clear.  I declined the lip biopsy because I did not want to have residual pain.  The only thing they can really do for Sjogrens is treat the symptoms.  I also highly recommend resting as much as possible and avoiding stress.  Peruse the website and you will learn a lot.

I hope you will begin to feel better soon.

Anna

[lynnmarie219]

Tamivb,

Welcome to Sjogrens World! I'm glad that you found us and introduced yourself to us!

As far as your question on the lip biopsy...that is a very personal decision. I would talk to my doctor and see what he/she thinks and go from there. But I do agree with Anna....if your doc is willing to treat the symptoms starting with plaquenil...that is really what is needed.

Having an official diagnosis is nice because you know for sure what you are dealing with but if the symptoms are treated its probably not needed. And eventually...labs MAY change and show more than they do now. Not to mention....if you don't have the "label" of sjogrens...its better insurance wise.....no diagnosis...no high risk and higher payments or insurance denials. Just my experience.....

Feel free to read all you can here and ask any questions that come to mind....this is a safe and friendly place...so welcome to the family!

[Linda196]

Hi Tamivb, welcome to Sjogren's World. I'm sorry you seem to be stuck in diagnostic limbo, but as mentioned, having a doctor willing to treat anyway might simplify things when it comes to insurance, etc. The Plaquenil is usually a well tolerated drug, and results can be anywhere from satisfactory to " I wouldn't give it up for anything!" Of course there are also those for whom it won't help, or may even be detrimental, but thankfully they are a minority (not, of course if you happen to be one of them). One of the most important thing to remember about this condition is that it's highly individual, in presentation, affects, progression and response to treatment!

Ohiolady, just because a chest x-ray is negative, doesn't rule out Sarcoidosis. 10% of people with Sarc have no lung involvement. The only accurate diagnostic test is a lymphnode biopsy, usually done with the scalene node, just behind the collarbone at the base of the throat.

Sarcoidosis is considered, by some doctors, to be an exclusion criteria for SjS, but I'm living proof that it is possible to have both, and mine were both confirmed by highly positive and clearly defined tissue biopsies.

There are treatments other than symptom control...steroids, Plaquenil, methotrexate, anti-rejection drugs and biologics all treat the cause of the symptoms, and (slowly) improve the underlying condition.

[Nans]

Welcome to the group Tamivb.  So sorry you lost Goldie this month.   

[ohiolady]

Linda,

Thanks for the information on sarcoidosis.  As usual I learn so much from your posts.  I really have not read much about the disease and I only remember us seeing and treating one patient in the surgical practice I work for.  When I went to Cleveland Clinic, the rheumatologist simply said there were a few diseases that could cause dry eye and mouth and that was one of them.  She did a chest x-ray and a ton of blood work and never mentioned it to me again. 

We are so fortunate to have you moderating on the site.  Thanks for all your work.

Anna

[tamivb]

Thanks everyone for your suggestions. I'm starting to realize, like Linda said - it's individual how it affects each person. I think I need to spend a lot of time reading in the forum. There is a lot of info, ideas and personal experiences. Thanks Anna and Lynn Maria about telling me what you think. I have read some of the boards about the biopsy - and don't exactly like the idea of it. I think I'll give my Rheumie a couple of days to call back, but if not - I'll just start on the Plaquenil. I heard it can take months to start working - and I do want to start it and will hope it helps! I'll have to read about Sarcoidosis as I know nothing about it.

Nan - thanks so much for understanding about my little Goldie! She was such a good companion for 15 years and I miss her so much! Especially the holidays. It's been a few weeks now and I'm not so teary. It will get better!