Significance of actual Sjogren's diagnosis

[clementine]

Hello!

I just introduced myself in a previous thread.  My eye Dr. believes I have Sjogren's and so do I.  I also have the autoimmune disease systemic scleroderma.  It is pretty common to get Sjogren's with this disease.  I have interstital lung disease, GERD, hypothyroid, osteonecrosis, Raynaud's and probably Sjogren's.  My question is this:  Is it beneficial to go through with the lip biopsy, or does it really matter to have the actual positive diagnosis?  Is treating your symptoms and assuming you have it OK?  Sometimes, as long as you are treating your symptoms it's really OK to not have the dx.  I am doing Restasis and an eye antibiotic right now.  I have had MAJOR dental work the last few years.  I don't want to have to have the lip biopsy unless there is a strong reason that I should. 

What are your thoughts on this?  Should I have some blood work?  From what I have read, it is not always accurate anyway.

Another question, how can Sjogren's affect your liver (because my enzymes have been elevated for 2 months) and what kind of joint pain do you get?

I currently take Cellcept, Norvasc, Nexium, Synthroid, aspirin, calcium and iron.  Oh, and the new eye meds. 

I wish I could find another source that could be causing my terrible eyes and dental issues but I feel pretty sure it is Sjogren's.  I've been dealing with Scleroderma though, for years, so I feel like I can conquer anything.

Any certain things I need to include in my medical check ups now?

Thanks everyone!  I have so many questions.

Clem

[Chico]

Clem,

I'm a Newbie too.  I've come to wonder whether the lip biopsy would make any difference in my life or my treatment. Going to Johns Hopkins in January, kind of concerned the Dr. will insist. But why I can't figure.

All my symptoms are being treated, some for years. Except for dry eye- appt. for that in Feb. The Burning Mouth that kept me in pain and misery since May seems under control for now.

So your question is a good one.  Just what further insight would come from any result?

Chico

[Scottietottie]

Hi Clementine 

I'm in the UK and I don't think lip biopsies are done routinely here. Certainly none of my docs have ever suggested I have one and my bloods were not conclusive for SjS.
My rheumy went by symptoms. He put me on Plaquenil and then treated symptoms as they arose.

Take care - Scottie 

[lynnmarie219]

Hi Clementine!

I think that is a personal decision...some people insist on a diagnosis so they know exactly what they are dealing with and can face it head on while others don't care as long as the symptoms are being treated by the doctors and they feel their health is well controlled with the meds they are given.

The only thing I can think of is that you may need some kind of diagnosis for tests and or meds to be given on a regular basis for insurance reasons....but that again is an individual thing depending on your insurance plan.

I'm assuming that you see a good rheumy due to your other diagnosis....maybe discuss this with him/her as my doc does monitor certain things on a regular basis like joint inflammation through a physical exam and labs, liver enzymes through labs (mine are also elevated..some of my meds can do that so we monitor this regularly), and my other issues that pop up that are symptoms of sjogrens.

[JannaLee]

2 possible reasons came to my mind.  I'm not sure either of these reasons is completely accurate but I've had them mentioned to me.

1. Some dental work and dental prescriptions: I think you can get your health insurance to pay because the dental stuff is caused by a medical condition.

2.  To make sure you are prescribed a DMARD (Disease Modifying Anti Rheumatic Drug) or immunosuppressant drug to stop/slow the progression of Sjogren's Syndrome. (These may not be a good idea for you if your liver is not up to par)

I've had terrible joint pain in my feet, hips, shoulders and neck but after about 7 months on Plaquenil (DMARD) it's so much better along with less nausea, fatigue and muscle aches.  From what I understand, Sjogren's type joint pain does not damage joints like Arthritis does.

According to SJ?GREN?S SYNDROME:  A GUIDE FOR THE PATIENT (from Sjogren's Foundation) liver Disease is rare in Primary Sjogren's patients, I'm not sure about Secondary to Lupus Sjogren's.

Wishing you the very best, Clementine!
Janna

[Seeker]

Howdy Clementine, I wanted to address your question about a lip Biopsy.  Often a Lip Biopsy is the only way some physicians will admit you have SjS.  Having said that, I would only get one as a very last resort!! Read some of the threads on lip biopsies.   I am of the mind that you can have a pretty good diagnosis of having SjS with out having a Biopsy.  But talk to your doctor and see about going to a Rheumotologist (if you haven't already).  Blood tests for SjS is not a bad idea.  But do not be surprised if they are normal.  I hope you get your answers soon.

Take care
Seeker

[Reenie]

Hi Clementine, and Welcome!

Regarding your question about a lip biopsy, my humble opinion would be that since you are already on a DMARD (Cellcept) and being treated for your dry eyes, that a lip biopsy for confirmation may not be very beneficial....but again, as mentioned by others, it is a personal decision. 

If I were in your shoes, I would get the blood work done first (SSA & SSB are the most specific for Sjogren's, but there are other markers that are helpful as well).  If your bloodwork is positive, there should not be a need to proceed with the lip biopsy, unless your doc insists & you decide you want additional confirmation.  If the bloodwork is negative, then you and your rheumy can discuss pros versus cons, and risks versus benefits of lip biopsy.

You are doing the right thing by gaining as much insight and knowledge as you can prior to proceeding with a lip biopsy. Biopsy procedures, techniques, recuperation times, pathology results/readings, and lasting effects are highly variable among individuals, as you will see if you look up "lip biopsy" posts on this forum.

Again, welcome to the forum!  By the way, I love the name Clementine!  Is that your real name or a special screen name?

Reenie

[pudmott]

Hi Clementine,

I agree with the others. It's a highly personal decision. I am sero negative and have not had a lip biopsy. i was diagnosed on a schirmer's test (not totally accurate either) and a salivary scan and my other symptoms. In Australia i don't think we do them as a routine thing.

As someone else said though some docs will only diagnose with a biopsy especially in the states. So it might be worth your while seeing what the doc says and then taking time to make your decision. You are already on good meds so there is not a huge amount to be gained by rushing your decision


Pud

[clementine]

You all are the best!     I think I will pass on getting the lip biopsy.  Healing is pretty slow for me, having been on Cellcept for over 3 years.  I have been off of it for about 3 months due to elevated liver enzymes, so I am wondering if perhaps that is what instigated the Sjogren's flare.  I'll never know, I just find it interesting.  I think when the docs were trying to diagnose Scleroderma that I was negative the SSA and SSB (isn't that the Lupus antibody?) but perhaps it can change? Anyway, think I will just keep this Sjogren's a mystery although I am pretty sure I have it.    I will probably get the antibodies test.  I would be happy if it were negative,  although I realize it doesn't mean much. 

My screen name is Clementine.  My real name is Jennifer.  It started out as Tangelo because I have so many telangiectasias on my face so I gave myself the name.  Then, it evolved to Clementine.  Great name, huh?

Thanks again for all of the help. 

Clem

[Chana M]

Hi Clementine

You've certainly had your full share of AI conditions!  I really admire your attitude; with what you've been through you're perfectly entitle to feel that you can conquer anything.  Sjogrens is another hurdle but you've come to the right place for information, companionship and laughs.

Just to echo Scottie - I think lip biopsies aren't routine here in England.  My rheumy was happy to diagnose me with blood tests and Schirmer's both of which he said 'screamed Sjogrens'.  Maybe the doctor could explain exactly what benefits you'd gain (and it would need to be you, not them) from a lip biopsy?  Would it make a difference to what your insurance would pay for? 

If you've already been on Cellcept for 3 years then I expect they'll just offer you Plaquenil for the SjS.  Could I ask you about Cellcept?  There's a discussion going on here about using it for SjS, in preference to Cyclophosphamide.  There's also one member who's about to start it prior to a kidney transplant.  Do you think you could tell us more about being on it for 3 years, and in particular about your comment about 'healing being slow' while you've been on it.  And the elevated liver enzymes?

Great name, and thanks for telling us how it evolved!  I'd love to hear how other people chose their nicknames.  I signed in before I'd had a chance to think it through and just used my own name.  It's a version of Hannah, with a soft 'ch'.  People familiar with Indian food may have thought I was calling myself 'Chickpea' or 'Garbanzo' so maybe I can claim it as a nickname!

Chana x

[JannaLee]

Chana, I'm like you.  My screen name is just my real name....nothing at all clever...sigh....I was in shock/panic/grief/fright mode when I joined the forum.

If I ever join another site like this, I'm going to be named something real spiffy like "Gritty Eyed Sue"

[clementine]

ChickPea...ha ha! Please, let us call you that. 

I have tolerated Cellcept quite well.  I take it in pill form and have taken up to 3 grams a day, which I think is the highest dose prescribed.  I have known a few folks who it did not mix well with but that was just a few.  It is so hard to say if the way I feel has anything to do with the medication or if it's just the disease itself.  I am always fatigued...and I mean always.  As for the elevated liver enzymes, I do not know yet if it was from Cellcept and deveping toxicity because we are still in the processing of bringing me back up to my regular dose and getting labs.  So, jury's out.    I am taking Cellcept to help stall the progression of my lung disease.  It is totally experimental so we'll see.  So far, my lungs have been stable, so that is what we were hoping for. 
While on Cellcept, I've had a ton of dental work.  I have healed quite well.  I do feel like scratches and minor things take forever to heal.  I have not learned first hand how hard it would be to heal after surgeries but my rheumy has told me it would not be wise unless it was a matter of life or death, due to being so immunocompromised. 
Downside to Cellcept is you better hope you have insurance.  It's really expensive.  I have great insurance and mine cost just $50/month.   Also, it has to be taken on an empty stomach, so you take  your pills in the am, wait an hour, then you can eat.  Then, you have to wait two hours after eating to take your next round, then wait an hour to eat again.  If you are like me, you are in the kitchen looking for food all the time so that part is lame. 
When taking Cellcept, my Dr. has me getting labs every 2 months, unless there is a prolem and we need more.
There are several black box warnings for Cellcept too.  Mommies to be need to very careful.
From what I have read, Cellcept for transplants is wonderful.  Is it being used for Sjogren's?   

I feel like I rambled on forever and had nothing to say.  What specific questions do you have?

Thanks about the good attitude.  It's not always good, believe me.  I fluctuate.

Loves,
Clem

[clementine]

Sorry for those typos.  I can spell, it's just that I have already taken my nightly sleepy pills...

[Chana M]

Hi Clem

Thanks for all the info on Cellcept.  Here in the UK I'm really lucky that the cost isn't an issue because I just get it through the NHS.  It's interesting to hear that it's experimental for your lung disease; I think it's the same here for use with SjS.  I was due to start Cyclophosphamide but was given Cellcept instead, and I'm quite relieved.  I haven't been told anything about healing times, or much more than that it was an immunosuppressant so I should avoid sick people and crowds.

I've got used to the timing of it:  I take it at 1100 and at 2300, so I don't eat after 0900 until midday, or after 2100.  Staying awake until 2300 isn't always easy; and then I find that if I do I get a sort of 'second wind' and end up eating toast at midnight!

Yesterday I began the process of doubling the dose:  two weeks on two tablets at night and one in the morning; then two tablets in the mornings as well.  Today I've been freezing, cold sweats actually dripping from me, nauseous and in a lot of pain.  I don't think it's as bad as the first week of initial adjustment, however.  Do these sound familiar side effects to you?  Did you have temperature changes?

My main SjS symptoms are neurological.  I'm one of those people who was initially diagnosed with primary progressive MS which turned out to be SjS.  Over the past couple of months since starting Plaquenil and Cellcept my legs and arms have been even more useless and painful than usual.  It's impossible to know if that's because the meds have given my whole system a battering, or whether it's just a bad patch which would have happened anyway.  Did your symptoms get worse before they got better?

Thanks for offering to answer my questions.  I hope I haven't thrown too many your way!

Chana x (aka Chickpea!)

[clementine]

ChickPea 

Gosh, to be honest, I was sooooo sick when I started taking Cellcept that I would not be able to tell you how it made me feel.  And, I was also taking 60mgs of Prednisone at the same time, so figure that one out, LOL.  I do have body temperature problems but thought it was Raynaud's.  I don't really think Cellcept has given me side effects.  I have so much going on though and it's really not letting up.  If I am not having a joint issue, I am having a tooth yanked...then it moves to my eyes and they are dryer than dry.  It just keeps switching!

My husband has used the NHS and he said it was very simple. We even got a check in the mail for reimbursement! What is that??!!
Where do you live in  the UK?  I live in the US but my husband lives near Uxbridge.

Yes, when you are on Cellcept, Drs here say to get a flu shot and pneumovax shot.  I am on disability so I really have found myself healthier (relatively speaking) than I was before I got diagnosed with Sclero, etc.  Even on Cellcept, I have not gotten a cold very often.

I don't think I've been too helpful. I am glad you got Cellcept. I am not a fan of Cytoxan.  The people I know that have used it say it is only good for about a year and the side effects were terrible.

Good luck with your meds. 
Clem