Significance of actual Sjogren's diagnosis

[Chana M]

Thanks Clem - that's really helpful.  It's good to be in touch with other people trying the same meds, or combinations of the same things. 

I'm only on 30 mg Prednisolone and hoping to lower the dose.  I haven't found out anything about long term use of Cellcept, or felt able to ask the docs.  It seems like an impossible question to ask with too many unknowables. 

Interesting to hear about people who have been on Cytoxan. I had moments of thinking it might be worth the side effects to have something that would zap the bad bits (!) but if it's only good for about a year then it's probably not worth the trouble.  I think I have to learn to work with what I've got and ride the tough times.  Actually I think I'm getting better at that, a lot better than I ever imagined I would be.  Sounds a bit big-headed but I don't mean to be.  I've just lowered my expectations of myself, of my life and of what comes each day.

Did you get reimbursement from the NHS because you were covered/your husband was covered by US health insurance?  My son is doing his PhD at Princeton - all funded by Princeton, including health insurance - and when he's back home he is covered by that too.

I live in Brighton, on the south coast, about an hour from London.  When were you last in the UK?

Thanks again - ChickPea aka Chana xxx

[Jag]

I went to a Rheum (who I found out after one visit was a quack) who said that it didn't matter... she treated people on symptoms, not test results. I later found out that she wouldn't treat it at all... that was her treatment... she said to use over the counter stuff for dry eyes and mouth, and said those were the only symptoms with SJS!    My endo did the blood tests (I have Graves, and he said it would go with it), and they were negative. He said it didn't matter... he'd re-test off and on and at some point it would come up positive. He did at first refuse to put me on anything. Later he put me on plaquinil, but I have horrible stomach issues with it.

I went to an immunologist, because I was IgG deficient early in life and had shots for months. I was told that was fine, but I am now IgM deficient, which he said would make me not make antibodies... so it would be rough diagnosing most autoimmunes... My SED and CRP levels along with C3 and C4 being elevated are about all I can get for positive lab values to let the docs know what is up. After my connective tissue failed in my lower back and now in my 'female' areas including my bowels and bladder, my doc is listening a little more on the whole connective tissue disease. She'd put me on a steroid taper, and I found to my amazement that most of my joint pain went away. After I was off the taper for a few days, it started again.

Each attack starts with trigeminal neuralgia. I got it about a week after the taper. I begged for a couple of weeks on messages for the prednisone back. I just yesterday got another script, but it's for 5mg a day, and being that the taper started at 40/day, I am not holding out for the kind of relief I had with that. I guess I have to find a rheum who isn't a quack. My labs came back with a 'few things off' which I'm guessing is the SED and CRP again. As far as I know, there is nothing they can give me to fix the IgM deficiency, so I'm going to have to keep convincing docs that I am sick... I just can't make those antibodies... 

Jag

[clementine]

ChickPea Chana,

Hmm, we have United Health Care BUPA international insurance and I don't fully understand how it works.  He paid a bill while he was in the office but we got quickly reimbursed.  Not sure...

Oh, my hubby went to Brighton recently with him mom...loved it.  I have been to London 3x this year and about to go again in December, where we will venture to Egypt.  The traveling is super hard on anyone, but I think especially hard on those with illnesses. 

I am a hater of Prednisone but if it's a matter of life or death take it.  Because of me taking it for a few months, I now have osteonecrosis in my knee.   I am only 41.  Just be careful with it....I am sure you already know this, but I didn't know anything about Prednisone and as it turns out, the sclero expert I see now said taht was the wrong way to treat scleroderma lung...oh well.
A little too late.

Hang in there...
Smiles,
Clem

[Katybarstool]

Hi Clem

I wonder if the refund was the same as mine. I was admitted to an NHS acute ward for abdo pain and kept in over three days. On my discharge I contacted BUPA for authorisation for some more diagnostic tests and during the call was told that BUPA would pay me ?50 for each night I spent in the NHS hospital. The reason for this is that BUPA do not take acute admissions, so they recompense you for having to go to the NHS. My follow up treatment and subsequent surgery was with BUPA.

Kathyx

[Billydude]

I too take Cellcept.   My liver tests are showing a bit out of normal range and rising.  My doc is talking about having a liver biopsy as I certainly have something going on with my liver and did even before Cellcept.

[Chana M]

Hi Billydude

How long have you been on CellCept?  Have you adjusted well?  Have you noticed any difference/improvement to SjS symptoms?

My rheumy wants me to have regular liver function tests because of the toxicity of both CellCept and Plaquenil.  I don't know how to decipher the test results - do you have any expertise in this you could share?

A liver biopsy doesn't sound like a lot of fun.  Have they given you any advice about having the biopsy while on CellCept?

Take care - Chana x

[Billydude]

Hi Chana.  I've been on Cellcept for perhaps 9 months or so.  I don't notice any side effects or marked improvement.  Its a pretty strong drug so it does scare me a little that I'm on it.    My liver elavations were before Cellcept and there has been a slight rise so we're no sure why but my doctor didn't suggest anything from the Cellcept.  Perhaps this is a question for my next rhumy appointment.     I try to understand what the blood tests mean and have a website that helps quite a bit.   I always ask the lab to send me a copy.   You can find out what they mean here....
http://www.labtestsonline.org/
I am feeling a bit better right now but thats because of the cooler weather.  But,  I think I should be even better than I am in this weather so its hard to tell.   I'll be able to judge more when the warmer weather hits.    My autonomic symptoms are particulariliy effected by the heat.
Steve