liver function with SS and Cellcept.

[MAT51]

Having started Cellcept/ MMF a week ago I'm having weekly blood monitoring. So my GP took a baseline while I was still off drugs. Nothing untoward showed up on the screen when I was getting my bloods done again today but I noticed that my serum total protein is always just over the range, plus my serum gamma GT level is slightly elevated often (I barely touch alcohol) and my Packed Cell Volume is always a bit raised too. Bearing in mind that these might be titled differently in UK labs - can anyone tell me if this might indicate early liver disease (my full body CT with contrast was fine apparently) and if so could this be Sjogrens related?

[Tharrell]

I think if it just slightly elevated it could be from the cellcept and not early stages of liver disease, especially since your scans were normal. That's why the doctor is monitoring you closely, to make sure it does not go into unexceptable range. I do monthly blood work, because of the heavy antibiotic treatment for my non TB mycobacterium kansasii lung infection. I will be on the treatment a minimum of 18 month. One of the antibiotics, isoniazid, is known to sometimes affect the liver. At first the liver numbers were just mildly elevated so we waited and see. Then the numbers jumped way high and I was taken off the ioniazid. The next blood test showed my numbers back to normal and the infectious disease doctor traded out the ioniazid for levaquin.
Just do your blood tests as your supposed to do, your doctor will let you know when there is concern. Stopping the medicine will bring the liver back on track without any lasting damage.
Hope this helps explain it?

[MAT51]

Sorry Tharrell - I should have made it clearer that these were my baseline bloods done before I started Cellcept so I wasn't on any medication other than ones I've been on for many years. This is why I'm a bit concerned. I had to stay on a low dose only of Methotrexate for two years because of elevated LFTs but this affected different ones that showed toxicity. And I'm also concerned that my serum total protein and plasma cell viscocity are usually elevated too because when I look at lab tests online I read that all of these show possible dehydration and yet I drink a lot of water!

Ps my faith in doctors is at an all time low!

[Sooki]

The liver function blood tests that I monitor liver function with are:  alkaline phosphatase, ALT, AST, and bilirubin, albumin, and total protein.  I take both plaquenil and cellcept.  On occasion my Alk Phos is slightly elevated.  When that happens, my rheumy monitors it 6 weeks later or so to see what the trend is.  It has always either gone done soon or at least not increased for awhile.

With Sjs, teeth are often a problem.  When I have a filling or other dental procedure that requires lidocaine or other pain killer, my liver numbers increase for a few weeks.

Overall, I have done very well on cellcept for 5 years with no adverse side effects, other than a slight increase in alk phos once in awhile. 

The reason I was put on cellcept rather than methotrexate was that my sister took methotrexate and her liver objected to it.

[MAT51]

This is very cheering thanks Sooki. However the only medications I was taking when these bloods were taken were a low dose of Losartan for hypertension and Levothyroxine. My serum total protein is usually elevated and so is my Packed Cell Volume. I am wondering if any of these are likely to be associated with Sjogrens?

[irish]

If you are having issues with your doctor and want a different opinion you might try going to a hematologist. They could check out your blood and ohfer a second opinion on what is going on. Yes, numbers can be affected by dehydration and also by Sjogrens. That is the best I can offer you. Hope you can figure this out. Irish

[MAT51]

Thanks Irish. I'm not desperately concerned because of the recent CT scan only showing arthritis. Otherwise is definitely be asking to see a haematologist as you suggest.

But having previously been misdiagnosed with and aggressively treated for RA, and now lost the rheumatologist who rediagnosed me with pSjogrens to retirement - I admit I'm feeling anxious about key things slipping past the much younger rheumy intern. At least I think "intern" is right? this would be a senior registrar rather than a fully fledged consultant here in the UK?

Anyway he's just sent me a letter, the content of which I found very unsettling. He described my SS as seronegative and clearly regrets offering me Rituximab and Cellcept at my last appointment. He is now saying that there are no further treatments for other than Pregabalin, although he will give me the benefit of the doubt and let me try Cellcept reluctantly? Not very confidence inspiring!

I'm guessing that these elevated blood markers are Sjogrens related - but with severe dysguegia and dysphagia  and horrible GERD - I'm getting increasingly worried that my ANA pattern and symptoms  point to Scleroderma or Polymyositis rather than Sjogrens. So I'm self monitoring my bloods like a hawk!

 

[Sooki]

Many of us, including myself, are seronegative. I was dx'ed on the basis of symptoms and lip biopsy.  I've read that 40% of Sjs patients are seronegative.  And Cellcept has helped my symptoms a lot.

It might be helpful to find a rheumatologist who has more experience with Sjs?

[MAT51]

Thanks this is great to know. My monitoring bloods are fine so far apparently and I'm tolerating the increased dosage fine so far too so I'm feeling a bit more optimistic about the Cellcept now. The UK Sjogrens expert whom I'd like to see is based down in the south of England (I'm in north Scotland!). But she does see private patients so I thought I'd give the rheumatology team here a final chance in March, and if I'm not happy or feeling well supported then I'll try and go down there once a year as I have family who live in the vacinity. The problem seems to be that most rheumatologists in U.K only treat seropositive Sjogrens with immunosuppression, and then only occasionally. Otherwise it's just Plaquenil, Gabapentin/Pregabalin or nothing.

[Sooki]

Good plan!  A good rheumatologist is worth so much.  I'm fortunate in living near a city with good rheumatologists, but many people opt to travel to see someone good once or twice a year.

[MAT51]

Thanks. I believe the young rheumatologists where I live are good too and it's an international university teaching hospital. But the man heading their team has just retired and I've observed  Sjogren's seems to draw the short straw in the U.K. Specialist knowledge is probably very patchy everywhere really? In many was it was much easier when I was diagnosed with RA, which was more understood and taken more seriously by doctors because of the well established potential for erosive damage.

I think SJS is mainly viewed as a secondary nuisance rather than a potentially destructive disease in its own right. I suppose it is relatively new on the rheumatology scene as a disease (1930s) and, like APS/ Hughes Syndrome, is viewed by many across the world as a cub disease compared to Lupus and RA. This is what I've observed so far anyway, once Lymphoma and MS have been excluded.

[anita]

Sorry to hear the change in heart from the doctor.  But as others have said (and I have discussed with you many times before), up to 40% of us are sero-negative (myself included) even though we have very positive lip biopsies.  Your area is NOT unusual in dismissing the seriousness of this disease.  There are countless number of doctors in the US that say the same thing as yours.  If you have read years worth of posts on this forum alone (as I have), you would see just how many people hear the same tune from their doctors, as you have heard from yours.  So, it's not Scotland...just another under-educated doctor that doesn't realized the significance and impact this disease has on the body.

At least he had already offered you the Cellcept, so you'll get to see if it helps.

APS/Hughes syndrome does not fit in this same category.  I have this and have never had anyone question it's severity or impact to my health.  Actually, Prof Hughes is in London (still offering some part time consults, at last I heard), so I can't imagine anyone in your area with APS not being treated accordingly.  My friend in London that I mentioned before (when asking about the NHS) has APS and never has any problem with people taking her condition seriously.

I just hope your trial with Cellcept offers you some symptomatic relief and then you can report this improvement to your team.  maybe then they will change their tune!!

[MAT51]

Thanks Anita - London can often feel a world away from Scotland both culturally and in health terms. I was tested for APS/ Hughes by the rheumy no.2 who said I didn't have a connective tissue disease last January. He was sure I had this but didn't accept seronegativity of any sort. I believe that Dr Hughes calls the combination of Hashimoto's, Hughes and Sjogrens a trio of autoimmunity or something. Rheumy no.2 said that Scottish rheumies have all agreed to adhere strictly to the EULAR/ ACR diagnostic guidelines. When I told him I have English friends who have been diagnosed with and treated for seronegative Lupus - he says no such thing exists and that in London and another area they are incentivised to diagnose in order to get the numbers up for research funding. He is a very rigid man but apparently he has saved people's lives who have vasculitis so those who recommended him tell me. I sometimes wonder if the tests he ran for APS would still be negative bearing in mind that,once off steroids etc, my ANA swung positive.

I'm told it's quite common to be seronegative for Hughes too but I have enough head banging to do just now with over ambitious little twirps who back track, having failed to do their homework on me! I've written a sharp letter back to his and copied in his colleagues and my neurologist to cover my own back and hopefully ensure they think twice about promoting him further or assigning him to me ever again! A few doctors have learnt the hard way not to mess with me!

I really only drew the comparison with APS and SJS because they are both still underfunded and under recognised and less established as more newly acknowledged diseases. So far I'm doing okay with Cellcept having got to two tablets a day. Got to double this by Christmas so fingers crossed -and then hopefully I'll be able to assess whether I'm feeling improvement. The twirp says there's no way to measure improvement apart from relying on my own account of how I'm feeling. I said in my letter that, in the past, when (mis)diagnosed with RA, my sed rate or Plasma Viscocity always reflected my pain levels and symptoms pretty accurately. Honestly we should receive a stipend for all this eh?!

I do realise it's a postcode lottery with Sjogrens wherever we live in the world  not just in Scotland

[anita]

I didn't know APS was a consideration for you.  I have never heard of sero-negative for APS.  They are very strict about criteria here for APS, as well.  You must have 2 positive anticardiolipin (aCl) labs, 6 months apart AND at least one confirmed thrombotic event.  I can't imagine how they would tell if someone had sero-negative APS...unless they have repeated thrombotic events (strokes, TIA's, DVT's, PE's, etc)...and they would have to be confirmed, of course.  Then it would just be guessing if the events were from APS.  There are many clotting disorders, so I'm thinking that is why they don't have sero-negative APS...as the labs are the only way to really confirm APS vs other clotting disorders.

Have you had a confirmed thrombotic event??  If so, then by all means, you should have them repeat the aCl test now that you are not taking steroids!!

Your account of symptoms and improvement will be the largest proof of whether the Cellcept is working.  Being that you haven't had much pain lately (based upon your comments), your SED rate likely isn't that high now anyway.  My SED rate likewise reflects my pain level...for certain types of pain/swelling.  I hope he just takes your word as for whether the Cellcept is working or not.  Labs are greatly effected by immunosuppressants, so doubt they would rely upon labs.

How long is your trial of Cellcept??  It typically takes a few months to get full effect.  I'm so glad you got this...since he's changed his mind about treating your Sjogren's.

[MAT51]

My trial is for four months although my next consultation is in March. Drugs tend to work fast with me -I either tolerate then well (rare) and they absorb and take effect early on or my body rejects them badly -I guess I'm very sensitive to effects both good and bad. I seem to be feeling well on this one so far.

RE APS - I've never mentioned it because I've never thought about it for me. All tests were negative for it last year (but then so was my ANA at that point) so I forgot it as a possible. But I do have Livedo Riticularis on feet and knees and I felt terribly unwell with severe pain, swelling and throbbing on long distance flights in 2014 -to the point where I absolutely dread my son insisting we visit him in Sydney next year. I had a couple of miscarriages - but that's it. It only came up on the UK APS forum when I had asked on a lupus forum about Livedo and throbbing pain I get a lot in my legs. Apparently Dr Hughes has spoken a lot about this trio of Sjogrens, Hughes and Hashimoto's and many in the U.K forum seem to know him and are seronegative but have the other two diseases or Lupus. I'm really not going to push for more testing as I've survived without strokes or thrombosis to date including my gallbladder operation last year.

Re pain - that's a hard one - we all tolerate pain differently. For a few years the SFN pain woke me up crying out and tortured - and I have a very high pain threshold -barely used pain relief for three large babies and I don't fear conventional pain as much as I fear the progression of numbness and disequillbrium, tinnitus, GERD, rank taste (worst symptom of all), facial pressure and continuation of burning lips and gums, which I am told is SFN rather than Burning Mouth Syndrome. I'm immensely relieved that SFN is no longer wracking my legs and feet or hands but I still have a lot of toothache throbbing pain and muscle weakness with the odd shooting pain in my legs and arms/ hands  - but nothing compared to full on arthritic pain or the shooting nerve pain I suffered for a few years.

When you say pain do these other horrible symptoms affecting my face qualify I wonder? They are certainly just as terrible to me. My ESR used to rise high when I had this warm glow about my shoulders and arms and neck and I have this at present but it's not pain -in fact it's quite pleasant compared to the raynauds cold in my feet! I'll find out from GP what my Plasma Viscocity is and CRP. Last time it was tested in June it was 1.98 (high) which is about 75/80-ish in sed rate I think. PV is more a reliable measure than ESR though and my new hospital only uses this. CRP was raised at 19 but mine usually stays low at around 12 so is less dependable as a measure for me although it reached 160 twice last year when I was sick on Imuran. And I did have a severe thrush infection down below when my blood was taken by rheumy last time in June which may explain high readings back then.

I used to find that my ESR/sed rate measured my feeling of general flu-like unwellness and stiffness  rather than purely arthritic pain as yours maybe does? You do have PsA and asthma which affect the sed rate too after all -whereas I only have confirmed OA, which wouldn't affect my inflammatory markers. But then I'm hypothyroid which also plays a role for me as part of my autoimmunity. And Sjogrens will make my blood thicker too of course.