liver function with SS and Cellcept.

[MAT51]

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.

Ps sorry last reply was too long! What I mean is that my sed rate continued to fluctuate long after RA type pain had been replaced by feeling of systemic/ flu like unwellness with tendinitis - so I think for me, pain isn't the main measure of disease activity. My tendinitis is quite bothersome presently though.

[anita]

I thought your SED rate and pain was more related to RA flares. 

Sure, I get higher SED rates even with general inflammation (even when joints are not swelling or active PsA).  I don't remember you even mentioning your SED lately since your RA pain is not an issue...or your nerve pain either.   June is a long time ago and much has changed for you since then...who knows what your labs are now.   You have said several times that pain isn't an issue anymore (more numb now).   

This is why I said your account of your symptoms and whether they are improving will be the proof...because your SED rate may not reflect current inflammation (if RA and nerve pain not there any more)...not to mention that Cellcept can effect your labs.  Maybe it will (since your SED goes up with flu symptoms, etc), but I certainly hope they don't based your trial on simple SED rate and PV labs.  Your 'symptoms' (ALL of them) are what is important...and what I was focusing on.

[MAT51]

Thanks Annita yes I know what you meant. However I have actually been complaining quite a lot on here about RA type pain returning in my tendons. Not that I expect you to remember from all my rambles!

However I haven't been able to move the pillow or duvet around the bed at night for weakness in my arms and legs, and often that is accompanied by pain -what I call my bedache. It's in my whole arms but knuckles, wrists and elbows most with this hellish weakness and toothache-like pain in the tendons around my ankles and elbows. I used to think of this as RA and still do really but as it's non erosive I guess it's Sjogrens tendinitis.

Anyway, to update you, I spoke to my GP yesterday on the phone and asked for my blood test results. The only test they didn't have enough blood to run was my PV (Plasma Viscocity -like sophisticated version of ESR). How can they run out of blood?! This happens often to me since they don't do Sed rate in new area so the PV must require quite a large sample or something. I'm actually in much more pain presently than I've been in for ages but GP said she would run a PV in mid January. My CRP was 13 which isn't high or low just a tiny bit raised. Similarly to those with Lupus my CRP doesn't really reflect my pain much. And I agree that I'd rather they relied on my account of symptoms in asesssing whether it's working. But I like to have my evidence in black and white - I'm a bit literal in this way!

Also I'm sure that Sjogrens has its own disease activity scoring system? I've found myself a very specialist optician who will look right into the entire retinal with a high specialised state of the art camera.

I explained to GP that one of my main concerns is that I don't want this young registrar taking over my case if he gets the rheumy job left vacant by the last chap retiring. No way will I see this young man again - he doesn't look at me just stares at the computer screen and comes out with rubbish about Sjogrens being a rare disease and neuropathy very rare and therefore they have no protocol for someone like me. Errant nonsense! I also said that I'm concerned, having been misdiagnosed and treated previously -that they are missing Scleroderma, given my nucleolar ANA. I pointed out that Scleroderma is a disease that can respond very positively if caught early so perhaps my two years on Methotrexate and Plaquenil account for why I don't have external skin manifestations apart from telangectasias on face and hands. My constipation feels to me more like hardening and tightening of the rectal passage and colon rather than dysmotikity or dryness but I could be wrong as there are many nerves in this area too so it could also be autonomic as part of my SJS.

She agreed and said we will wait and see how he responds to my letter. If he doesn't respond then she will write on my behalf. If I get nowhere then I'll request a second opinion from this UK Sjogrens specialist far away down in England (near London/ Oxford).

The upper GI problems are bad, swallowing getting more hard and rancid taste more dominating. But on the very plus side - within a week of starting Cellcept my constipation has resolved - after over a year of being really severe! could be coincidence but somehow I don't think so. Another pointer towards Scleroderma being in the mix I believe and Cellcept is one of the main treatments so I may never get it formally diagnosed but I am convinced that I have it with Sjogrens. And I don't want to leave it to deform my face -which is already full of weird sensory stuff such as this cranking tightness in my teeth, lips and nose, for them to identify it too late. If Cellcept works then who cares what I'm formally diagnosed with?!

[quietdynamics]

Elevated Liver Lab: At one point during monitoring at start with methotrexate I presented with elevated numbers. Dr lowered medication, ran labs for 2 types of hepatitis and Crohn's (both negative). So far labs have been good.

Various labs for inflammation for myself do not appear to reflect state of symptoms.
Towards end of week (Day 4-5 after taking Methotrexate livedo on arms/thighs, foot numbness, psoriasis patches on forehead come back.. so for me quick visual cues that med is running out. One option is going back to higher dose using injection)

There were a few years when I had problems walking (one of the reason I have been determined 'disabled', unable to lift milk container from refrigerator with right arm, or even brush my hair without fatigue,(hair blower was a thing of the past), nor sometimes at night move leg at night.

Vit deficiencies showed in labs (some are found in general population. I believe in my situation gastro symptoms exacerbate the situation as well as what the Dr. termed "systemic inflammation".) Since therapeutic doses and maintenance with labs, muscles, bone pain and mental/cognitive have improved. So combination of the protocol. Plus with the much better management of symptoms I am able to get much better quality restorative sleep.. which helps immensely.

Chipping at the iceberg.
Gastrointestinal and liver complications of Sjögren's Syndrome
https://www.bssa.uk.net/live/documents/1a.pdf

Wishing you success with new protocol.

[MAT51]

Elevated Liver Lab: At one point during monitoring at start with methotrexate I presented with elevated numbers. Dr lowered medication, ran labs for 2 types of hepatitis and Crohn's (both negative). So far labs have been good.

Various labs for inflammation for myself do not appear to reflect state of symptoms.
Towards end of week (Day 4-5 after taking Methotrexate livedo on arms/thighs, foot numbness, psoriasis patches on forehead come back.. so for me quick visual cues that med is running out. One option is going back to higher dose using injection)

There were a few years when I had problems walking (one of the reason I have been determined 'disabled', unable to lift milk container from refrigerator with right arm, or even brush my hair without fatigue,(hair blower was a thing of the past), nor sometimes at night move leg at night.

Vit deficiencies showed in labs (some are found in general population. I believe in my situation gastro symptoms exacerbate the situation as well as what the Dr. termed "systemic inflammation".) Since therapeutic doses and maintenance with labs, muscles, bone pain and mental/cognitive have improved. So combination of the protocol. Plus with the much better management of symptoms I am able to get much better quality restorative sleep.. which helps immensely.

Chipping at the iceberg.
Gastrointestinal and liver complications of Sjögren's Syndrome
https://www.bssa.uk.net/live/documents/1a.pdf

Wishing you success with new protocol.

Thanks for this QuietDynamics. Interestingly the link you give is to an article written for the BSSA by the SJS rheumatologist whom I said that I would like to consult, down in Swindon, England. It makes interesting reading for me.

I too had to reduce doses a few times on Methotrexate because of my high LFTs. I couldn't tolerate any alcohol whatsoever while I was on it and am avoiding it entirely again now - which is easy for me because I've never been a big drinker. I did find this greatly improved once I took it by injection though. I do have microscopic haematuria and a very large, irregular cyst on one Kidney but am not prone to cystitis or kidney infections.

Re your lack of inflammatory bloods and symptoms parity, this might be of interest to you - takes from the Sjogrens pages on Arthritis Research UK:

"Blood tests – People with Sjögren's syndrome often have high levels of antibodies in their blood. These can be measured with blood tests. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.

People with Sjögren's syndrome often have very high ESR levels regardless of whether they feel well or ill. In Sjögren's syndrome, the ESR or other measurements of inflammation such as C-reactive protein (CRP) aren't very useful in assessing how active the condition is – unlike in lupus or rheumatoid arthritis."

Makes me think Annita is right to say that I probably do have some RA, Lupus or other inflammatory disease going on as mine fluctuate dramatically according to medications and pain/ stiffness/ feeling of flu-like malaise.

[quietdynamics]

"Blood tests – People with Sjögren's syndrome often have high levels of antibodies in their blood. These can be measured with blood tests. High antibody levels can make your blood thicker than usual, and this is measured by an erythrocyte sedimentation rate (ESR) test. The ESR measures how fast the cells in a tube of blood settle. The thicker your blood, the faster the cells settle and the higher the ESR.

A few times poor Phlebotomist have run out of room (one new tech cried.. I felt really bad for her) because they could not draw blood from me. Veins deep and thick blood.
So I have been prepping by drinking even more water up to two days prior ( otherwise they send me out to drink water and wait  )
I do stop drinking Gatorade which I think would skew labs, however, I find helps when I feel a dehydration headache coming on .. they are not fun at all.

Yes.. I thought you would enjoy the origin of the link, which was incidental.

Younger days I also had miscarriages and wonderful daughter was a "Crisis Pregnancy". Meaning I needed to go to a specific neonatal for monitoring with that pregnancy. Her brother was C-Sec, She was V-Bac/induced. LOL  Two red haired heart-breakers. There are females in family history with miscarriages. Then there are possible ones missed (1.5-2 months before pregnancy test) as with late menses with heavy clots, etc.

[MAT51]

It must be a Sjogrens thing then because I'm exactly the same. They gave up on my 3rd IV antibiotic for sepsis last year when all available veins had phlebitis -still got the scars! And as I've said to Annita above - not evough blood to run my PV/ESR a few weeks ago. I drank loads beforehand anticipating this problem but it must evaporate into thin air?! In fact I drink so much I should be awash but it's retaining it that our bodies are reluctant to do! I'm actually working on a series of drawings trying to convey this through symbolism and metaphor. So far cacti ? are featuring rather a lot with me as the water supply!

[Lotus1]

Hi Mat51

For ages my ALT liver reading was high.
I suspect the sleeping pills caused the high reading as I take no other medication than oroxine which isn't a drug really.

I've been drinking dandelion root tea (supposed to help regulate liver & gallbladder function) 3 times a day for a good while now & my reading has come down form 119 to 47, needs to be <36.
Hoping the tea is doing the job & the reading will reduce further.

Wondering if the dandelion root tea would help your liver?

Hope you find something to help.

Lotus1

[MAT51]

Thanks Lotus - my main beverage is herbal tea of flavours including dandelion root. In my case it's my GGT and I think it's weight related so I need to cut out weight around my middle! I had my
gallbladder removed last year and apparently it had attached to my liver. My liver function tests soared for months but finally came back to normal after eventually. I think the liver is generally very good at self repairing.

[anita]

There is NO excuse for not having enough blood to run all the tests requested.  I can understand if the doctor orders additional tests after the fact, but a GOOD phlebotomist KNOWS how many vials to get for tests requested!!

I forgot about the tendonitis...I only remembered the RA (joint pain) and nerve pain being gone (turning to just numb).  I try to follow too many people and their symptoms, etc at one time.  I have a hard time keeping track of my own, much less someone else...lol

I so wish you get someone good to act as your rheumy...not this guy you saw last time.  You need someone that will look into the scleroderma, as well as, properly treat the Sjogren's neuropathy...and test/confirm the autonomic symptoms.  They are guessing instead of diagnosing in a traditional manner...then writing off being able to properly treat your Sjogren's and related manifestations.  I'm so glad you stood up for yourself with the GP!!!  Now, let's hope she stands up for YOU with the specialists!

[MAT51]

Oh don't be daft I don't remotely expect you to keep up with my many posts or wide array of symptoms Annita - you have quite enough to cope with and are always on the mark with advice and supprt and I very much appreciate it.

I sent quite a fierce letter to the ambitious young dude of a registrar to convey my annoyance at his back tracking and refuting the implication that I'm only taking Cellcept because the rheumy team are giving me the benefit of the doubt that my disequillbrium and SFN improved dramatically with steroids last year. I made it clear that this career twit hadn't read any of the test results or my neuro's letter and led by giving me the info sheet on Rituximab - a treatment I've never asked about at all. I pointed out that my neuro had at least done her research very thoroughly beforehand and I didn't want her getting the idea that I'm ignoring her advice (although I am!). However SJS is principally a rheumatic disease and I was working on the basis that the rheumy must have interpreted my lip biopsy results and my +ANA 1:320 nucleolar more than neuro could, to be offering me these drugs? I pointed out that I may be seronegative for SJS but wouldn't be for Scleroderma or Polymyositis if symptoms for these tarried. I said I would prefer to see one of his colleagues next time for clarity. I copied in his two rheumy colleagues and also my GP and my neuro. People don't get to behave like this and get away it with me lol! Hoping this will put a spanner in the works of his job application at least!!

In fact, as you know, I've benefited from his incompetence so if Mycophenolate Mofetil works well for me then I'm winning and if it doesn't then I should be covered for further testing for additional autoimmunity especially Scleroderma. Thanks again for your input and I will contact the SJS expert if the MMF doesn't work out for me. I have a cunning plan to get sed rate checked tomorrow when having my bloods done in my old home GP practice. The Cellcept shouldn't have taken effect yet in terms of inflammatory markers and if it's low I don't need to tell them as they won't have access to my lab results here! X