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?
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?
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!
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.
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?
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
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!
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?
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. :(
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.
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.
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!!
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
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.
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.
Quote from: anita on December 14, 2016, 06:32:53 PM
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.
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.
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?!
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.
Quote from: quietdynamics on December 17, 2016, 07:50:11 AM
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.
"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.
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!
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
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.
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!
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