Uptate on new rheumatologist and Mycophnolate (MMF/Cellcept)""

[MAT51]

Hi - I thought I would update for anyone who has followed my Sjögren's story. I met my new rheum yesterday. I think she's very good and will suit me well. She is a very fast thinking, decisive type and I did feel a bit rushed into decisions but this is nhs Scotland and she's very busy. However the outcome was that, providing my liver ALT settles back down she would like me to go up to the highest dose of MMF, 3000mg, and start Viagra for my Raynauds and Hypertension. I then had a nailfold capilliary test which excluded Scleroderma thankfully. She seemed to think that all of my symptoms corresponded with my confirmed Sjögren's, making it my main or only connective tissue disease. This included the GERD, Raynauds, SFN and recent sinusitis plus tendinitis and synovitis. She feels that the constipation is dysmotility due to autonomic dysfunction. I'm keeping on top of this quite well with osmotic and laxative treatments - same with eyes and mouth. I'm struggling with painful SFN in lips and gums as well as peripheries just now though and Raynauds and GERD have been very troublesome lately too.

But all in all I'm glad we have moved to the mainland with less wind and this new rheumatologist in a famous teaching hospital.

[Tharrell]

I'm so glad you found a rheumatologist you like! I have just one question. Why is she starting you with viagra which is generally used after the lesser meds like nifidepine or norvasc have failed?
I was started on norvasc, which didn't help much and changed to nifidepine, kind of a side way move. We tried the nifidepine in the hopes it would help calm down my jackhammer esophagus and it's related spasms.
I would like to try the viagra myself and will ask my rheumatologist about it yet again!

[MAT51]

Good question Tharrell! It is because I've already tried Nifedipine and Amplodoine and had nasty intolerances. I'm already on Losartan 62mg and my BP is still too high so she felt it would not do any harm for this either. My only real concern, apart from obvious side effects such as headaches and dizziness, is the possible colour blindness because I'm an artist. But my brilliant optician just reassured me that this would only be very marginal if anything. I'll report back when I've tried it.

[anita]

Sounds like you have a good doctor.  It seems she was attentive, and although quick to get done, she covered everything on your list for discussion.  So glad the nail-fold test was done and negative.  But what did she say about the skin changes...that are not common with Sjogren's??

Keep us posted on how the new meds work for you.  I'm sure she will find the right combination to work for you...and this may be perfect.  Don't worry about side-effects.  Think positively that it will work without any problems.  Many people can actually create side-effects through anxiety.    Not that I have seen you do this with your meds, but always best to just put side-effects out of your mind until something occurs...then look it up.

After such a long time and struggling to find the right Dx and treatment, it appears you have found the answers that are best for you.  Maybe the 3000mg dose will bring about the changes you need to settle down all your symptoms.  Keeping fingers crossed.

[MAT51]

Thanks Anita. Unfortunately side effects tend to find me and then I ignore them until they have become severe. I had to go to GP today as urgent case because of massive pain flare everywhere. I mentioned ear pain and she looked and almost shouted with surprise because my ear is very infected indeed but I'd only mentioned it in passing. Second lot of antibiotics in a month now.

This GP apologised for her colleagues failing to inform me about my high ALT and other LFTs - so rheumy had assumed I knew about this She thinks this is probably because I've been taking maximum dose of paracetamol for sinus and throat infection for the past month. She says it could be combination of this and the Mycophenolate as my LFTs were fine and dandy before I started taking the paracetamol. She says they can't let me try higher dose until this has settled and I may even have to stop taking it for a while until liver settles. Thinking second course of Amoxicillin in a month won't help my liver readings much!

But this exceptionally good GP said today also thinks that what I've assumed to be GERD and Gastritis is in fact oesophogal spasms as the usual stomach protectors and Gaviscon haven't helped at all. Says this could be Sjogren's related autonomic dysfunction same as my rheum says about my constipation. In a way this gives me hope today because the pain in my peripheries and jaw arthritis are so dreadful that I'm really desperate for pain relief so I think I'll try some naproxen later on and not worry so much about the horrible spasming in my chest and back now.

Rheum confirmed that all colour changes in skin can only be  Raynauds - SFN doesn't cause colour changes although they can overlap of course. I showed her photographs of my hands and feet and she just nodded and said quite clear - Raynauds secondary to Sjögren's.  I didn't see her after the nailfold test but she's faxed the viagra Px so i assume she is confident that my Raynauds warrants this. Maybe it didn't show up in nailfolds because it's sudden onset and only started a few years ago and has only really affected my fingers severely this winter? The young trainee rheum student told me that she was only looking for Scleroderma because this can cause tissue death - didn't seem aware that Sjogren's and Lupus have their own capilliary pattern? Maybe I needed a more experienced technician but she was the only one available - story of my life eh?!

I'm thinking that I may need to push for autonomic testing and SFN skin biopsies again via my new rheum. Neurologist has relegated me to yearly reviews now. I do feel like I'm falling apart again with pain in feet, shins and knees but she instructed a blood test, CPK, for Myositis too. Guessing my PV and CRP will be pretty high again when tested tomorrow.  X

[anita]

You know how I feel about autonomic testing and skin biopsy...push for it!!  More information is always better and may help to pinpoint best treatment options.

Your brain cannot focus on one location (like ear infection) when there is such wide-spread pain.  Hence why doctors do a 'once-over' of the entire body when someone comes in with wide spread pain/symptoms.  Great they found this and get treatment started. 

I'm still a fan of you being testing for subclass deficiency.  You have had IgG tested, but not IgG subclasses.  CVID is VERY common in Sjogren's...25%.  It woyuld explain the numerous infections you've had.

[irish]

I am with Anita as a good many people with autoimmune diseases can have immune deficiencies and not know it. The subclass IgG levels can be affected very often. I have 2 low subclasses and my hubby had 3 lower subclasses(he had Celiac and Microscopic colitis) and he was on IVIG for while also.

Also, when they check the subclasses it may be wise to check and T and B cells and whatever else they think is necessary. I had no clue that I had severely love T cells until my immunologist checked all these things on my first visit.

Having these tests done could sure make a huge difference in the way that your symptoms and disease in general are treated and could save you time, money and suffering in the long run. Any time the autoimmune is an issue the immune and allergy issues can be involved. Good luck. irish

[MAT51]

Okay thanks- I don't see the rheum again until 22 August so a while to wait before I can ask. I'm guessing they will point out that I'm on an immunesuppresant so am going to be more vulnerable to stuff like this from a basic cold virus though.

She did ask me about my tendency to have drug reactions such as anaphylaxis a fair amount of time after I've started the drug - which she observed is unusual. I wasn't sure what she was implying though - so I rather defensively pointed out that I had put up with severe nausea from Methotrexate for a few years before finally saying enough is enough. I'm hardly a non compliant type overreacting to the smallest sensitivities? But perhaps that wasn't what she was angling at at all?

Anyway next time I will ask more about MCAS and this IgG subclass resting and IViG. My IgG was raised last time it was tested a year ago. Is that relevant as, if I was deficient, wouldn't it likely be low rather than elevated?

Lots to think about. I'm finding Dihydrocodeine with Biofreeze gel are getting me through the nights but I'm having to slug constantly at Lactulose syrup and Senna Syrup to keep even basic movements vaguely on track. It's the only pain relief that doesn't affect my liver badly though. But I had wondered if it might be causing my oesophogal spasms as these have worsened over the past month since I started taking a nightly Dihydrocodeine?

Anyhow thanks very much Anita and Irish for your help - as ever. Xx

Ps The pain in my legs is really horrible again just now - this flare has lasted for at least five weeks. I have a bad tendency to understate pain. I was apprehensive that she would tell me same as another forum user with polymyositis had experienced with her of being told that it was Fibromyalgia because her bloods showed inactive disease. This forum user was furious and warned me. I really must learn to be more open about pain though because, in my case, I've never had pain without a serious physiological cause. It's just a matter of doctors helping me to track down the source that I struggle with! They have a bad tendency to presume the cause rather than seek confirmation. This in turn leaves me troubled and doubting - always wondering if they are correct in their assumptions. This is why I made her look at photos of the colour changes in my hands and feet.

[anita]

If I remember correctly, you had infection issues long before you started taking Cellcept.

Honestly, I doubt you can be tested now that you are on Cellcept.   Obviously, it would alter the results.  Likely have to come off (3 months), or do the testing after you've stopped taking it (if you don't have more symptom relief after increasing to the highest dose).

[MAT51]

Yes you are remembering correctly but again it could just have been coincidence because I had flu and pneumonia in 2015 directly after having a terrible time getting off Duloxetine/ Cymbalta - then was diagnosed with and treated for a UTI sepsis when newly on Imiran/ Aza - probably drug induced pancreatitis and then a post op would sepsis while on Prednisolone and following the wrong type of surgical procedure. So most of these bad things are more likely to have been drug related than the result of immune deficiency I suppose. And this is why I think I might have a Mast Cell Activation disorder really. And hopefully the Cellcept wouldn't deter a haematologist or immunologist  from being able to look into this.

Meamwhile I think my last ditch pain medicine is going to have to bite the dust too. This is Codeine - which a surgeon warned is is like a poison for me personally and it looks like he was right. Abdominal swelling and pain relating to constipation means I'm suffering additionally to the horrible burning limbs now and the more attempts I have at laxatives and osmosis, the more painfully blocked up I become.

[irish]

I think it would be wise to get the immune deficiency checked out cause you are having some wicked infections while on some of these meds. Back in 2005 I was on Methotrexate and doing better and developed a bad infection in my throat and sinuses which cultured out MRSA. I also was up to the University and they did a cat scan of my throat and neck and the next thing I knew the docs up there were calling and saying "get back up here now".

Another cat scan of chest and abdomen showed that I had lesions in lungs, spleen and liver. Another sputum culture that took 6 weeks to complete showed that I had Mycobacterium kansasii. I ended up on medication (8 pills a day) for one year.

This is an infection that mostly people who are immune compromised get. I finished my meds in May of 2006 and saw my new immunologist that month and he did a lot of blood work. I had severely low t-cells--as almost as bad as HIV patients only I didn't have HIV. This immune issue was related to the autoimmune issues that I have. Immunologist said that this is why I had the infection while on Methotrexate plus I had a whole lot of infections that started to show themselves in the 1970's.

Over the years my doctors would scold me for coming in for antibiotics so often but no one ever thought to check and see why I had so many infections. So, given my experience I am of the opinion that those of us with autoimmune should not assume that we don't have immune issues. My immunologist said that the T-cells I did have were working overtime to keep me from having infections.

Normal t-cell count that he checked should have been around 1100 to 1600 and mine at one point were 328. Doc was afraid I would get the specific pneumonia that HIV patients get and he checked in on me often for some time. You could have knocked me over with a feather cause I would have never guessed. The interesting thing was with the kansaii infection I had no symptoms....no cough, no sweats and no weird sputum. I was lucky to have had MRSA so that they caught the kansasii. This is one of the issues with the immune deficiencies. A person doesn't raise a temperature most of the time and doesn't have the other symptoms of infection so that we can get really sick really fast.

Just my take on this issue. Good luck. Irish

[MAT51]

Thanks so much for describing your awful but illuminating experience Irish. My new rheumatolgist does seem on the ball so I will defintely get in touch with her if this ear infection doesn't clear or more infections emerge. Either the antibiotics or Dihydrocodeine or the infection itself or other are really laying me low just now with horrible GI discomfort. I feel lousy so this is unsustainable really.

Also the SFN or whatever it is (I've lost faith in some of my presumed diagnoses I admit) is causing me such dreadful pain in my feet and legs again that I have a feeling Mycophenolate/ Cellcept might not be the med for me. Although I did try out a theory on the new rheumy that it has regenerated my tiny nerve fibres so the previous semi numbness and resulting disequilibrium have improved but I'm in extraordinary amounts of pain again. This was when she suggested increasing my dose to the maximum amount.

[irish]

I don't know how long you have been on the Cellcept, but it can take up to 6-8 months to have significant results. Everyone is different, but it generally doesn't have  big noticeable effects very soon after starting the drug. I don't remember but are you on any drug like gabapentin for neuropathy in your feet, etc? People with Sjogrens can have neuropathy in feet and legs and probably anywhere else.

I know that years ago prior to diagnosis and long before diabetes I had neuropathy  below my knees down into my feet---the burning, prickly kind plus the aching. Putting my legs in bathwater would hurt and I had trouble getting the docs to take me seriously. I know that I would wear the support hose that covered feet up to below knees to bed at night as my legs were always cold. I would also lay at night and just wiggle my toes cause of the discomfort--Naprosyn was what I used for the pain and it helped some. I had no diagnosis then or for many years so had no idea what this was. It lasted over a year and then left but comes back off and on.

Autoimmune disease is just plain fickle and hard to nail to the wall cause everyone is different. Take care. Irish

[MAT51]

I've been on 2000mg Cellcept for 5 months now Irish. Gabapentin gave me a drug induced personality disorder according to my hubby, but from my perspective it just made me very dizzy and had me seeing double! Amitriptyline was the one of nerve pain drugs I did best on and I took it for 3 years but I was so tired on it, it made my eyes formidable dry despite lavish use of drops and latterly it caused severe heart palpitations. Naproxen gave me terrible gastritis although I loved it. Basically I'm a big pharma nightmare! My neurologist wants me to try Norotriptyline and I'm getting very close to the stage where I might just stop resisting

I'm not even prediabetic yet but I'm an appleshaped shortie with family history so it may well happen. I'm thinking that there may be more to this pain than SFN because of the Raynauds crossover but my years of need to know what it is and where it's heading is rapidly being replaced by a need to kill it dead with whatever it takes LOL!

[irish]

I know the feeling. I kept going to the doctor with all my problems because I wanted to know what I will die of. Irish