Has anyone suffered my experience and what did you do?
I am on my first week of taking Mycophenolate and my PMR/Vasculitis pain has increased tremendously, so much so, I can barely function. Sleep is almost nonexistent. I was meant to take two tablets, but have started with one. I am not sure whether I should stop or not.
Thank you
In your place I would stop. I am done with meds that make you feel worse. I am not familiar with Mycophenolate so I can’t speak from experience. Pred suited me fortunately. Always seek medical advice.
You need to report it to your rheumy team asap and personally I would simply say no.
pubmed.ncbi.nlm.nih.gov/231...
Apart from this, most articles about the use of MMF are in other autoimmune disorders and while it is apparently well-tolerated in other things, 3 patients with GCA is hardly a resounding amount of evidence.
However - if a substance enhances the antiinflammatory effect of steroids, it can also enhance other effects, the ones regarded as "adverse" and I found that when I was trialed with methotrexate, it caused me to experience effects that are usually ascribed to pred that I had never had before such as joint and muscle pain, The same thing had happened to me with methyl pred - the adverse effects were horrible and it has a methyl group in its structure that is suppose to enhance the antiinflammatory effect so a lower dose is needed.
Didn’t suit me either. I stopped and informed Rheumatologist. This has happened to me with all steroid sparers except Tocilizumab and I can’t have that anymore. Rheumie says rules may change. I won’t hold my breath. Good luck.
Yes it did but there is a 12 month limit in prescribing (cost?) even though I understand it is prescribed for longer for RA
NICE claim it is because they weren't shown long term studies for safety. SInce they've been using it long term for RA for years you might think they know the long term safety issues ...
Interestingly, when I went to have my first infusion of a steroid which I couldn’t tolerate, I asked the head nurse if Toxcillizumab is exorbitantly expensive and she said no more than others?! Were you having it done on the NHS?
It isn't any more expensive than other biologics, or won't have been at the time. Recently one of the RA biologics has reduced dramatically in price, Humira was about 14K euros per year, now it is out of patent and biosimilars are being manufactured, Humira is down to about 800 euros per year. However, biosimilars for Actemra/tocilizumab are only just appearing so the price remains about £12K in the UK.
In contrast, pred costs under £100 per year, methotrexate costs a bit more (I can't look it up as I am not in the UK) and a study comparing the cost of a biologic for RA and that of methotrexate. Injections are more expensive than tablets but even using MTX injections worked out at a saving of over £9K per year relative to a biologic.
Thank you, that’s very interesting. I didn’t do well on Methotrexate either, I am hoping the specialist will try Toxcillizumab, at least.
In the UK he can only get funding approved if you have relapsed on a proven GCA diagnosis or as a special case or if your diagnosis is of Takayasu's arteritis. For GCA funding is limited to a year.
My rheumatologist told me yesterday that he is going to apply for funding for Tocilizumab as I am no longer able to take Methotrexate. We’re limited as to what I can take along with all the heart meds, that’s what he is going to base his application for funding on. I’m a bit concerned that he wants me to begin reducing Pred. faster than I want to.
It is likely to take a few months at least - it did me although down to 10mg wasn't too bad. But my guy told me to wait and only go 1mg at a time on a PMR level pred dose.
I’m not certain but I think he wants me to reduce by 5mg over a month, I am currently taking 10mg a day which isn’t controlling the pain. If I may not be able to begin Tocilizumab (if we get the funding) for a few months I don’t think reducing at the rate he wants is going to work. I did tell him I want to reduce at a very slow rate but he disagreed! Do I accept or do my own thing, another dilemma. Afraid of getting a reputation as being a ‘difficult’ patient.
Apart from anything else - from 5mg it isn't the tocilizumab that is important, it is the adrenal function returning. But no - reducing at 5mg per month right from the start is crackers even in terms of PMR/GCA/ Even TCZ takes time to kick in - and that came from a rheumy who has almost certainly used it a darn sight more than most having done studies and being able to use it a lot more here.
Oh of course I’d forgotten about the adrenal glands and also the time it takes for the tocilizumab to kick in. Thanks, I will use that info. when I defend my case.
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I am so grateful to you people
