Been on a bit of a journey recently after having seen another rheumy on the NHS where I was referred 18 months ago by my original rheumy when my health insurance came to an end. Original rheumy was no longer there having left the NHS. Cut a long story short, told to stop my statins, have had a vast number of blood tests, MRI of my legs & whole body PET scan. It is thought I now have" Idiopathic Inflammatory myopathy - likely immune mediated necrotising myopathy, statin induced? PMR'. Might have a muscle biopsy, waiting for opinion from Neurologist.
So I'm now being asked to go onto Mycophenolate & having read up a little about it I don't like the sound of it's possible side effects. Has anyone taken this drug, or know anything about it, as I'd be very grateful to hear of anyones experience or knowledge of it.
At the moment my legs are not working very well, feet 'slap' on the ground, I do go for walks but am pretty tired afterwards. I'm also getting migraine type headaches & find I have to wear sunglasses when outside or if it's bright, & wonder if that is related to my 'PMR' or anything else.
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Purpleprimate
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To my knowledge there are no studies using mycophenolate (MMF) in PMR although it has been looked at in LVV/GCA and really didn't shine! The general conclusion appears to be it is tolerated well.
However, Neil Basu in Glasgow had a look at its use in LVV/GCA relatively recently and come to the usual conclusion that it may merit more investigation.
I think the question has to be WHY MMF - is it because they don't think this is ordinary PMR? And I would want to see their thinking expressed in comprehensible text.
Whatever I have it appears to only be effecting my legs with not severe pain, stiffness, weakness & have some difficulty walking in that I appear to have lost some control. Walking is tiring.
Main points of consultants 'clinical impression'
'As I suspected at first appointment, the symptoms were not suggestive of PMR but more likely a myopathy.
'Consulting Neurologist, who specialises in autoimmune myopathies to ask whether a muscle biopsy would be required for a definitive diagnosis.'
'I believe we will need to add a DMARD medication (mycophenolate) to allow us to taper steroids safely.'
As I said previously I have been getting migraine type headaches, my neck on the left side is stiff & aches.. On standing my balance has become considerably worse & my eyesight becomes less focused, but this might not have nothing to do with PMR or anything else.
Frankly I don't feel very well a lot of the time, but better sitting down & usually feel fine first thing in the morning before I get up.
I would be grateful for your comments if you have anymore.
Certainly he is right enough that it doesn't sound very PMR-ish. The antibody tests will clarify things - wonder how long they take, What is your creatine kinase level - do you know?
But the bit of reading I have done - I still wonder why he's talking about MMF as it doesn't seem to get a mention in management. Why does he think it is required to taper pred safely? If it isn't PMR and pred isn't considered appropriate - why can't you just taper the pred?
On the 20th April 2023 my Creatine Kinase was 375 unit/L. Not sure what the antibody tests would be labeled as (HMG-CoA?) but I don't think I have them yet. I'm seeing the rheumy again on the 26th May. I've already told him I won't take methotrexate as I've tried that so maybe he is just looking for an alternative. I will suggest just tapering the pred, but the last time I got to 7/8mg I had real difficulties, but now knowing that I will take very very slowly. If I have my do have 'immune mediated necrotising myopathy' what's to be done with that?
Replies to my original post, it would appear that no one is having problems with MMF.
Many thanks for taking the time to look at this. It will be very helpful in asking the right questions when I next see the rheumy.
That CK is high - not mega high but a lot higher than it should be and that does indicate this isn't PMR, it doesn't cause muscle damage and raised CK. The diagnosis is a relatively new concept and I suspect your doctor doesn't really know what he is doing - at least, according to this recent article
is a bit heavy reading but it does have a section on treatment which says
"... initial treatment for SRP-IMNM usually starts with intravenous and/or oral glucocorticoids (4). Depending on the disease severity and response to glucocorticoids monotherapy, the treatment can be supplemented with other immunotherapy at the same time or within one month, such as immunosuppressants, intravenous immunoglobulin (IVIG), and/or rituximab (4). The goal of maintenance treatment is to minimize the symptoms with the lowest dose of glucocorticoids. Generally, steroid monotherapy does not control the disease progression and most patients required additional immunosuppressants to achieve improvement in IMNM (4, 6, 7, 81). A high recurrence risk by decreasing the dose of glucocorticoids is reported "
I suspect they didn't actually go high enough with the pred - if they say infusions that is usually for pretty high doses. I doubt MMF is the right immunosuppressant. IVOG and rituximab are far higher powered and it sounds as if that is where they should be looking and not something as low power as MMF. And it is his comment about getting you OFF pred - that article is saying lowest dose of pred in combo with the heavy duty stuff if required - worries me.
Probably wise not to mention names, but it's a large NHS London Hospital. He has copied his letter to a neurologist who has a special interest in autoimmune myopathies to ask his opinion & if he thinks a biopsy is required for a definitive diagnosis.
'I don't think there is a need for IVIG or Rituximab for now but these may be considered in case of relapses or refractory case.'
All the previous 3 eminent rheumies I have seen have not considered it was anything but PMR & since I was paying for them privately (after my condition was diagnosed as chronic) I'm quite grateful for the NHS because all the tests I've had would have cost a fortune if I'd have to pay for them.
I've no idea what immune necrotising myopathy is & the prognosis. I'm sure I will find out. I suppose I should Google it!
"IMNM patients with either autoantibody may experience fatty replacement of muscle soon after disease onset, suggesting that intense and early immunosuppressant therapy may provide the best chance to avoid long-term disability"
mentiones HIGH dose corticosteroids as starting therapy. That isn't PMR dose steroids and certainly not withdrawing steroids. That is the bit I don't understand, his desperation to get you off pred.
My appointment is the 26th May so will find out then what is going to happen. If you are interested I will let you know. I'm very confused as the PMR diagnosis was made over 30 months ago & initially I did have aching on my hips & shoulders but it's only been my legs for about the last 18months - can't be sure about the timing on all this as things have changed slowly. I have been taking statins for over 10 yrs but the consultant says they can cause problems at any time not necessarily when you first start taking them. Maybe one thing sets off another & given there is still a lot of ignorance on how the immune system works, who knows. I will be quizzing the rheumy hard. My wife does say my condition is much worse than last summer.
So not a great deal to add as far as my consultation was concerned. Wants me to reduce Pred by 1mg a month to 7.25mg & will see me in 3mths time. Am still waiting to see the neurologist & seeing a nurse about taking mycophenolate when I will then have regular blood tests. HMG-CoA were negative.
Now on 11mg Pred & have felt it a little going down from 12mg
Will go with it & make sure I lower the Pred really slowly listening to my body as I go.
Hi. I’m taking MMF and have had no problems with it. I have the usual blood test monitoring as it has the potential to cause some liver issues. But then so do many of the drugs we take. You normally start on a low dose and build up to an effective dose over time.
I did ask to go on Mycophenolate a few years ago because I had tried everything else! My Rheumy said there was not really any evidence for its use with PMR.I went on it, didn't have any side effects that I can remember but it did nothing for me so I came off it again!
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