Hi -anyone been given mycophenolate for GCA? My relative was put on high steroids , methotextrate and then chemotherapy and now this ( with steroids). I am very disappointed they haven’t given her actemra ( the biologic drug that is specifically for GCA rather than these old poisonous drugs that haven’t helped her , but seems to be the approach of the hospital to save money even though it’s not that expensive- she is in the UK).
So Has anyone else been given mycophenolate? Did it help? Side affects? Thanks
Written by
Relative
To view profiles and participate in discussions please or .
Compared to steroids - Actemra is expensive - more than £900 a shot - looking at NICE’s site - and is only approved in UK for 12months use for each GCA patient.
And no matter what drug anyone is on, there are side effects. At least with steroids they are well documented and easily managed - can’t comment on the others you mention, I haven’t been on them them.
As for Actemra, it’s not been used in the UK for long enough to know the full implications, but I believe in the States where it has been used for a lot longer there have been some concern over it. So be careful what you wish for.
I have read a lot about actemra and wish for it- steroids is not helping my relative. I live in Israel and it’s the standard treatment for GCA - we seem to have a better health care system than the nhs. You haven’t heard of use of mycophenolate in GCA? Thanks
Actemra is only approved in the UK for resistant cases of GCA - which I imagine means that the alternatives have also been failed. I am not familiar with mycophenolate being used in GCA, there have been no guidelines for its use in GCA although methotrexate is mentioned in the literature, and chemotherapy is also not a common approach although it is used in other forms of vasculitis successfully.
Actemra is not "specifically for GCA" - it has been used in rheumatoid arthritis for some years - but it does work via the IL-6 enzyme pathway which is implicated in GCA. However, it isn't the only pathway involved in GCA and the results show that about half of patients are able to get off pred while most of the rest are able to reduce their dose. For a few it doesn't work at all. It is not without its risks and the potential side effects are also considerable. We have had a few people on the forum who have experienced these serious side effects and had to stop it.
However, fundamentally - old doesn't always mean bad and old has the advantage that far more is know about the long term effects. The long term effects of using biologics are still to be seen.
But to be honest - 6 months of high dose steroids that didn't achieve anything does make it sound as if it may not be GCA. Are you sure there is no confusion and that it isn't GPA that your relative has? Mycophenolate has been used in refractory cases of that.
GPA is granulomatosis with polyangiitis and was previously called Wegener's). It is an autoimmune vascultis too and in its early stages may seem quite similar to GCA in some patients.
Excuse me - did I say there hadn't been? I am well aware there has been a trial and it is published. It has been discussed at length on this forum. It wouldn't have been approved for use in GCA without such a trial. What I said was the Actemra isn't specifically for GCA (that implies it was developed for GCA which it wasn't) - and it only works on one of probably 3 different mechanisms involved in GCA. If you have GCA because of one of the other mechanisms, even Actemra won't work.
Not necessarily. GCA can be treated with prednisone alone, although I know many patients are given a steroid sparer like mtx to assist with the taper. All of these drugs come with significant side effects so the fewer the better. And I echo PMRpro's comment that a lack of response to the steroids should be a flag to the doctors. Either the dose was never high enough (although that seems unlikely from what you tell us), or there is something else going on, whether in conjunction with GCA or as a differential diagnosis. As a matter of interest how was the GCA diagnosis confirmed? It would also help the people who know more about these matters than I do, like PMRpro and DorsetLady, to give you more advice to know what the starting dose of prednisone (or other form of pred) was, and how fast the taper has been.
I did find that mycophenolate is used as a steroid sparer and a small trial showed it to be as effective as methotrexate, and this: academic.oup.com/rheumatolo...
But is it possible your relative needs a chance for the steroids to work fully before other medications are added to assist the taper?
Just noted that in a previous post, about five months ago, you stated your relative had been treated for about a year for GCA without a good response to high dose steroids. As a prompt response to prednisone/prednisolone is one of the ways PMR and I assume GCA is diagnosed this would lead one, as we've said, to suspect something else is going on.
I do hope there will be some relief for your relative soon. It is good that they have some one like you to help them.
I think I would prefer to take old poisonous tried and tested drugs rather than new poisonous, relatively untested drugs, that is if they work. It does seem to me amazing that a doctor has been giving your relative a drug for such a long time that does not work for them.
actemra is not untested - there was a very serious study for GCA. In many countries in the world, less price orientated and less conservative than the Uk it is successfully the main drug for GCA.
Of course it is not untested as a drug, I never meant to imply it was. My wording was bad. It takes around ten to twelve years to get a new drug on the market and they have to go through extensive tests. However they are unable to know any long term problems at that point. That is what I meant by untested. The only way to know is time. A good example is Merck and Alendronic Acid. Approved initially in 1995 and only recently are we finding out some if its real downsides. In fact the same thing happened with steroids in the 1950s when it was thought a wonder drug and the side effects were not appreciated.
It isn't in any state-funded healthcare system. Corticosteroids remain the first line approach almost everywhere, even the USA, with Actemra reserved as at least a secondline medication - it will become more first line as the long term effects become clearer. But those studies are still ongoing.
But frankly - I prefer the risks of a system where I can be ill but guaranteed fair treatment that won't bankrupt me. In the USA and other privately funded systems there are a lot of people who have NO healthcare cover.
I agree with that - neither uk nor USA are only models - but I think the discussion on health systems does not help anyone. I only mentioned it because of the issue of price being a factor for deciding best drug options.
Hi I’m in the uk and am using actemera,having had steroids and methotrexate with little improvement, now 6 injections in and noticeable improvement to mobility and fatigue, when you say your relative has had chemo it probably is methotrexate which they try here for 12 weeks before the actemera is offered. Mostly to do with funding. Whilst I agree that the actemera is very expensive for the nhs I experienced over 4 months of getting worse each day whilst taking high dose of steroids and methotrexate and from 2 weeks of the injections could reduce the steroids and start to improve
She was on methotextrate and then on chemo - cyclophosamide for 6 months and now on micophenolate which is also called cellcept- all together with steroids- no actemra .
“I don't wish to compare the cost advantages of prednisone vis-à-vis Actemra. I only balked at your original comment to Relative who sought information about Actemra given the circumstances.
That comment was: "Compared to steroids - Actemra is expensive - more than £900 a shot." That comment seemed inappropriate to me.”
Not inappropriate, just factual. I was just responding to Relative’s comment of-
“I am very disappointed they haven’t given her actemra ( the biologic drug that is specifically for GCA rather than these old poisonous drugs that haven’t helped her , but seems to be the approach of the hospital to save money even though it’s not that expensive- she is in the UK).”
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GCA -conflicting advice 
Hearing & Jaw still affected after full sight loss
Tapering experience
Blurred vision - alternatives to Tocilizumab
