Mycophenolate: Hi -anyone been given mycophenolate... - PMRGCAuk

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Mycophenolate

Relative
Relative

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

35 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

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.

Relative
Relative in reply to DorsetLady

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

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Relative

I don’t know anyone that’s used mycophenolate, so can’t comment - there may be others that have - hopefully they’ll come along Idc.

You may well have better healthcare than UK - unfortunately at the moment that’s very likely.

Please let us know how your relative gets on with whatever alternative drug they are prescribed. All adds to our knowledge for future patients.

Relative
Relative in reply to DorsetLady

6 months of chemo after high dosages of steroid injections ( and oral steroids throughout), didn’t help so far unfortunately. Thanks for your input

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Relative

Are they 100% sure it’s GCA?

Relative
Relative in reply to DorsetLady

I will ask that question

Hidden
Hidden in reply to DorsetLady

I think a portion of the cost of Actemra should be counted against prednisone. It was interesting that the fact that I have taken prednisone for so long was given as a justification for trying Actemra. Furthermore, it was generally agreed that nearly all of the 9 medications I currently take were because of prednisone side effects.

You are correct that side effects of steroids are well documented and the benefits outweigh the risks IF steroids are used short term and in relatively low doses. Not true for relatively high doses and long term.

Even in the realm of uveitis, my opthalmologist who specialized in uveitis considered the number of relapses, severity of the inflammation and "steroid burden" and didn't hesitate to prescribe Humira which I believe costs twice as much.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

“I think a portion of the cost of Actemra should be counted against prednisone” - not sure what you mean or how that’s achieved.

I know you have a very chequered history with steroids, but for most of us it’s more straightforward.

For your info, I was on Pred for 4 &half years - cost approx @ today price £8,600 - and Actemra wasn’t licensed then in UK - so hypothetical.

Additional tablets -

AA - £46

VitD/calcium - £250 for duration of GCA, still on, so total £375

Cataract op - varies £2000 - £4000 (but I might have needed it doing anyway without the Pred who knows)

So taking worst case scenerio for op, a total of £4,5k for extra medication/treatment I cost the NHS around just over £13k

The cost of Actemra in UK is just under £11k per year, and at present only one year is authorised for GCA by NICE.

So if I had GCA now - and Actemra authorised I would cost the NHS (even taking the reduction in Pred costs) considerably more than I did.

Hidden
Hidden in reply to DorsetLady

It is all hypothetical. I just have a problem when cost of any medication is used as a criteria for determining whether any medication should be tried or not. If cost was the primary criteria there wouldn't be advancements in treatment of any disease.

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.

The same thing happened to me. I was discouraged from trying Actemra on this forum for similar reasons---cost and unknown side effects compared to prednisone.I almost declined it for this reason. I only agreed to try it because I didn't think it would get approved.

I don't have a crystal ball so for now I am happy that I didn't decline it. I don't wish to defend my choice at all. I do wish for support and encouragement and would like to share my experience.

I didn't even seek Actemra at the time it was offered. I was interested in biologics a couple of years ago but was told prednisone was the only option. That interest in biologics was derived from someone who sounded "just like me." Her experience with long term prednisone was catastrophic. It just depends on personal circumstances.

Relative
Relative in reply to Hidden

Thank you - this forum has less experience with actemra cause it’s Uk based. It’s classic for those needing something beyond steroids .

Devoid
Devoid in reply to Relative

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

Relative
Relative in reply to Devoid

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 .

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

“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).”

Hidden
Hidden in reply to DorsetLady

It may be factual but does it really need to be the very first response to someone seeking information about Actemra. Why does it have to be so negative all the time?

I'm not even that opposed to prednisone.

At least I haven't read recently that "Actemra is nothing more than an expensive steroid sparing medication."

PMRpro
PMRproAmbassador in reply to Hidden

I find it concerning that a lot of people confuse "factual" with "negative".

Hidden
Hidden in reply to PMRpro

There are always positive facts and negative facts. When facts are presented disportionately and in a one sided manner, people will form misguided impressions and conclusions. The facts about corticosteroids are not overwhelmingly positive for everyone. Likewise, the facts about a certain drug are not overwhelmingly negative.

The way facts are presented is also important.

PMRpro
PMRproAmbassador

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.

vasculitis.org.uk/about-vas...

Relative
Relative in reply to PMRpro

Thanks - very helpful- though to correct you there has been a specific clinical global trial on actemra for GCA ( published).

PMRpro
PMRproAmbassador in reply to Relative

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.

Relative
Relative in reply to PMRpro

Makes sense

My relative has a GCA diagnosis but gpa would have given her same drugs anyway....

HeronNS
HeronNS in reply to Relative

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?

HeronNS
HeronNS in reply to HeronNS

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.

PMRpro
PMRproAmbassador in reply to Relative

GCA and GPA are NOT necessarily treated the same.

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.

Relative
Relative in reply to piglette

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.

piglette
piglette in reply to Relative

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.

PMRpro
PMRproAmbassador in reply to Relative

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.

Hidden
Hidden in reply to PMRpro

Frankly, I don't wish to comment on the system in the UK and would never disparage it.

Relative
Relative in reply to PMRpro

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.

PMRpro
PMRproAmbassador in reply to Relative

It isn't JUST price - it is a set of factors and I thought you might be interested in this:

nice.org.uk/news/feature/ch...

Relative
Relative in reply to PMRpro

Yes we have similar issues where I live - if nhs needs more funding then I would hope the government would prioritize health.

PMRpro
PMRproAmbassador in reply to Relative

I won't get into THAT discussion!!!! Their claims and reality seem rather divergent ...

Hidden
Hidden

All that and your post is titled: "Mycophenolate"

Sorry, I know what mycophenolate is but I have never taken it. I have given it to patients but not to treat PMR/GCA.

I sincerely hope your relative gets the care and medication she needs.

Hi, yes I was given mycophenalate and it did nothing for me. I didn’t have any side effects either.

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