need help with pmr

[Antny]

I’ve had PMR since 2021 been treated with predisone starting at 15/20mg got down to 5mg with flares. My lifestyle is very stressful caregiver and diagnose with high BP snd afib year ago. Tried methotrexate and kevsara no help. Refered to Duke for help but just told should treat flares and further test on left shoulder. Now my rheumatologist wants to mycophenolate. Has anyone tried this med. just reading about it scares me but willing to try anything that doesn’t make me sicker. Can’t find anything about it being a steroid sparer. Duke did give me a shot of depomedrol a month ago which really helped. Any advice is really welcome I know my lifestyle doesn’t help.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, and cannot help on mycophenolate .

But sounds to me as if you need more Pred rather than throwing in other drugs which don’t seem to be helping, and yes you are correct your lifestyle doesn’t hep, but it’s what’s you do as a carer.

Do you realise you have posted twice… so I’ll copy this to the other one… but you might want to delete one if the other.

[suzy1959]

I have tried all the so- called steroid sparers but including Mycophenolate. I did this out of desperation because after many years of PMR , I hadn’t been able to reduce below 11mgs Pred. None of them worked !

Finally, since the beginning of 2024, after 12 years of PMR, I have been able to get down to 6.5 and still reducing. My body just wasn’t ready before. You have already done well to get to 5mgs.

[Antny in reply to suzy1959]

I didn’t last at 5 more than 3 weeks I think my stress levels get me. Did the mycophenolate do anything. I’m at 9 now going to stay here for awhile. The depomedrol shot really helped and people noticed I was walking better. Now I’m having a lot of problems with irregular heart beats not afib. Sometimes can’t figure what’s causing my problems.

[suzy1959]

I know nothing about the heart but because you benefitted from the shot, it sounds like you need more pred regularly. The shot will wear off in about a month . The Mycophenelate did nothing at all but there is always the risk of side effects for some people and no real evidence of any benefits.

[Antny in reply to suzy1959]

How long did you take mycophenolate before you stopped?

[suzy1959 in reply to Antny]

A few months

[PMRpro Ambassador]

If you got no benefit with Kevzara, then that calls into question whether it is indeed PMR - although pred and Kevzara both need to be used appropriately. Too many doctors expect magical effects with both without actually using them properly. Even they do not provide instant results - sometimes it takes more and for longer.

The most common reason for flares is trying to reduce the dose of pred to too low a level for the current disease activity. And if Kevzara is the same as Actemra, it will only get half of patients off pred altogether - the other half will get to much lower doses but their inflammation is due to at least 2 other mechanisms that these IL-6 inhibitors are not effective for and still require pred for that. I am astounded at how many doctors are totally unaware of that fact.

[Antny in reply to PMRpro]

Thank you for your reply I’m in overload and when Duke gave me the depomedrol injection and it made such a difference I thought my rheumatologist would think I needed more pred but he just wants me off pred so he adds another medication