I feel like a trader!

[Amkoffee]

I've had PMR come and go a few times over the years but this time (assuming it is PMR) this is by far the worse flare I've ever experienced. I've been taking Kevzara for a year and I've tapered to no pred a couple of times. I had an extremely hard year in 2024 and thought I deserved a vacation. Unfortunately it turned into a horrible disaster. It didn't even occur to me at the time that it was PMR. It wasn't until the day after I got home and went to the emergency room that I was told I probably had PMR again. The thing is I know the drill and in the past I've always started at 20 mg prednisone and within 2 to 3 days I'm right as rain. Well maybe not that good but you get the point. This time my pain is the worst I have ever experienced with PMR. I'd rather have three babies then to hand to go through this. I'm on day 4 of 20 mg of prednisone. I cannot move, I have fallen four times and have the bruises to show it. In addition to taking prednisone I started Kervaza a year ago and had hoped it would replace the prednisone. It doesn't look like its working for me at all. I know in the past people have shared taper charts. I've looked on Google and haven't found one that I care for. Most of them have you tapering entirely too quickly. Also I'm going to ask my rheumatologist this but I wonder how many people found they have to go up higher than 20 mg to begin with. Because I'm on 20 mg only about 50% of my pain is better. So that's it. It's not fair at all.

[PMRpro Ambassador]

Sorry to hear that.

Kevzara will be no different from Actemra - and it works 100% for only half of patients. Half of GCA patients have other mechanisms for the inflammation, we know there are at least 3, including IL-6, and Kevzara and Actemra only work for IL-6 inflammation so they save a LOT of pred but not all. If PMR is in the same spectrum as GCA, it is likely to be the same. I'm on Actemra, it has got me down to 7mg pred from 19mg but I can't go lower.

Our tapering approaches are all under Tapering in the FAQs.

[yogabonnie]

I am so so so sorry to hear about your pain and flare and the whole awful business. I hope that this time you will be able to taper slowly and successfully and feel so much better soon. My friend has just started on 25mg. so perhaps that would be better_? I have decided to stop the relentless taper to 0 . I am 7 years on and at age 78 figure the rest of my life on 2 mg. will be just fine. I hear too many stories of coming out of remission after being at 0 prednisone for a time. The rheumatologist I spoke to was useless saying PMR doesn't last more than a year and dismissing all my pain as osteoarthritis. And the endocrinologist wouldn't consider giving me a test for adrenals but did say 2mg. wont hurt me. And my wonderful primary says I am fine so keep on living and doing what I'm doing. I hope you are better soon. It is indeed SO very frustrating. Good luck.

[PMRpro Ambassador in reply to yogabonnie]

So glad your PCP is a bit brighter than that rheumy!!

[Amkoffee in reply to yogabonnie]

I am so frustrated with my rheumatologist because I have been with her for probably close to 10 years as I deal with PMR and some of my other health related issues in her expertise. This is the first time she has said that she does not believe that I have PMR just because the pains are not 100% better after 3 days of Pred. I agree that this time there are some differences then in the past. I don't know what to think but I know she won't and can't take me off steroids completely. I've already got a diagnosis of adrenal insufficiency so I will be kept on that much but that's only the equivalent of 5 mg prednisone. (And I was on that when all this came up. I'm 63 years old and at this point I cannot live with this kind of pain much longer. And I'm sorry I went there I have many health issues not just PMR. And everything seems to be getting worse.

[PMRpro Ambassador in reply to Amkoffee]

It is well known that recurrences of GCA and PMR can be totally different from previous episodes - I even wrote about a paper that had looked at it and found the same for GCA in particular. In view of the current thinking that PMR/LVV/GCA form a spectrum of disease that is likely to be the same for PMR - and all the PMR patients I know who have had PMR more than once say the same. It presented similarly but not identically, the response to pred varied and their journey was different,

Anyway - it isn't the label or how it behaves that matters - it is the care and symptoms relief in AI disease, They seem to ignore that aspect far too often.

healthunlocked.com/pmrgcauk...

[Rose8950]

yes, I’ve been there. I started at 20mg in November and felt 85% better after 24 hours. After a month my rheumatologist wanted me to drop to 15, which I did. It resulted in a flare that sucked all my energy up. Rheumy had me go up to 25 and then to 27 to get things under control. End of January , no pain but a little stiffness in arms. I’m slowly tapering .5 mg at a time. I’m now down to 25 mg but have to deal with fatigue. So my advice, taper down slowly and get plenty of rest. You cannot have the same level of activity as before with PMR.

[Amkoffee in reply to Rose8950]

And that is something else too. Not only is my pain so much worse but my fatgue is terrible. Just taking a shower wears me out for a couple hours. But the warm water does feel good.

[Amkoffee in reply to Rose8950]

I have no energy and find it nearly impossible to do anything. I have a little Cocker Spaniel and I now live in an apartment that I had to move into after I lost my husband in March. She's perhaps older than I am in dog years she's 14 and in poor health herself. It's a good thing we're both in poor health because she's okay if I don't take her for a walk. She has a potty place out on the back patio but I know that we both should go out and walk daily but sometimes she does not get a walk.

[Rose8950]

Get plenty of rest and take the Pred that makes you comfortable. After a month you can think of slowly tapering, .5 at a time is working for me.

[sidra1968]

For what it's worth, I had to go to 30 mg and my Dr. told me to stay there for 5/6 weeks to really get it under control.