Hello ~ New here

[Islandgirlvi]

I was diagnosed May 2023. I went to the Dr because I was in so much pain and so stiff, felt like I my legs weighed 100# ea. I was lucky the Dr I first saw got me quickly to a RA Specialist (I'm still surprised we even had a specialist on our island) anyway, she had me on 20mg Prednisone. In Aug she started me on Kevzara 2x mo. We then started tapper in the Prednisone 1mg every 2 wks. I usually felt the drop for a day or 2 then my symptoms would settle down. it was ok until I hit 9, all the symptoms wouldn't settle down. I dropped to 8mg and took another Kevzara shot (which I'm not sure helps) and I went from bad to worst! I got to the point I could barely walk much less take stairs ( i have stairs at my apt & work) that was Christmas eve. I'm fortunate that my Dr communicates well via email & quickly. She immediately upped me back to 20 mg and after 3 days of more meds, I feel really good. But, I'm already noticing the nasty side effects, thin skin on my arms so I bruise & bleed easily, puffy face/eyes. I just stumbled on to your link and found comfort reading your journeys, I don't feel so alone. Thanks for Sharing! I hope we all have a lovely healing 2024 🤗

[PMRpro Ambassador]

I think it is quite likely whatever it is you have isn't only caused by IL-6 mediated inflammation. And at a guess you will be able to get back to about 10mg without too much difficulty, But you will will need pred for the rest of the inflammation.

[PMRpro Ambassador in reply to PMRpro]

Ooops - forgot to say hi, and welcome!

[Islandgirlvi in reply to PMRpro]

I was diagnosed with PMR ~ I see I left that out....

[PMRpro Ambassador in reply to Islandgirlvi]

I sort of assumed that - but doesn't alter what I said. PMR and GCA can both be due to inflammation caused by a few different mechanisms. Kevzara only works on one. that caused by the cytokine known as IL-6. If you inflammation is due to anything else, Kevzara won't work.

[Merryfield]

good old pred side effects. then you start growing a beard BUT you got down pretty low until the pain came back. you can do it again with help from the experts on this site.

[HeronNS]

Just curious why the doctor added Kevzara so soon. Did she believe it would help you taper quickly off the pred? It sounds like you're not sure it has even helped you, although I believe it must be considerably more expensive than pred? I don't really know anything about Kevzara, but as far as I know there is no drug which actually cures PMR. It goes into remission in its own good time, and the medications (usually pred although as you've found out newer meds are being experimented with, usually actemra) are supposed to help us feel okay while we wait for that to happen!

Was the pain gone with the pred? Did you taper at all without Kevzara or remain on 20 mg pred for those two months?

Sorry for all the questions, but it will help those who've had similar experiences offer useful advice.

And - welcome. There's nearly always some sympathetic soul online to communicate with.

[Islandgirlvi in reply to HeronNS]

She started me on the Kevzara hoping that I might be able to get off the Pred. because of all my symptoms coming back and me not noticing any difference after taking the shot, she's not sure the Kevzara is right, maybe too soon? @ 20mg Pred I'm pretty much symptom free at this point. But I walk my dog every night (boy friend does morning too) I'm still struggling getting up the hill (fatigue) and I haven't been able to get back to my small exercise routine yet.

[HeronNS in reply to Islandgirlvi]

The exercise thing is always a conundrum. On one hand we need to exercise to keep fit, both muscles and bones need the stresses of exercise. On the other hand, PMR-affected muscles object to too much strenuous or repetitive exercise. Usually it's best to, say, have a couple of shorter walks a day rather than a single long one, but it sounds like that might not work for your particular life situation. In any case, once you do have the inflammation properly under control and are able to start a slower taper of the pred you will likely find that things begin to get easier. It does take a while to get back to feeling really normal again, but we adjust. In my own experience I've found it not only helpful but actually necessary to arrange equivalent amounts for rest or recovery time as I've spent on either physical exercise or simply pleasant human interactions, like meeting up with a friend. It's astonishing how much this can take out of us while PMR is still relatively active. Be kind to yourself. 🍀

[SheffieldJane]

You needed to return to the Pred dose you were last comfortable at, with your doctor’s blessing. It is clear that the Kevzara has supported you as far as it can. This happened to me with Tocilizumab/ Actemera and I stopped it shortly after I reached 10 mgs. I had begun significant abdominal pains at this stage too. Use plenty of skin moisturiser for your main Pred side effect. Most of the side effects can be eased and made less troublesome . Unfortunately doctors give us the only really effective drug ( Pred) then heap negativity on it with dire warnings all the potential side effects. This makes us almost afraid to take it. Personally, I find the side effects of Biologic drugs much more daunting.

[Koalajane]

hi and welcome.

I found cutting my carbs helped my weight a lot.

It also put my steroid induced diabetes into remission.

Good luck with your PMR journey which will last as long as it wants to!

[PMRfacebook]

Welcome. Your GP had you on a very quick taper is you're already down from 20 to 9 mg since May 2023. Normally it's 1mg per month and then from 5mg it's 0.5mg per month - slow and steady wins the race.Sorry but it requires a lot of patience and accepting that you may have PMR for a number of years- adopt your lifestyle to help - keep exercising but moderately- light walks and swimming helped me, plenty of rest and healthy diet

This forum is a godsend for advice