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PMR - What do you wish you had known . . .

Posted by jabrown0407 @jabrown0407, Jun 21 11:15pm

Each of us has been on a journey with a disease that is not well understood, common but not identical symptoms and the steroid treatment is scary and problematic with its own side effects.
What is the one or two things you wish you had known early on that helped you put the pieces together and helped you better understand what is going on with you and your body.
Please share so we can learn from each other.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

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sbgigi | @sbgigi | 14 hours ago
In reply to @momac59 "@sbgigi Did you ask your Dr. to explain clearly why they decided on giving you 30..." + (show)
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@sbgigi
Did you ask your Dr. to explain clearly why they decided on giving you 30 instead of 20 mg? Maybe it was the severity of your symptoms coming back? I would definitely ask. I always ask direct questions like that to get those answers from the doctor who has made those decisions so I don’t have to wonder. I have learned to advocate for myself over the decades of dealing with autoimmune diseases & a big part of that is learning as much as I can about my disease and about the treatments. And that includes asking questions.
I, too have a lot of bad side effects from steroids. They have been a lifesaver but now that I’m better from recent GCA/PMR firestorm, I’m tapering slowly off prednisone. I was getting symptoms back when going from 30mg. to 20 so my Rheumatologist added a weekly shot of Actemra & it is helping me already. I will be trying to reduce prednisone dose tomorrow & am hopeful I am still ok. I am staying in touch with my Rheumatologist during this process. He wanted me to let him know what symptoms are coming back at each reduced dose.
Have you asked your doctor if you could try one of the biologics to try to help you taper off steroids?

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@momac59 Oh yes - I always ask lots of questions and even challenge when I think something is wrong for the 'whole of me', rather than just managing one disease pathway! I was on 20mg to start during my first 'firestorm/flare'. Reduced to 15mg within 10 days and almost all symptoms returned! So doc wanted me to go to 40mg! I refused and suggested 30mg, which he agreed. This has stopped the vast majority of the PMR symptoms, but has wreaked havoc in my life with the prednisone side-effects.
My doc is saying he will discuss 'steroid-sparing' drugs with me and possibly even a chemo drug to hopefully be able to taper off the prednisone quickly, since it is more life-disrupting than even the PMR flare! This is, of course, after me having to suffer the effects of the prednisone for 7 weeks... feeling very frustrated with the process and truly value all comments and help from this group!

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tweetypie13 | @tweetypie13 | 8 hours ago
In reply to @sbgigi "@momac59 Oh yes - I always ask lots of questions and even challenge when I think..." + (show)
Profile picture for sbgigi @sbgigi

@momac59 Oh yes - I always ask lots of questions and even challenge when I think something is wrong for the 'whole of me', rather than just managing one disease pathway! I was on 20mg to start during my first 'firestorm/flare'. Reduced to 15mg within 10 days and almost all symptoms returned! So doc wanted me to go to 40mg! I refused and suggested 30mg, which he agreed. This has stopped the vast majority of the PMR symptoms, but has wreaked havoc in my life with the prednisone side-effects.
My doc is saying he will discuss 'steroid-sparing' drugs with me and possibly even a chemo drug to hopefully be able to taper off the prednisone quickly, since it is more life-disrupting than even the PMR flare! This is, of course, after me having to suffer the effects of the prednisone for 7 weeks... feeling very frustrated with the process and truly value all comments and help from this group!

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@sbgigi your taper schedule is very steep compared to many of us. MY Dr said no more than 10% a time…..if after 3-4 weeks you are pain free for 2 weeks, then repeat process. Keep fighting , and asking! You should not have to live in pain. You are your own best advocate.

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