Yes you are likely to start reducing - but it shouldn’t be based solely on blood results. The key thing always is symptoms- or rather lack of them!
Bloods are only in normal range because the Pred is working on the inflammation caused by your illness - not the illness itself. Not the same thing!
Your Rheumy will probably want you to reduce by 2.5mg to 12.5mg then same again to 10mg some can manage that, some can’t - need to do it in 1mg steps - so discuss options with him in case you have problems.
Also have a look at this - gives a bit more info, and maybe some questions to ask your Rheumy -
That's great thankyou. I'm feeling pretty good, have started running again and managing to keep pretty active with around 80+ improvement in pain. So symptoms are well under control 🙂
I've saved this post....my plate is full right now...but I'm going to have a heart to heart with my rheumy....he has me drop 8mg of methylpred at a time....and I feel, well....less than good. Terrific info!!!
Hi and welcome. It really depends how you feel. If you think your symptoms are under control that would be an indication that you can begin to taper, irrespective of good bloods. 4-6 weeks is quite usual.
I have been trying to control my PMR for three years. It’s a disease that seems to manifest differently in so many people. Just when I think I have this thing under control, I have a flare. The only way I have been able to taper down to 5mg of Prednisone is to do IV treatments of Actemra every four weeks. Nothing else works for me. It may be something you might want to look into.
That is not an option outside the USA - Actemra is not approved for PMR as no clinical studies have been done which is a usual prerequisite. I have had PMR for 15 years, 10 years on pred, much of it at above 10mg with only one relatively brief period as low as 5mg. It hasn't been an option even for me.
My rheumy is talking about biologics if the depo-medrone injections don't bring the inflammation down and control PMR symptoms. But what options are there in the UK? I've had trials of DMARDS, MTX and Sulfasalazine in the past and was taken off due to side-effects. I saw my GP yesterday and he says I should seriously consider other options to Pred. But thinking about it, although I was diagnosed 8 years ago, I came off steroids 3 years ago and only went back on (via injections) a year ago, which at first I didn't have frequently enough. Nothing has ever really got my ESR and CRP down except a course of strong antibiotics for unrelated cellulitis also 3 years ago. I'm just hoping the regular injections will work as I feel so much better on them, but as ESR and CRP are still high (45 and 26) I suspect my rheumy will want to try something else soon.
OTOH - a sort-of colleague of my husband's told me his wife had PMR but the side effects of pred were intolerable to her. He had a theory (not sure what mind you and he isn't a medical doctor but a scientist) which he discussed with the local rheumatologists caring for her in Hungary. They agreed to try long-term antibiotic therapy - after a year whatever was causing her PMR symptoms was gone.
He's mentioned 'a form of vasculitis, possibly, of which there are many'. Funny you should say that about the abx, I mentioned it to the rheumy and said the week I was on abx in 2017 was the only time I've ever felt euphorically well and inflammation plummeted from about 100 to 16. The docs treating me in A&E wouldn't let me have any more as they said the rest of the inflammation was down to PMR. I don't know why they didn't put me on an IV drip for 4 days like my brother had with a similar problem. The rheumy said 'well you'd know if you had an infection". I also mentioned it to my GP recently who said the same, apart from maybe a silent UTI but I've been tested for that in the past. All doctors pass the buck under the NHS 'transactional' system, 'Not my circus not my monkey'. Maybe I should go to Hungary.
I was diagnosed at 56 and went from running, golfing, Pilates etc to being unable to move. A starting dose of 20mg got everything under control and I felt rejuvenated and thought I could return to my active ways! How wrong I was. Once I started the first tapers as suggested by my GP it all went horribly wrong. Flared within first few months. Too big a drop and me thinking I could continue with ‘normal’ life combined to trip me up. I then found this wonderful forum and realised the enormity of what I was dealing with. This wasn’t going to be like any other illness I’d had in my lifetime, a few pills, few days in bed and all would be well - no way. Once I took control and read and listened to what was said on here things became easier and thankfully my GP was happy for me to control my taper.
Be careful of returning to running and all your usual activities. Give yourself a chance to respond to the steroids and don’t be fooled by your GP into reducing too quickly (or by your rheumatologist !)
It’s been a rocky road for me with many twists and turns. I’ve not run in four years but am now regularly at yoga and Pilates a few times a week and I walk my dog several times a week. I’m ecstatic with that as it took a long time to feel strong enough and able.
You may get back to it all as many on this forum have but give yourself time to come to terms with what has happened and fingers crossed you maybe one of the lucky ones who sail through this PMR journey.
Reading your reply heartens me. I try not to complain because I cannot do the things I did before PMR, but am grateful for the, somewhat limited, activities I can do now.
Love that response, so true, especially like the bit "realised the enormity of what I was dealing with. This wasn’t going to be like any other illness I’d had in my lifetime, a few pills, few days in bed and all would be well - no way." I didn't really understand what I'd got until it hadn't gone away after 3 years so I started trying to find out how to get help and luckily found this forum. I'd be very ill and in a far worse state if I hadn't taken advice from here and questioned the doctors.
Ooh, sobering message but thank you. I will make sure I pace myself and you're right, this may go south once tapering starts. Appreciate your reply, it's good to understand your experience and im sorry its been difficult.
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