I'm a newbie, and by the looks of it I have stumbled across a great site! I was diagnosed with PMR in January 2018, together with a diagnosis of Coeliac disease. I have osteoarthritis with three hip replacements, a fixation and a fused ankle - and currently awaiting surgery on my second ankle.
I began steroids (Prednisolone) on 20mg and managed to get down to 2mg about a week ago. However, I've experienced a flare up, shoulders, arms and elbow pain and the usual fatigue, so I upped the dose first by just 0.5mg and today by 1mg. I'm wondering if I should go to 4mg (double what I was on) for a while and would appreciate advice.
Thanks, in advance.
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Welcome - I do hope you have filled in your details on your profile page. It makes things much easier for us
You have done really well getting so low in what, 16 months. How long have you been sticking at each new dose before setting off on the next stage? Now you need to really creep along - you have both the PMR and the return of adrenal function to think about.
If it were me I would try 5mg for a few days and then drop straight back to 4mg if the 5mg worked. You may have to hit the inflammation hard first. The trouble is, it is difficult to know if this is just overshooting the dose you need or whether it is a real flare in the sense of a resurgence in disease activity. Creeping up rarely works - unless the new higher dose is enough it just lets the inflammation keep on building.
Because you have a much more complex medical history than I do, perhaps I shouldn’t be advising, but for what it’s worth I managed the taper down to 2mgm at the start of May (after 3 months feeling quite comfortable at 3mgm)
Then, like you, the proximals, shoulders/upper arms/upper thighs began to really ache, felt so tired, still do, couldn’t get up in the morning and back to pulling myself upstairs.
My GP has told me to take 10mgm for 3 days to blitz it, then reduce by 1mgm a day down to the 3mgm I was last comfortable at, and expects me to stay there for some time. The hardest thing to remember, for me anyway, is that we are only looking for lowest dose that works for us, and not to aim to get off steroids.
The experts will be along soon, but in the meantime hope this helps. You are not alone, this forum is so helpful, and it’s good you’ve joined us.
PS - when I wrote “the experts will be along soon”, there were no replies showing. Now it seems I’m bookended by / simultaneously posted with the best in the business so they are definitely already here!
I see my fellow Moderator beat me to it 😉 l would agree hit it a bit harder for a day or two with 5mg then go back to 4mg but consider coming down now in 0.5mgs so it’s not such a shock to the body as you have done so very well.
Depending if you are in the U.K. or not you can get 2.5mg’s or you can get a Tablet Splitter & divide the 1mg’s.
Welcome, I usually increase by 5mg and reduce after a few days. That has worked for me. But everyone's different and it sounds like 5mg would be a good place to start, as pmrpro says, especially as you seen to have been ok until this drop. That should give you a boost and get inflammation back under control.🌻
Hi, one thing you and I have in common is that I was dx'd Jan 2018 also. I have a wonderful Rheumie. They started me with 15 mgs and using DorsetLady's taper plan I am at 3.5 mgs. From 10 mgs to 4 mgs I reduced by .5 mgs.
From Feb 2019 to April 2019 I have hung around 4 (from 4.5 to 4). There was a flare but I popped up to 8 for one day and then went to 5.
From May to now I have reduced by .25 mgs and am at 3.5 mgs.
So I think you can see that I am trying to reduce very very slowly.
How do I feel? Good. Sometimes I get a niggle. If I over do and don't rest, for sure I get it in my shoulders, and/or fatigue, and/or pain in other joints. Rest has been a big help.
In my experience, if you hit a ‘flare’ go for a short sharp shock to kick it into touch. I’m still working on full management, but a couple of days at 25mg then 3 days at 20mg and 2 at 15mg are working. Plan to stick at 15mg for at least a month and reduce very slowly thereafter, with GP agreement.
I ws diagnosed December, 12th last year I got down to 4.5, however 2 days ago have gone back to 7,5mg because of flair. I may have to go higher, hope not, but will not be discouraged.
Thanks ! Just got from the park with Lily, dog. I walked for 26 minutes, covering a little more this day, without pain. Began to Have "cement" legs, sat for 2 minutes, stretching legs and back. Got up walked another 17 minutes. So am encouraged. Will do it again on Sunday, weather permitting.
Thanks ! Of course made ambitious plans to have a walk by myself this morning. However, not so well this morning, instead will go to grocery store for a few items and try to stay active around house. Is it the prednisone, the PMR or both that brings on terrible fatigue about 11-12 each day? Sometimes I try to "fight" through it, but generally have to lie down before I collapse.
I suspect it a bit of everything. A power nap is supposed to be good for you. If I feel a fatigue nap coming on I set an alarm for 30mins. Usually feel better if it's a short nap. I usually do 1 day where I do a more active day then less active the following day.
Yes, I do the one day off one on with Lily's trips to the park. However, as a compulsive type, I do get carried away some times. As regarding nap, I wish I could. I just seem to lay there in a half daze. Too much effort to open eyes to read, but cannot actually go to sleep. Oh well, better days to come.
Just the rest will help recharge the battery. If it is regularly about the same time, 11am-ish was the sort of time my wobbles due to pred would appear. I adjusted my timetable and had no more trouble - it only happened if I was trying to do something, shopping or the like. But by planning around it it didn't matter. I haven't ever needed a rest during the day in terms of not being able to manage to get through the day but when I do get the 10 ton truck of fatigue hitting late afternoon then all I can do is lie down and preferably sleep - I feel so sick I have no choice. But an hour or less will usually be enough to get me back to upright enough for the rest of the evening. Next day, after a sleep, I'm fine.
Since I last talked to you this morning, I had my shower and feeling, much better, decided to take that walk. There is a lovely 6 mile paved walk along the river not far from where I live, so Off I went. I did not take Lily because dogs have to be leashed. I actually was on my feet for 45 minutes, but not walking all the time. At my turn around point I sat for 2 minutes. Furthermore, a number of people stopped me to talk. After that I went grocery shopping. I don't seem to have the awful after lunch fatigue to-day. Middle of the afternoon, I plan to go half way down the hill to my daughter's house, Lily can play with her dog and cats, while we sit out among the trees with a nice glass of wine. I hope everyone is having a lovely pain free week-end.
That's so encouraging. Maybe your body adapting to lower dose of pred. I always have to go where my dog can roam free otherwise she is miserable and my arm aches!! Have a lovely afternoon and evening.
You’ve had lots of advice and as PMRpro says upping to 5mg for a few days then coming back down very slowly is the best advice. I got to 3mg once then had to go back to 5mg - I have difficulty getting back down as I did the first time round and can only reduce by .5mg at a time now. Am down to 4mg and it’s taken over a year.. if you experience the same then you know you’re not on your own. You need enough pred to treat your level of inflammation and that’s where we all can differ. Best wishes.
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