Hello I have had PMR for some years now and have had 2 major flare ups in that time then spent years on prednisone. I am currently on 3 mg daily and have been on this dose for a about 18 months the Drs happy to keep it at this. In the last 2 months I’ve started to experience legs pains, it started slowly but now in the mornings thigh muscles and calf’s and back of my legs bum have various levels of pain. My thigh muscles feel very tight and I can not touch my toes anymore. Walking and cycling which I normally do every day has become impossible the last week 10 days. My GP tried a short course of boosted pred about a month ago 40 for 5 days then 20 for 3 days then return to 3 this helped I think but did not solve the problem since then the problem has worsened. The last couple of days I’ve started to get pain in my shoulders. Would this be a typical flare up it is different from my last 2 flare ups fro what I can remember. I worry because of the leg pain thing my brother died from MND so that is always on my mind as well
Is this Normal?: Hello I have had PMR for some... - PMRGCAuk
Is this Normal?
Sounds to me as if you have hamstring inflammation - and possibly trochanteric pain syndrome which can be part of myofascial pain syndrome and PMR.
Flares can be due to overshooting the dose you need - but they can also happen because of an increase in the disease activity and I have had at least 2, possibly 3, of that sort in the 16 years I've had PMR symptoms. The one that happened after I'd been at 4mg for months startd with aching thighs when walking on the level while we were on holiday and then spread everywhere else. A short course as you tried won't work when the disease activity is increased even slightly, it just delays the inevitable, scooping a mug-full of inflammation out of the slowly filling bucket. It means an increase in maintenance dose over a long period. How much remains to be seen ...
Thank you for this I saw Gp yesterday and he has put me on 60 x 5 days 40 x 5 20 x 5 10 x 5 then maintain 5. This seems a bit rapid, I have enough pred in stock to adjust this, is there a recommended regime? I don’t have a rheumy at the moment my last one discharged me when I moved regions within France last year. The GP is content to manage and I’m ok with that, I’m sure if I can get down to sensible regime he’ll be happy to Px. It may what the GP is thinking is ok?
That is a totally unnecessary approach for PMR and not long enough for a GCA flare. The short sharp shock approach doesn't work with either - it is a chronic ongoing autoimmune source of inflammation and requires long term use of pred AT AN ADEQUATE DOSE. The maintenance dose must be determined by a titration procedure, reducing the dose slowly to find the lowest effective dose and when you have a flare because of overshooting the dose you need as you appear to have done, there is absolutely no need to go to 60mg even for a day. That is just exposing you to steroids unnecessarily- I KNOW it is how he'd deal with an RA flare, PMR isn't RA!
The usual recommendation is to try adding 5mg to the dose where you flared for up to 10 days - and then you can drop back to just above where you flared immediately. You might like to mix his idea in by going to 15mg for 5 days, 10mg for 5 days and then see how you are before dropping to 5mg. I did 2 weeks 15, 2 weeks 10 and 2 weeks 5mg originally with absolutely no problems so that would also be an option that should work for you IF these symptoms are due to a PMR flare, they probably are.
Thank you I m pretty sure it’s a flare today is second day of 60 and all ready my shoulders feel much improved almost normal. My legs feel much better had no pain walking around as in previous days and I can touch my toes this morning something that was impossible yesterday morning, in fact could hardly get below my knee. I have already had today’s dose of 60, I get up early and always take meds first thing or I forget. I will follow your regime from tomorrow 15 10 then 5. As always thank you for the advice. If it’s ok I’ll let you know how I get on.
It just seems a bit OTT to use 60mg when a lot less would do the job - the side effects at 60mg aren't pleasant!
Hello so I followed the 15 to 10 to 5 mgs I’m a bit stuck between 10 and 5 seems fine at 10 a bit of pain but manageable. Dropped to 5 and after a couple of days became quite painful so went back to 10 and it was better now back on 5 seems ok for the moment. If the pain increases not sure wether to go back to 10 and start reducing by 1mg every 2weeks something like that or to increase from 5 to 6. Certainly seems like the regime was much better that the very high doses the go suggested
Not quite clear - did you drop from 10 to 5 in one go? I would have had at least a stop at 7.5mg inbetween and even that is pushing it in my book once you are below 10mg.
If you have some pain at 10 I would assume that 5mg was going to be very risky. You might be surprised how much differenc 1mg can make so 6mg might be a better and definitely worth trying providing you go back quickly and don't get into trouble with symptoms.
Yes I went from 10 to 5 then back to 10 now back on 5. If symptoms return I’ll go to 6 immediately.
If that isn't enough then maybe you need to try 10 - but do try not to do as large jumps in future - it often slows you down in fact as you end up getting into a yoyo pattern,
Thank you
Thank you for this I saw Gp yesterday and he has put me on 60 x 5 days 40 x 5 20 x 5 10 x 5 then maintain 5. This seems a bit rapid, I have enough pred in stock to adjust this, is there a recommended regime? I don’t have a rheumy at the moment my last one discharged me when I moved regions within France last year. The GP is content to manage and I’m ok with that, I’m sure if I can get down to sensible regime he’ll be happy to Px. It may what the GP is thinking is ok?
I hate to say this but I think some of my current symptoms are a bit like yours, although more in my shoulders than my legs. And I am coming to the unpopular conclusion that it is a result of longterm pred. I've tried MUCH more conservative increases in pred dose a couple of times lately and even after staying at the moderately higher dose for a few days and tapering back down slowly there has been no improvement, in fact I'd say over time things have been becoming worse. I'm inclined to blame this not entirely on the pred, but also on much decreased activity over the past year (conditions really beyond my control) which has caused me to lose a lot of muscle fitness and made me more likely to cause injuries just from normal daily living! I don't know what the solution is because I don't seem able to come off pred which would of course be ideal. Been on pred, mostly at a very low dose, since 2015.
That’s about the same time scale as me, l’m going to give PMRRro’s recommendation ago. I’ve been lucky in the main I have been able to maintain a good exercise regime throughout the lockdown. The last couple of weeks has been a bit off a struggle just to get myself moving. I shall try and get back to normal but without pushing too hard.
Hope things work out. Do keep in touch and let us know how it goes!
Hi there on balance the 15 10 5 regime is working just a bit stuck between 10 and 5, not sure wether to go 10 and reduce or increase from 5 until comfortably and then reduce back from there In 1 mg stages. All that said much better than I was and didn’t go with the very high doses suggested by GP. Currently at 5 mg fingers crossed I can stay at this with out pain increasing. Be great to get back to 3 or less
I personally don't believe anyone with PMR or anyone who has been on long term pred can drop from 10 to 5 without difficulty. If you want to avoid going as high as 10 again I still would not "creep up" slowly. This tends not to work. It's really not like taking an extra dose of aspirin or tylenol to deal with pain. Six will probably not be enough. Could you compromise and try 7.5? And dare I suggest that tapering from that level should be done in .5 mg steps? I've been doing that lately to deal with a flare, and because I've finally admitted whatever causes the PMR symptoms seems to be more active these days I'm going slowly and expect to have to slow down further.
This is what I've done, basically since we were last communicating through this post. This is, of course, a learning process for me as well: Went to 9 mg. Felt great! Stayed there for four days. Since then have come down by half a mg (.5) every four days. So far what seems to happen is I don't feel so great for a day or two after dropping by the .5 but by day 4 have been better. This is my fourth day at 7 mg and tbh I believe I'll have to stay here longer. At least I know if things deteriorate I only have to go up 1 mg. Possibly I'll need to restart a Dead Slow taper but I feel a bit safer, side effects wise, at 7 than when at higher doses.
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