PMR

[GT0512]

I have been taking pred 20mg for 4 weeks. I was diagnosed after a long drawn out process of tests etc that I can see from this is not unusual. My doctor is very good and is following guidelines to reduce so have been on 17.5 since Tuesday this week. The pains have started to return albeit not as bad as they were in the beginning. Would you suggest I persevere on 17.5 or go back to the doctor now to discuss?

[Runrig01]

If they are not too bad might be an idea to ride it out a few days and top up with regular Paracetamol. One of my Rheumys offered this advice to me: pain that starts quickly after a taper is generally withdrawal pains, and subsides over the following week; pains that build up over the days and is increasing in nature is generally a flare. Hope this helps, sounds like you have a good GP which seems to be rare these days. Good luck, Runrig x

[PMRpro Ambassador]

I presume you have been catching up on all you couldn't do while the pain was so bad? DON'T!!!!!

Just because you are now on pred and feel better does not mean your muscles are back to normal. In PMR the muscles become intolerant of acute exercise and that remains the case as long as the underlying autoimmune disorder is active. Your muscles won't tell you you are doing more than you should and then will take much longer to recover afterwards. Just going for a walk is the equivalent of running a mile when you haven't trained. You will be able to do more if you increase the amount you do very slowly - like walking for only 10 mins for several days, then trying 13 mins, 15 mins, 17mins and so on - doing the same time for several days each time. To start with you may need to do do it on alternate days to let the muscles recover.

If you get really tired - don't try to force yourself to do things, the muscles will just hurt more and take even longer to recover. Yes, the pred is to help you manage PMR, but you have to do your part and manage your activity too.

And as runrig says, pain that starts immediately is usually your body objecting to the removal of some of the pred. Some people are very sensitive to that, I was, and I never reduce more than 1mg at a time and even spread the reduction over a few weeks.

Here is a link to a post with the scheme I use:

healthunlocked.com/pmrgcauk...

A similar plan is being used successfully by a rheumatologist in the north of England and mine is being studied by another research group and quite a few patients on the forums have used it will success too.

[Celtic PMRGCAuk volunteer]

GTO512, yes, as Runrig has said, your returning pain may just be due to steroid withdrawal, especially as it is occurring so soon after reducing from 20 to 17.5mg. Hopefully, over the next week or so you will find that your symptoms improve again as your body adapts to the new dose. If your pain had started returning and continued building a good week or so following your reduction, then that could point to the dose not being sufficient to control the inflammation.

We can expect an improvement of around 70% in our pain levels within days, or even hours, of starting at the right level of treatment, and it sounds as if your GP is on the ball in not reducing you too far too soon. If you are someone who had raised blood test markers of inflammation at diagnosis, then these tests should be repeated before any reduction, so that along with your symptoms they can be used as a guide.

I do hope you feel an improvement in the next few days but give yourself as much TLC as possible to allow the steroids to do their job - especially important around a change in dose. In other words, on what appears to be a 'good' day, do not overdo things just because you feel you can as PMR has a nasty habit of coming back to bite on the next.

[GT0512]

Thank you all for your replies, really helpful and reassuring. Yes, although I've not being doing much I have upped my movement this week and was looking forward to going back to work next week as I was feeling much better. Will see how I feel over the next few days - once again thank you.

[DorsetLady PMRGCAuk volunteer]

Hi,

Recommend you try the slow reducing plan as per PMRPro's link. It really is much better, and you won't get the pains you describe. I always used to get them for about five days after an "overnight" reduction, now I don't. DL

[jinasc]

Both plans (PMRpro's) and the second one can be sent to you byt emailing - [e-mail]. Subject heading Reduction Plans.