Hi all, can you tell me about flare-ups not related to decreasing dose of pred. If there are any? How often? etc.

[fuzzybear]

I was diagnosed with pmr 2 weeks ago and am on 15mg of prednisolone, 800iu vitimin D capsules and 30mg lansoprazole a day. Am also type 2 diabetic.So far steriods have worked wonders, I have gone from almost totally disabled (can't get out of bed, dress myself without help etc). to being able to move almost normally. I need to know about flare-ups becouse I was so helpless I couldn't do anything for myself and if there is a chance of going back to that state I need to put help in place.

[PMRpro Ambassador]

As long as you are taking an adequate dose of pred to control the symptoms you won't go back where you were. The pred has done nothing to affect the CAUSE of the symptoms that are so unpleasant, it is dealing with the inflammation it leads to which causes the pain and stiffness. You have to wait for that underlying autoimmune disorder to burn out - it might be in a year or two, it might take longer. The first thing you do now is reduce the dose of pred to find the lowest dose of pred that controls the symptoms - 15mg does it but staying on 15mg for a long time isn't good for you. If you are lucky something about 7 or 8mg will do it nicely, maybe even less. Go too low - and the pain will come back if the underlying autoimmune illness is still active.

The other cause of pain is if you try to reduce the pred dose in too big steps, steroid withdrawal - reducing in steps of not more than 1mg at a time helps avoid that, spreading each reduction over a few weeks helps even more since some people are so sensitive to reducing the pred that they can't manage 1mg drops "overnight". The trouble is that steroid withdrawal symptoms are very similar to those of the original disease, people think it is a flare and jump back up their dose. Sometimes it goes away in a couple of weeks if you tough it out - but that can be difficult. Tiny steps works more gently!

If you go back to where you were it is due to mistreating your pred - pred is a friend not a foe and isn't something to rush off as fast as possible. You need a lower dose, yes, but not one you aim for as fast as possible. You will need pred for at least a couple of years, maybe longer. Never let a doctor try to tell you that you'll be off in weeks (some try it in 6 weeks and wonder why the symptoms came back), or even months. It won't work and you WILL be back where you were and totally unnecessarily.