struggling on 2mgs prednisolone for PMR. Anyone know what the usual increase would be to alleviate the pain and stiffness I am now having.

[Quine57]

started on 40mgs a year ago for PMR and GCA. No further headaches thankfully but shoulders ache most of the day

[Celtic PMRGCAuk volunteer]

Hello Quine57

You've done remarkably well to reduce from 40mgs just a year ago to your present dose of 2mgs.However, as you say your shoulders ache most of the day, then it seems you have been reducing more quickly than is generally recommended, hence the dose has lost control of the inflammation. If you can pinpoint the last dose at which you felt comfortable, then that is the dose you need to return to, whether it be 4 or even 5mgs and remain there for two to three months before reducing again.

I had a severe flare at 3mgs and my rheumatologist increased me back to 10, quickly returning back down as far as 5, via 7.5, but keeping me there for 5-6 months. It worked and I was then able to continue with slow tapering to zero.

It isn't wise to rush these reductions at the very low doses as the lower you go the higher the percentage drop which increases the likelihood of withdrawal symptoms and/or flares in the disease.

I hope that helps and wish you well.

[Hidden]

Hello Quine57,

I have just dropped to 2.5 mg after a starting dose of 15mg March 1st 2012.

I too am feeling it mainly in my shoulders, arms and neck.

For me I was totally pain free at 10mg, but with my rheumatologist's guidance, I am trying to cope as I need my steroid dose to be as low as possible to help with my ongoing weight loss programme. A warm bath, paracetamol, and keeping as active as I can helps , as does resting when I need to, and not being shy about asking for help.

Wishing you all the best,

Karen

[michaelegan]

Quinne57 Celtic has given you sound advice and if you follow it you should be pain free and Karen you will not gain anything by enduring pain go back to a level of medication that alleviates it. I wish you all a pain free 2013

Egan

[Hoogli]

Have just seen my consultant this week, and asked him the same question, as I am reducing too. He said if you get pain go back to the previous amount, if that has no effect ( should work within a few hours), phone your doctor and check. You might have to have a blood test to see if you are having a flare up, and you might have to go back to a higher dose.

The lower you get the more tricky it becomes, you have to stay on the lower amounts longer to establish a pattern.(?).

Hope this helps and you feel a bit better soon.

Judy

[Pipistrelle]

Agree with both answers above. It is hard to accept sometimes when we all want prednisalone levels to be down as much as possible, but dropping too fast means setbacks (flares) in pain and symptoms that slow down the entire process and there's evidence that the condition is more extended as a result. I think most of us learn this the hard way -- a flare that puts us back up on a higher level again.

The only exception to this I would say, is if you just dropped to 2mg within the last week or two. It would be common to have some pain with a drop right after the drop, due to prednisone withdrawal rather than actual PMR pain. I often had this type of discomfort and had to just sit it out and reduce activities for 2-3 weeks after a drop.

KizzyLizzy -- that's also a pretty fast prednisone drop in less than a year! It would be a lot faster than works for most people with this condition and you might want to check with your rheumatologist. Weight should not be an issue at 2 mg -- generally that's above about 10mg? So I wouldn't compromise your PMR treatment on that basis. If you've had this pain for a while then you do need to go back up to the last truly comfortable dose. It could be dangerous to your health to be on too low a dose as paracetomol won't give the cardiac/stroke protection we need, that comes from a correct level of prednisone.

All that said: many if not most of us I think find that we are never actually pain free during treatment. That seems to only happen for a lucky few! Many of us have daily morning pain/stiffness and also have to limit what we do but moderate exercise definitely helps. I think we all learn what feels 'normal' for us with PMR after the first few months of slow drops. If there's consistent pain at an level that doesn't go away, then that is a flare and the symptoms have reignited. The only way to dampen them down is to get on the right preds dose that will manage it and start very slow reductions again after that. I think men generally are more likely to be pain free on preds going on anecdotal evidence and men are definitely more likely (from studies) to have shorter periods of PMR than women.