PMR

[barbarac8790]

Hi fellow sufferers....so interesting reading all your posts. I was diagnosed about 5 years ago with PMR and that was after a year of hell where noone seemed to help me. Eventually I saw a gp who had several patients with this debilitating condition. I started off on 40mg of Pred a day and I hate taking them but we have to be able to function. I do have acupuncture once a month and this is is beneficial to me. I would like to know if anyone else has developed tendinitis. I recently have been diagnosed with this and been told it goes hand in hand with PMR. My gp doesn't really want me to increase the Pred and told me to use Voltirol 3 times a day.

[piglette]

Hi Barbara, you are right PMR really is the pits. What dose of pred are you on now after five years? I must admit I found accupuncture had no effect in my case at all sadly.

[barbarac8790 in reply to piglette]

Hi Piglette I'm down to 2mgs of Pred a day. Have got of the Pred 3 times in 5 years but the longest I lasted was about 7 months. I struggle to get under 5mgs.

[piglette in reply to barbarac8790]

Wow 2mg is virtually nothing. Perhaps this time will be the time you get off the steroids.

[barbarac8790 in reply to piglette]

It would be nice Piglette.

[PMRpro Ambassador]

Tenosynovitis is a common part of PMR. I'm not sure Voltaren is going to help - and even topical NSAIDs should be used with care when you are taking pred. However - you don't say what your current dose it, not 40mg I hope. It was actually rather a high starting dose for just PMR.

I had tenosynovitis in my hands and feet with PMR - but after about 5 or 6 months on about 15mg pred it had all but gone. Where is yours?

[barbarac8790 in reply to PMRpro]

Hi PMRpro I'm currently on 2mgs of Pred a day which is nothing I know. I struggle to get under 5mgs. My tendinitis is in my left arm. My GP sent me for an ECG to start with as she thought it was cardiac related but that came back as normal. I'm afraid to say I do not get monitored very well at all.

[PMRpro Ambassador in reply to barbarac8790]

If you struggle to get below 5mg and are now at 2mg - I'd suggest the first place to look may well be at whether you are simply at too low a dose of pred to manage all the inflammation. The whole point of the pred is to manage the inflammation - not taking enough to do that is a bit pointless.

Most doctors stop worrying about the dose once you are below 7mg, that is the amount of corticosteroid your body makes naturally in the form of cortisol which means the side effects are minimal for most people.

[barbarac8790 in reply to PMRpro]

Thanks for that PMRpro...what do you suggest I increase to?

[PMRpro Ambassador in reply to barbarac8790]

I'd probably just add 1mg at a time and see if I felt better. Or go back to 5mg and start over again. It depends on whether you subscribe to the going back up is failure idea. I don't - I take what I need to feel well - that is my main criterion so as soon as I feel less well, I stop reducing immediately.

[barbarac8790 in reply to PMRpro]

Yes I agree with that as we have to function. I've got my 87 year old father to care for too so lots of stress. Thanks for your comments.