Some advice needed please

[spiritofhilary]

I have been happily tapering pred slowly and was going down to 4.5mg when I had to admit to myself that the pain in my legs, hips and wrists had been creeping up on me for quite a long time. I think I hoped they would prove to be something else (I don't know what!) Realising that it was indeed the PMR poking it's head above the parapet again and thought I'd zap it and go right back up to 10mg. I have been on that for five days and am feeling much more comfortable. I'd forgotten how much better it feels! My question now is how quickly I can try to reduce to find a lower level at which I'm pain free?

[PMRpro Ambassador]

You COULD drop back to just above where you were now - say 6mg if you think that was still enough. You say it has been creeping up for a long time - how long? At what dose did it start?

It is only when you have been at a higher dose for longer it is better to be slow.

[spiritofhilary in reply to PMRpro]

When I look back at my reducing notes I had to stay on 6.5mg for a while as I struggled when trying to get lower. Maybe that's where to go back to? Ive only been reducing at half mg per month with an OK from rheumy.

[PMRpro Ambassador in reply to spiritofhilary]

Sounds about right

[DorsetLady PMRGCAuk volunteer]

Hi,

Love your Jack, looks very similar to one we had for 15years. Brilliant (but sometimes exasperating) dogs. When she was a puppy she had gorgeous black rings around her eyes, looked just like Dusty Springfield - so you can guess her name!

Back to business - as PMRpro says if you think you're back on track, you could reduce now, the longer you stay at 10mg the more difficult it will be to reduce when you start again. But don't go down as far as previously - that obviously wasn't enough.

That's why it's a good idea to keep a note of how you feel at each reduction, that way if you have problem you can look back at your notes and go to the last time you felt okay.

Good luck.

[spiritofhilary in reply to DorsetLady]

Yes, my jack is typical. Called Ruby, she certainly knows her own mind! Have read PRMpro's post and think maybe 6.5 will do the trick. Thanks again

[Charlie1boy]

I had exactly the same experience at 4.5mg after just over two and a half years of PMR.

The advice I got from PMRpro was to go up to 7mg, and then, once ok again, taper back down. I was fine on 7mg,and stayed there for 12 days. Went straight back down to 6mg for two weeks with no problems, then to 5.5mg for 16 days, again with no problem. Currently, I am tapering to 5mg via one of Dorset lady's methods, and all is going well.

So, that has been my experience, if it helps. However, one thing we PMR sufferers all learn is that not all of us react the same way, so there is no guarantee that what works for me will work for you, and vice versa!

Strange though that what happened to me when I went to 4.5mg, was almost exactly mirrored by you. The pain in the wrists was totally new to me at that stage.

Good luck, and I hope all goes well for you when you taper down again.

Paddy

[spiritofhilary in reply to Charlie1boy]

Thanks for that. It's good to know I'm not the only one. Reading this wonderful forum makes me feel much less alone. As you know, most friends and family have never heard of PMR!

[DorsetLady PMRGCAuk volunteer in reply to spiritofhilary]

No they haven't- and unfortunately neither have some doctors - or at least have very little knowledge of it - as many of us have found out!

It's good to talk to people who know EXACTLY what you're going through, and don't faff about telling it like it is!

Take care .

[Sandy1947 in reply to DorsetLady]

I so agree. We all need support when going through all challenges...particularly those dramatically affecting our health.

I am thankful for my "peeps" on the forum for giving me strength and confidence to deal with the "gorilla" in my room!

[Rugger in reply to spiritofhilary]

I've had a similar experience this summer, when I had pains in both hip joints and shoulders, which was diagnosed as my PMR flaring as bursitis. I hadn't thought of that, as the pains were so different from those when I was diagnosed a year ago.

My GP and rheumy both advised an increase in pred from 4mg to 10mg for a couple of months or until my pains were 95% improved. The 2 months are up and the pains are virtually gone - the hips improved after 2 weeks.

My ESR and CRP are back in the normal range, having shot up. Click on my name and you'll see my last 3 posts which describe this summer's events!

Yesterday's blood test; CRP 3 and ESR 11 (from 14 and 54, 2 months ago). Yay!!!

Onwards and downwards now, but slowly, slowly this time.