Flares and dose increases

[grannyouch]

After 4/5 days on 10mg from 41/2 I still have some pain. Should i have gone up further?? I wrote here a few days ago and to advice on increasing 5 MGS from last comfortable dose but I'm still exhausted and have some pain in my hips ( though my shoulders fell much better). I've been going up and down for about 3 years and getting so fed up!! Just hoping I don't have to increase even more.

Thank you all you wonderful people who give so much support. Unless you have a fabulous doctor or rheumy were so alone.

[SheffieldJane]

Do painkillers help at all? My osteoarthritis is playing up in this damp weather. To be pain free I imagine that I would have to go up to a PMR start dose which would probably blanket everything. I won’t do that at this stage. Too many accumulated Pred side effects now. It’s a tough call, I am sorry you are suffering.

[grannyouch in reply to SheffieldJane]

Thanks- it really sucks!! I am confused because I know I have is and I THINK my right shoulder is a separate issue from PMR... But I'm just not sure. It's also my hip/groin area which is confusing. It's similar to my old PMR symptoms.

[SheffieldJane in reply to grannyouch]

My PMR pain manifested in my groin area too, I couldn’t step into a bath etc. The similarity to your original PMR symptoms is a clue - it’s unmistakable . DorsetLady has a good plan.

[DorsetLady PMRGCAuk volunteer]

Maybe you haven’t given it long enough, and if you are showing a slight improvement in shoulders then that’s a positive.

Usual recommendation is between 5-10 days on higher dose, but you can go up to 14 days without have to do the slow taper down….

..so maybe a bit more time….and if that works a staggered step down might be better for you as you’ve had ups and downs previously. 10 to 7.5mg, stay at 7.5mg for a week, then down to 5mg. Stay there a month before you commence your 0.5mg tapers.

[grannyouch in reply to DorsetLady]

That's brilliant, thank you. I wondered about how long I could be on the higher dose. I also thought 71/2 would be better than down to 5 but was so unsure and it's comforting to have your guidance. It's a mine field, isn't it? And I thought I was beginning to win!😢

[DorsetLady PMRGCAuk volunteer in reply to grannyouch]

Fingers crossed.

[PuttyPenguin]

I agree with Dorset Lady you haven't given it long enough. However - if painkillers help, then it's not PMR!

[Alchemy8]

I find this distinction between PMR and other stuff still difficult too grannyouch (love your soubriquet!). Both seem to go during the day with the odd quick flare -bone/muscle ache but no bony lumps or bumps. I have been trying to drop from 20 for months now by 0.5 or 1mg. Now with the encouragement of my doctor who is the first medic in our local practice who is interested in my symptoms and has asked for second F2F next Friday I am now going to stick with it (dong the slow taper). I really level off at 20 every time I go back to it. I also am not tired which seems to be a general complaint though a rest in bed or what I call a pyjama day helps during the week.

[grannyouch in reply to Alchemy8]

Ooh, I like the sound of a pyjama day!!! What a good idea. It’s all (literally) such a pain, isn’t it? A lot of my pain is osteoarthritis- I think- but some of the pain and the exhaustion isn’t. I do hope you have better luck with reducing - let us know how you get on! X

[Alchemy8 in reply to grannyouch]

Bless you! A sense of humour will get you far!! Watch this space (ouch!).