Flares and dose increases: After 4/5 days on 10mg... - PMRGCAuk

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Flares and dose increases

grannyouch profile image
10 Replies

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.

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grannyouch profile image
grannyouch
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10 Replies
SheffieldJane profile image
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 profile image
grannyouch in reply toSheffieldJane

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 profile image
SheffieldJane in reply togrannyouch

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 profile image
DorsetLadyPMRGCAuk 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 profile image
grannyouch in reply toDorsetLady

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 profile image
DorsetLadyPMRGCAuk volunteer in reply togrannyouch

Fingers crossed.

PuttyPenguin profile image
PuttyPenguin

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

Alchemy8 profile image
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 profile image
grannyouch in reply toAlchemy8

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 profile image
Alchemy8 in reply togrannyouch

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

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