Hi everyone

[diana1998]

I used to be on the other pmr/gca site but it suddenly stopped coming through. Shame as I had been on it for 4 years! Down to 5.5mg..a struggle but don't like going back up🙄

[DorsetLady PMRGCAuk volunteer]

Hi, welcome,

Why struggle on 5.5mg if another 1mg or even 0.5mg may help?

And what in particular are you struggling with, if you tell us, we may be able to help.

Can you put a bit of info about yourself, your illness -PMR or GCA or both, timescale etc on your profile please, makes it easier to answer when we know your history

[diana1998 in reply to DorsetLady]

Pmr 4 years after shingles jab😢 Got to 5.5 last March and very active (hosp started me on 30mg as totally crippled all over). Keep having mini flares in lower back and hips. Just gone back to 7 and better but don't like being a pred yoyo dieter. Last summer had to go to 8.5 as bad flare in hands. I know the ropes, go back to dose that controls the inflammation, stay there for a few days, then drop back. Most successful tip was splitting the dose one third, two thirds to control the pain in bed at night. Really helped at higher doses. Just starting physio in hip as had bursitis over busy Christmas. My story in a nutshell. I know so many people with pmr including my best friend. Seems to be very common now alas.

[DorsetLady PMRGCAuk volunteer in reply to diana1998]

It can be very distressing to have to increase - but you obviously keep going below the dose you actually need. Unfortunate, but that’s how it is.

I would say you’ve probably answered why this time around - a busy Christmas - and maybe the physio. Unless the therapist knows about PMR it doesn’t always help.

As for your comment about “very active”. Do you mean you were active before PMR or are active during it? If now, that’s probably not helping either. Ease off a bit and see if that helps.

[Koalajane]

Which other site?

This is the best one.

I am on 5mg and tapering to 4.5mg for the second time.

[PMRpro Ambassador]

Which one? Both the others I use are still there.

[diana1998 in reply to PMRpro]

The one with the pro EileenH. Posts suddenly ceased alas.. So helpful.

[PMRpro Ambassador in reply to diana1998]

No it didn't - it was always there despite the best efforts of their technical team!!! But you get the same service here - with added extras!!

patient.info/forums/discuss...

[diana1998 in reply to PMRpro]

Yippeeee! What a relief!

[SheffieldJane in reply to diana1998]

😂 You’ve found her, she is one and the same as our own PMRPro.

[diana1998 in reply to SheffieldJane]

👍😁

[Marijo1951]

I went down from 6.5 mg to 6 mg recently and within days my shoulders were terribly painful and I was starting to have difficulty reaching either high or low and couldn't wear a winter coat without a lot of discomfort. I went back to 6.5 mg and the extra 0.5 made an incredible difference. For the time being, and especially when we still need winter clothes, I'm going to stick to 6.5. I don't see the point of suffering for the sake of such a tiny amount.

[GOOD_GRIEF in reply to Marijo1951]

Winter weather doesn't help at all. This year I bought a new down coat that reaches below my knees. Because it's mostly feathers, it weighs nothing. I went up a size so I could move around some inside the coat.

[Marijo1951 in reply to GOOD_GRIEF]

Too late for this year (spent too much over Christmas). I'll remember the tip next year.

[GOOD_GRIEF in reply to Marijo1951]

They'll be going on sale soon...

[PMRpro Ambassador in reply to Marijo1951]

I always buy new such stuff at this time of year as they are usually half the price!

[Marijo1951 in reply to PMRpro]

Braindalley and Groupon tend to have bargains throughout the year. Anyway my New Year Resolution is no new clothes until my credit cards are all paid off!

[piglette]

Don’t try and beat PMR, PMR will win if you don’t get it under control. I agree it is really depressing going up a dose but it is probably worth it in the end.

[Oumaof2]

Hi diana1998. You have struck lucky finding us...

I'm going down from 6 to 5.5 end of the week🤞 Trial and error, patience is definitely a virtue 🙄