How long do you wait to know it's a flare?

[SapoKiko]

Hi folks, Kiko here, I'm a noob looking forward to learning and hopefully sharing my experience. Recent diagnosis of PMR, on 15mg Prednisone for 3 weeks and tried to lower to 12.5 (doctor suggested), and within 48 hrs felt horrible, so back up to 15, it's been a week but I still have so much pain.

I reduced right at Christmas, and shortly after got a horrible toothache, so dealing with both has been trying.

So, how long do you wait before you know there is a flare, and need to return to previous level? (I gave it 48 hrs)

Some things I already learned on this forum - reduction of 2.5mg may be too much. May need to go very slow. Really appreciate this forum, there seems to be a lot of ignorance surrounding this condition.

-Kiko

[PMRpro Ambassador]

Hi and welcome.

How long had you had the PMR symptoms before diagnosis? It is possible that the disease activity is still building - and having let in a flare it is harder to get under control again.

Did the feeling horrible start immediately you changed the dose or did it build up over the 48 hours you gave it? Basic lesson though: always choose a quiet time where you can hibernate a bit and not be forced to do things when you want to reduce the dose. And Christmas and New Year are really not ideal

[SapoKiko in reply to PMRpro]

Hi PMRpro, it took about 5 weeks for diagnosis, which is probably pretty quick given some of the stories I have heard.

The pain and fatigue built up over the two days, not immediate, but I guess definite.

Good lesson learned about timing to avoid stressful periods. My doc's original plan was to start w/15 and lower by 2.5mg, every 2 weeks. But go back to previous level if pain recurs. From what I am reading here that sounds way too aggressive.

Thanks! K

[PMRpro Ambassador in reply to SapoKiko]

Hahahahahaha - he doesn't know much about PMR does he!! There is no taper in the literature that I have seen that even dreams of that speed of reduction, especially in the early stages! This is a chronic condition, that is the sort of reduction for an RA flare when you are adjusting the other medication. Pred is THE medication for PMR, no options, so you have to use it properly. Did the 15mg work well?

I'm digging this out again despite its age:

rcpe.ac.uk/journal/issue/jo...

The author is now a consultant at Luton Hospital, UK, and she still uses this as the basis for management of her patients - because it works. It is criticised by one doctor for the total dose of pred compared with their approach but they didn't tell me the flare rate in their patients and they introduce methotrexate if a patient flares. Perhaps if these doctors had had PMR and experienced the problems they create by going at it like bull in a china shop they might be more reticent!

I am convinced that rushing the dose down in the first few months leads to a lot of avoidable problems. The trouble is - the doctors are terrified of pred and quite convinced patients all only need a low dose and for less than 2 years. If only ...

[SnazzyD]

I just had GCA but sometime during days 1-4 I would feel rubbish after a reduction with fluey aches, fatigue, headache etc, sometimes having to go to bed. The only time I had return of actual symptoms in that period was when my condition wasn’t well controlled already, due to an absorption problem so I wasn’t getting enough Pred. As PMRPro says, your schedule is a bit of a white knuckle ride and you may find withdrawal symptoms blend into each reduction period which may also make it more difficult to know if your are relapsing or not if it’s subtle.

[SheffieldJane]

Glad you found us SapoKiko. PMRPro has just saved you a shed load of pain! Welcome!

[DorsetLady PMRGCAuk volunteer]

Plenty of info, and advice, which you've already been given, but have a look at this - explains in more detail -healthunlocked.com/pmrgcauk...

and maybe have a browse through the FAQs - written by patients so more info and experience than your average GP! -

healthunlocked.com/pmrgcauk...

[SapoKiko in reply to DorsetLady]

Great post thank you - was just telling the wife my worst time of day is 4-6:00am. I usually wake at 4am with pain - what is it about this time? Is it simply the accumulation from a few hours of rest? Should I be going to bed at 8pm? 😄

[DorsetLady PMRGCAuk volunteer in reply to SapoKiko]

Have a look at this intro post - explains about the 4am shedding of pest cytokines - as well as a lot more - and no you don’t need to go to bed at 8pm - healthunlocked.com/pmrgcauk...

Stick with us, and you’ll learn a lot more than you ever wanted to know 😉

[PMRpro Ambassador in reply to SapoKiko]

That is when the new daily dose of inflammatory substances is shed in the body and sets of to create inflammation. The ideal time to take pred is 2-3am - then it is at its maximum in the system to prevent the cytokines getting going. Lots of people do wake to take it then, some of us are lucky enough to get a form of pred you take at 10pm and it releases at 2am but if you can't face nocturnal tablet-taking, the sooner after 4am you take the daily dose, the sooner it works and the less it has to do.

[SapoKiko]

And thanks to all who have responded so quickly and thoughtfully, much appreciated having support.-Kiko