Flare Update

[Alebeau]

Advice on flare working so far.

I was at 9 mg and having shoulder, neck and leg pains once again.

Advice I got from PMRPRO was increase by 5 mg for 5-7 days then reduce to 1 mg above where I left off.

So now at 10 mg for 9 days I feel very good and looking forward to continuing my slow reduction of .5 mg every month or two. I always seem to run into trouble at the 9 or 10 mark. I am 2 yrs and 5 months into PMR and am presently 72 years old.

[DorsetLady PMRGCAuk volunteer]

Well maybe that’s what your illness needs at the moment...doesn’t mean you won’t get lower in time, but not just now.

PMR can last anything between 2- 6 years, so maybe you’re one of the unfortunate patients where is going to be in the longer range.

[Alebeau in reply to DorsetLady]

I think so too.

The doctors were telling me otherwise at the start - maybe they didn't want to discourage me.

Thanks

[DorsetLady PMRGCAuk volunteer in reply to Alebeau]

Maybe, trouble is too many believe the 2year scenario that many of the guidelines refer to, which works for some....but not for all!

[Purplecrow]

Hi, i have been stable at 6 mg, for several months...until last week. What started as shoulder bursitis, grew into full fledged flare...back, hips, shoulders, even wrists. I was on vacay, in an r.v., I was miserable. After 24 hours of pain, I took 20 Meg pred, and pain dropped to tolerable level. Stayed at 20 mg for 3 days, then returned to my regular 6 mg. Much better, pain mostly gone.I was diagnosed PMR in 2013, and been up and down with prednisone dose many times during that period. In the beginning, I "drank the koolade", believing I would be off pred in a year...I diligently tracked complicated taper schedules...and always ended up at the level my body demanded...6 mg of pred for last several years.

Mostly I have good control of PMR, and at this point, I expect I will remain on Pred for next few years. Every once in a while, I try another gentle taper schedule...obviously not ready yet,..... so back to 6 mg.😁

We are always learning about this disorder, and how our bodies react to the things that aggravate us...eg., stress, other illnesses, and disruptions of normal daily patterns...

Well, that's my 74 year old story, good luck with yours.

Kind regards, Jerri

PMR diagnosed 2013.

[Alebeau in reply to Purplecrow]

Thanks Jerri, that is useful information to know - I am done with the koolade now after 2+ yrs and I decide when I can reduce - not them

Based on what I see on this site I am consoled that I'm in the normal curve for most PMR sufferers.

Good luck to you and everyone else

[PMRpro Ambassador]

When you repeatedly have problems at a similar dose it is usually your body telling you that you have arrived at what is at least an interim destination! Doesn't mean you won't get lower - just not yet!

[Alebeau in reply to PMRpro]

Thanks - good to know and be thankful that at least some progress is being made

[Thelmarina in reply to Alebeau]

To add to what PMRpro has said - I have twice attempted 7mgs and failed, yet comfortable at 7.5mgs. So just half a milligram can make the difference!

[herdysheep]

I am some 9 years in since diagnosis. Often got stuck at a particular dose, and, with hindsight, often cos I reduced too quickly. Now at my lowest ever - 5 1/2 which went quite smoothly but current bad bout of sciatica leaves me worried about a flare. Now I am in 'adrenal' area, don't want to increase pred if I can possibly avoid it. Rocks and hard places abound. Stay with it - we will get there, just don't know when!

[Avadip12]

Well what can I say, it’s such a frustrating illness . Just keep on keeping on. I have done that regime, it was such a relief to ease the stiffness again , and get up out the chair. Good luck, hope this stage passes soon

[Alebeau in reply to Avadip12]

Thanks, That ehort increase of 5 mg seems to have worked so far and yes it is frustrating. Good luck to you as well