Another Flare

[Donna5658]

Hello all,

After returning from a mini family reunion out of town for a week, followed by visits from out-of-town friends, I realized that my PMR was in full flare mode. (I still haven’t gotten the hang of managing “good stress” generated by happily being with family/friends, plus the triple chocolate brownie and other “bad” eating on the trip didn’t help matters.) Pain in usual sites and much more fatigue. I tried upping my dose from 7mg to 12mg for 5 days, which didn’t seem to touch it, so I went up to 20mg, which I have done for 3 days.

The 20mg is working and symptoms are almost gone. I have the usual question — how do I calculate the 14 days of increased dose before dropping back to just above where I was in the tapering process (7mg), which seemed to be working fine. I’ve been on 12 mg for 5 days and so far 20mg for 3 days. 6 more days on 20mg and I have reached the 14 day limit. Can I then drop straight back to 8mg (1 mg above where I was when the flare started) or should I do a step-down? I am pretty sure I can attribute this latest flare to the stress of traveling, bad eating, less exercise and pushing the limits a bit. I am now back on track for my usual healthier approach, but it is definitely a setback.

Any input on next steps for tapering would be greatly appreciated!

[PMRCanada]

I’ve done about 10 pred bursts throughout my 6+ journey with PMR….all “successful”.

The inflammation/disease level at the first part of my journey were high (likely due to 6 months of worsening, undiagnosed PMR). So my GP instructed me to stay on 20mg for 6 weeks. I then began a succession of 7-week tapering regime dropping to 15mg initially, then 12.5/10/9 (where I got stuck).

My usual pred burst is 10 days in length. I add 5mg extra pred for 2 days, 4mg extra pred for 2 days, 3mg extra pred for 2 days, 2mg extra pred for 2 days, and end with 1mg extra pred for the final 2 days. For example if I flared at 5mg I would add 5mg equalling 10mg 2days and so on. 5mg/10/10/9/9/8/8/7/7/6/6/ 5

This being said we are all different. Some flares build up over a long time and are more severe and require longer time at increased doses. We don’t want to go up, but sometimes it’s required to clear out the inflammation. It’s not good to yo-yo the dose up and down…slow and steady, even a number of weeks at the new dose is sometimes necessary. Quality of life factors in.

Managing the “good and bad” stress that life provides takes awhile to learn as adjustments are made for living with PMR/GCA. Listen to your body….it will remind you when you’ve pushed to far. I have learned to pace myself and be flexible but PMR is in the driver’s seat. I have a full, enjoyable life with PMR….not the same life, but meaningful regardless. It took me awhile to accept my fate (which brought some peace after the shock and emotions post diagnosis).

You’ll get the hang of it eventually, be patient and keep the questions coming. We are here for you!

[Donna5658 in reply to PMRCanada]

Thank you for this helpful and supportive reply! There is a lot of trial and error that goes into figuring out the best strategy for PMR, taking into consideration all of our other conditions, including other autoimmune disorders. I would be lost without this group. I have never received an unhelpful reply. I hope I will get to the point where I can do something more like your smaller, graduated prednisone bursts instead of having to go up so dramatically, but I think for this flare the inflammation had had too long a time to build up and needed more significant clearing.

I think the trick for me is paying better attention to the gradual increase in PMR symptoms that often go unrecognized by me until it’s too late. It’s kind of insidious until I suddenly find myself with a full blown flare.

Thanks again for your lovely reply.

[DorsetLady PMRGCAuk volunteer]

So long as total number of days on high dose doesn’t exceed 14 days then you should be able to drop back down in one go. But if you aren’t sure, then one drop to 14mg for a week, then to 8mg - and once there, no reducing for a month.

Would just say- you may not have needed to go to 20mg, had you given the 12mg a bit longer - 5 days is rarely enough in all honesty- but it’s sorted now. Plus don’t let things get out of control in future, you don’t need to jump the gun… but if you have niggles for more than a week [see link] then treat as a flare.

healthunlocked.com/pmrgcauk...

Plus, sounds as if you do need to seriously think about pacing yourself.. we know it’s not easy, but it’s a must.. especially when you have other health issues to manage.

[Donna5658 in reply to DorsetLady]

Thanks for this very helpful reply, DL. Due to MS, Grave’s Disease, an advanced endometrial cancer history and now PMR I have a very circumscribed existence, which I am nevertheless delighted to have. I do most everything either outdoors or fully N95 masked, My doctor has recommended that I have no one in my house unless we are all masked.

When the possibility of a family reunion at the Oregon coast came up, I considered not going, but due to Covid had seen so little of my far flung family that I decided to give it a try. It was so wonderful that I do not regret going, but it did take a big toll.

Going forward we are thinking of doing shorter trips closer to home with just the two of us. I never need to push myself beyond what I know I can do if it’s just us. I’m learning, but slowly about what my PMR boundaries are. I’ve had enough flares now that I should be tuned into the early warning signs but sometimes they are subtle and my brain rationalizes them away.

I also really appreciate hearing that I may have jumped the gun on going up so high when symptoms didn’t begin to subside on the lower 12mg. This seemed like such a debilitating flare that I was worried the plus 5mg strategy wouldn't be sufficient. But a little more patience might have resolved things without my having to go so high.

Thanks again!

[DorsetLady PMRGCAuk volunteer in reply to Donna5658]

It’s all very subjective isn’t it? It’s east for me to say what might have been, but you have to make the decision on the a day..

[SnazzyD]

I’ve never been in that situation but depending on how much you body noticed drops in general, perhaps a stepped reduction will avoid the is it/isn’t it withdrawal/flare conundrum. If your flare was bad, it may have been that you needed to sustain the increase before going for a knee-jerk whack up to 20mg.

It is so tedious having to manage good stress; it shouldn’t be a thing. Sadly, it is.

[PMRpro Ambassador]

Depends a bit on how you usually react to changes in dose I think. As DL says - 5 days on the flare protocol is rarely long enough, especially when diet and too much sugar is involved too! You have to wash that effect out and pred doesn't always help there as it helped send the BS up. So maybe you could already go back to a lower dose after the mini-burst of 20mg.

[Donna5658 in reply to PMRpro]

Thanks for your input PMRpro! At the risk of repeating myself, I don’t know what I’d do without this group. Interesting to think about blood sugar and prednisone and the increased pred not necessarily helping with BS, in fact making it worse. I have been on a Mediterranean style, low saturated fat, low sugar/carb diet for over 40 years, which has served me well with the MS. But I totally fell off the wagon on the trip. It might well be worth dropping back down to a lower dose sooner rather than later.

[PMRpro Ambassador in reply to Donna5658]

Possibly - you can only try.