flare

[Kaaswinkel]

from May 2017 I have had PMR (now 72 yr )and I have “ managed” this condition OK. Isch with the help of this forum.

No major flares on the way, if I remember well, but attempts to taper lower never worked.

My “happy place “ was always between 3.00 and 3.5 mg.

3 weeks ago I went for a bike ride after doing not much of that ( winter) for about 2.5 months.

2 hours. Result: Sudden acute pain in both hips, great difficulties getting of my bike. Very similar to what I experienced when I got PMR for the first time. As if my body remembered it from way back!

Too much biking!

I have taken 5 mg prednison daily which is not enough, symptoms are not much better.

So apparently I have not taken enough to “ mob up the inflammation.” Etc.

please advise me about an appropriate dose I should take to possibly make an impact.

By the way the GP is not interested, leaves it to me ( which has been great until now).

Thanks for advise re dose and duration.

Much love for all!

[SheffieldJane]

I would try doubling my dose for about 10 days and take it really easy. You may catch this rumbling flare. Good luck.

[Kaaswinkel in reply to SheffieldJane]

Thanks for quick response,

With “ doubling the dose” do you mean doubling my normal dose to 2 x 3.5 or do you mean 2 x 5: the dose I have taken the last few weeks. Thanks.

[agingfeminist in reply to Kaaswinkel]

I think she means taking10mg. I would try and zap it with a higher dose for a few days and then drop to 5mg for a few days then back to the usual dose of 3.5.

And gently does it! perhaps a 5 or 10 minute bicycle ride...though I would be wary of that...a little extra walking first...slowly slowly...

[Kaaswinkel in reply to agingfeminist]

Feeling better already for being able to share. Thanks all.

[PMRpro Ambassador]

I'm not sure that is PMR plain - to happen so suddenly sounds more like trochanteric bursitis. Though I'm not arguing it is not a gift linked to PMR!

webmd.com/pain-management/t...

Icing and NSAIDs (with food and preferably a PPI), rest and avoiding things that make it worse are the option without medical input. Can you access physiotherapy without the GP? You need to try exercises that stretch the iliotibial band. Although - if it IS bursitis, you may get him showing a bit more interest,

[Kaaswinkel in reply to PMRpro]

Thanks for yr reply.

I “forgot” to mention that the problem initially started with the hip and soon spread all over the body. Typical PMR pain and stiffness. After 7 years I know the difference well.

I also have trochanteric bursitis sort of pain, which I manage reasonably well.

My question really is: which dose you would advise for this PMR flare. Thanks any advise re this flare more than welcome.

[PMRpro Ambassador in reply to Kaaswinkel]

Flare protocol is ADD 5MG to the dose where the flare occurred - so if you usually take 3.5mg, you need to go to at least 8.5mg.

But that is really aimed at someone who has overshot the dose they need while tapering and the inflammation has mounted up enough to cause symptoms. Had you reduced your dose recently? If you hadn't, then maybe the flare protocol won't be enough and you may have to go back further to find a dose that manages an increase in disease activity which can also be a cause of such a flare - and after 7 years, you probably have the sort of PMR that does that.

[Kaaswinkel in reply to PMRpro]

Sounds good, and exactly what I was after. I have taken 10 mg. If I take that for 10 days , does that sound sensible?,

One really never knows with this condition, but I am grateful to be able to shar/ get advise. Keep you posted.

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

What are you intending to do after the 10 days at 10mg?

[Kaaswinkel in reply to DorsetLady]

Excellent question, thank you.

I think that i slowly taper down then and if that does nt work out i , ask the internist, who I saw a few months ago for advise. I saw her Re the pmr, the bones and the ex breast cancer.

I have had small flares in this 7 yrs but as far as i remember never this…lucky….i suppose…

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

Okay - but as PMRpro says you'll need to re-evaluate at the 10 day mark... and be realistic. If it's not working then admit it, don't hope it will get better by itself. sure yu won't as you've been here before...

[Kaaswinkel in reply to DorsetLady]

I appreciate your care and knowlegde.

I have too much living to do!

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

Don't we all - hopefully... 😂🤣

[Kaaswinkel in reply to DorsetLady]

I wrote in an econsult to the internist/ oncologist who answered that she did nt think PMR can be flared up by exercise ( like mine).

She wondered whether it could be due by muscle pain due to the exercise.

She advised me to wait and see and hold off with the increase of the prednison.

Yeah right…..3/52 after the biking still muscle pain?! Yeah…no!

(THAT is why I have stayed away from the “ specialists…!” From the onset of the PMR: may 2017.)

So of course I continue to do my own thing with yr help: stay on 10 mg and diminish slowly and sensibly. Interesting.

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

It’s very disconcerting when so called specialists seem to have little idea of what they are talking about! Fortunately some of us have a better idea, but it is worrying [and sometimes downright dangerous] for new patients who don’t…

As you say, do it your way…😊

[Kaaswinkel in reply to DorsetLady]

Do you good people get a subsidy/ and or how can I donate some money ( from Netherlands). Your assistance is invaluable for many of us.

[PMRpro Ambassador in reply to Kaaswinkel]

Only by joining or donating to the parent Charity, PMRGCAuk - contact Fran_Benson

[Kaaswinkel in reply to PMRpro]

Thanks, I have contacted them.

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel]

PMRpro has advised -thank you

[PMRpro Ambassador in reply to Kaaswinkel]

"3/52 after the biking still muscle pain?! Yeah…no!"

It can happen with DOMS - there are cases where it lasts for months, you get similar cases with ME.CFS. And why we are so adamant about building up slowly.

[PMRpro Ambassador in reply to Kaaswinkel]

It is a start - but if this is a real recurrence of the underlying autoimmune disorder then even that may not be enough and you may have to wake up that GP!! Plus you may need more pred.

Do you still have a rheumy? How good is that internist?

[Kaaswinkel in reply to PMRpro]

Thank you.

I have never been to “a rheumy” the stories on line are not terribly encouraging, I must say. And I felt able to manage it with the help of this forum.

6/12 ago I saw the internist/ oncologist, who was happy to prescribe me IV bone strengthening meds. She seems to know her stuff re PMR and understands.

I just now send her an econsult on line asked if “ my plan” was good, or if she advised another plan.

My idea was to ask her “re rheumy” when I see her end of may.

I personally feel positive, and lucky i never had this before. Never say never!

[PMRpro Ambassador in reply to Kaaswinkel]

She may be really good if she's got the time. She will see it all from a different perspective.

[Kaaswinkel in reply to PMRpro]

That is what i hope and expect.