The Continuing Cycle
Posted , 17 users are following.
Hello all,
I am a realist, and while i want to think PMR is a singular event, I believe when experienced, it is a lifetime resident, hopefully quiet and not too obnoxious. To wit:
I'm a 68 y.o. male in Florida, USA. I've had 2 significant bouts with PMR/ RS3PE, one un-diagnosed at 53, one misdiagnosed then correctly diagnosed at 64. I've written poems here about club zero and another.
I'm writing this to say that I've grown sensitive to the initial symptoms which imperceptibly pre announce the arrival of PMR misery. For me, it is bilateral Hip pain and /or bilateral osteo inflammation. I have suspected that very low dose prednisone (>4 mg/ day) can cause suppression of the "spiraling up" of the full blown PMR symptoms.
Specific example: about a week ago, I had familiar bi-lateral hip pain. Waited a few days, for self confirmation, it was increasing, and then started 4 mg pred/ day. Full remission in 2 days. I will begin a slow taper after a week, and hopefully, I suppressed a flare. There is some literature which supports this approach. I has worked a few times for me.
I've had this unhappy traveling companion, PMR/RS3PE, for 15 years, and probably will be with me until I depart. I just want to be able to keep him quiet, and maybe this method will help a few of you. By the way, I can't rely blood tests to confirm, since I'm largely seronegative for PMR.
Good luck to you all, fellow travelers, Thank you for your contributions . This forum is the single most informative and helpful travel guide I've found for my journey.
Dan
6 likes, 24 replies
Harrie4 Danrower
Posted
Thank you.
Keep paddling!
Danrower Harrie4
Posted
EileenH Danrower
Posted
Snap - my herald is low back muscle spasm and sore thumbs/wrists. Not that I've got to 4mg but hey-ho!!!!
constance.de EileenH
Posted
Are sore thumbs and wrists sometimes caused by PMR? I always put mine down to OA. I’ve been “at it” for 6 1/2 years and still don’t get it.😡
kathy61958 constance.de
Posted
celia14153 EileenH
Posted
You've had to live with this for so long Eileen, and this is what makes your knowledge sharing so amazing and so helpful - but it's at your expense. Bummer. I wish it wasn't.
Danrower constance.de
Posted
EileenH constance.de
Posted
Mine aren't OA. Nor is the knee a rheumy insisted was OA 14 years ago - proven by x-ray a few months ago.
peggy_56092 constance.de
Posted
Harrie4 Danrower
Posted
Thank you, Eileen!
Miki680 Danrower
Posted
Hi Dan- thanks for writing this and I wish you well. I especially appreciate your reference to the many forms PMR can take, and the many pains we go through with it. Much more research is needed to more fully understand these pains. Since my own trajectory is similar to yours let's both continue making good friends with our traveling companions. It certainly makes the journey more tolerable.Have a great day.
Danrower Miki680
Posted
kathy61958 Danrower
Posted
Hi, Dan
You method seems to carry validity in staving off a full blown flare. I haven’t been able to taper below 12.5mg’s of prednisone before a full flare incapacitates me. I’m eighteen months into my diagnosis and don’t see any end in sight. I have been told repeatedly that PMR runs its course in 5-7 years. I’m hearing more and more from sufferers who have long surpassed that timeline.
I hope you’re able to keep the horrible pain at bay with less & less prednisone.
Best of luck to you,
Kathy
EileenH kathy61958
Posted
But nevertheless, life is good.
celia14153 Danrower
Posted
You're lovely. Thanks - so helpful. I think people have to experience this kind of pain to understand where we come from. Pred is enabling and I'm grateful for it because it holds the pain at bay - thanks for your tip. Soldier on!
Danrower celia14153
Posted
Thank you Celia, Pain's a monster, but after 2 bouts, and full remission each time, FEAR of the pain and debilitation carries significant weight in my consciousness. That's why I wrote today, and I am hypervigilant in order to preclude any relapse. I THINK I have been successful 3 times in this remission period, marked by zero pred over the last 3 years, except for 2 very low dose interventions of about 3-4 weeks of 3 or 4 mg. pred. Not much written on here on how to preclude this condition, and since I've been down that gravel road twice, I am desperate to avoid it. The only tools I have is to avoid physical and mental stress, and put the fire out before it gets too big with very low dose pred.
barbara69815 Danrower
Posted
Danrower barbara69815
Posted
Hi Barbara,
I've written on this forum that I never understood addictions. But after my experience with the reduction in inflammation from Prednisone, I said I would do whatever it took to obtain that relief. Buy it on the corner, if necessary.
To answer your question, I have found, after difficult search, a competent rheumatologist, who I share scholarly articles about PMR and RS3PE. I will include a link or reference to that here:
"Remitting seronegative symmetrical synovitis with pitting oedema (RS3PE) as recurrence of aborted PMR"
If you google the above, it will display this scholarly article. It's free, old (early 2000's), but for me, valid. I have given no less than 6 articles to my rheumatologists, when they were unable to reach past their education and experiences with PMR.
Many here will recount experiences of misdiagnosis, denial and mistake. Interestingly, that may be the result of PMR not being an emergency and immediately fatal medical condition. Me thinks there is gross inaccuracy in the knowledge of PMR because of it's non-urgency.
So, I have persuaded my rheumatologist to perscribe based on my condition, and she believes me. I have a stash of 1 and 5 mg tabs, and keep this well informed MD of pertinent changes to my inflammation.
So you know how important this is to me, I will include a poem about zero pred and remission, and my relations in an immediately following post.that I wrote and posted in this forum a few years ago.
Danrower barbara69815
Posted
This was posted in a discussion about "Club Zero": a discussion of those who reached Zero Prednisone
Club Swagger Club Zero Club Fear
I want to take a victory lap.
I want to say good riddance.
I want the objects in the rear view mirror to be
smaller than they really are.
I want the 50 pounds gained and lost in the last
years to be gone forever.
I want to dump my bottles of prednisone.
But this systemic demon has bitten twice!
Damn him for his residence.
I asked my rheumy a year ago:
Will I ever get my swagger back?
The clouds then lifted .
slowly, weight down, pred down,
walk, road bike, love
again.
Things I thought I might never have.
Here am I, back, but I keep the little white pills.
Just in case.
TheRaven barbara69815
Posted
Barbara,
Somewhat similar to Danrower I had to go through 3 rheumys before my GP (actually a physicians assistant) agreed to write pred prescriptions for me whenever I need them. The tipping point was when, during a consultation, she said that I had educated myself better about PMR, was more current on research info and understood Pred reduction better than she did. This was when I'd asked her for a consultation and explained that I'd dumped rheumy #3 and why.
Like Danrower, I think the trick is finding a doctor who realizes that you really do have a good understanding of PMR and Prednisone and can handle the dose adjustments, reductions and occasional increases. However, it requires persistence to find a doctor that will let you direct most of your own treatment and prescriptions. It can require a lot of diplomacy too.
Danrower TheRaven
Posted
Anhaga TheRaven
Posted
I was remembering the study which shows patients given control of their own painkillers when post-op in hospital will actually take LESS morphine than would be prescribed, We do know our own bodies best and we won't take more pain relieving medication than we need, given a chance to find the right level.