New here....howdy! | Arthritis Information
Always looking for ways to deal with this nasty stuff. Hopefully I can be of help to someone with my experiences.
I am a male in my early 50's. DX'd with PMR about 3 years ago. In spite of a SED rate that is never over 1 my Rheumy is convinced that's what I have. All the fun pain and stiffness.
After blood tests showed that I have an immune system deficiency I had had to stay off Prednisone or any other med that effects the immune system or risk life threatening infection.
I have been taking some natural pain relief supplements that seem to help as well as NSAIDS so for now I am blessed to work and do family stuff. Jazz guitar which has been my obsession is less doable these days but I do what I can, as long as it's not in the morning. :)
Anyway, Howdy!
Howdy to you too....what blood test did you take that showed the immune deficiency??
[QUOTE=smartie101]
Howdy to you too....what blood test did you take that showed the immune deficiency??
[/QUOTE]
Not sure what it is called but I had a battery of 17 blood tests at University Hospital in Salt Lake City. My Rheumy suspected it as I had a Vit D malabsorbsion issue.
He referred me there and their Immunologist confirmed it.
One of the things they don't understand is why someone with a compromised immune system would suffer from immune response related diseases like PMR and RA.
What pain relief supplements do you take???
[QUOTE=smartie101]
What pain relief supplements do you take???
[/QUOTE]
There are others out there but I have become confident with Enzymatic Therapy...
Fatigued to Fantastic line. Originally for Fibromialgia but I like their multi vit mix as well
as theri anti-pain formula. I think the active ingretients are Willow Bark and Bromelain
among others.
I have no affiliation with the company but it's what I use.
AHH - willow bark. I have been taking a baby aspirin every day or so....seems to help. Wonder what the difference is between the aspirin and the willow bark...I know that aspirin is a chemical copy of white willow bark...but I wonder if one is beneficial over the other. I am at the two year mark and trying to throw off the last bit of this. Good days and bad...My mid back was giving me fits and now it is better but my left hip is making me limp. I may go in for an MRI of my back just to see. I mean - not knowing what is causing the pain - should I rest or move...? Fracture or muscular. I am grateful I can function now but wonder if I will ever be the same as I was. I wanted to skip the pred and just suffered mostly with supplements and nsaids - the pain was unbearable. But here I am now - so much better but both rhumys I see seem to think there is a shoe that will at some point drop.....Lupus or arthritis or what - don't know....he says diagnosis of these things takes a tincture of time. So far...at this time...all my blood work is ok...I am all for striving for health instead of looking for meds......please keep posting about anything that you find that you like.
Smartie, it's a frustrating, wearisome thing isn't it.
I am about 3 years in and based on what my family doc told me PMR runs it's course in 2-5 years. This January I got the news that mine will never go away because it's a result of my immune system shutdown. Pretty depressing.....but you gotta go on.
I've been down the Prednisone road and felt great with it but I'm convinced and so is my family doc that Prednisone caused or at least exacerbated my immune system demise as well as bone loss. At this point I am committed to staying off meds as long as I can.
I would not push this on anyone else but for me, right now, good supplements, gentle exercise and most importantly, adequate sleep are the ticket.
I know how horrible the pain can be. Here's praying the other shoe does not drop for you.
I haven't been here for awhile. I am on my three year mark. I think it is basically gone; but, like Smarty (I remember from when I visited here quite often before) my left hip started to hurt last year and went from bad to worse. I had an xray last spring and an MRI.
Everything looked ok. I could not walk without limping. I went to a chiropractor who is noted in this town for always having you come back. I decided though that something had to be done. He did several of those electrical impluse sessions and the physical therapist did some deep tissue massage. I did have about 15 sessions.
Now I can at least walk. There was a sore spot in my right hip that he finally found. I could not find it, but he put his finger right on it and it felt some someone was stabbing me.
I don't know....maybe lack of exercise for the past two years had my muscles tighten up. My lower back hurts too. Probably this is the aftermath of PMR....or it is still PMR. I'm not as fatigued as I used to be, but I still sweat and I never used to sweat.
I find now that if I take two Tylnol each morning that helps me get going. I wake up in the morning though and my hips hurt so that is why I take the Tylnol.
At least those of you just starting might take note that the horrible pain does go away after awhile. I would say I am 95% better than I was three years ago. Still get tired though. Mary
Wow Jazzrat - I have never heard of a condition like yours - in that the pmr is permanent. Is there another name for this condition? I dont think I have ever read anyone on this forum having this kind of problem. Though I am better I may be permanent at the point that I am at. Confusing. Maybe, hopefully, there will be something to help you at some point. Still waiting for my MRI to be scheduled. Smartie,
For most folks it does seem to resolve after a period of time. The wrench in the works for me is the primary immune deficiency I have. It's called CVID(common variable immune deficiency). It's genetic and not much they can do for you other than have Glamaglobulin therapy which is a monthly or weekly blood infusion of antibodies harvested from blood donors. Typical cost is 00 per month. I have resisted it at this point as my PMR is tolerable moreso than the therapy and the hassle and side effects that come with it, nevermind the cost. My RD and ID tell me that my PMR would improve but I'm not ready to make that jump. Plus neither one of them can tell me how a person that supposedly has no immune system can have auto-immune diseases!
jazzrat
I read somewhere or other that it is 'vascular' , as there is no known cause or cure for either pmr or gca, at present the jury is out.
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