Here I have this common, painful, debilitating, treatable disease and I can't find rheumies in Michigan interested in it. I looked up the rheumatology faculty research and interests at the Univ. of Mich. and all I found was lupus, RA and scleroderma. I did find some rheumies that were more promising at the Mayo Clinic in Minnesota, although GCA was more interesting to them than PMR. Still, that was a closer interest. I wish I could fly to Scotland or Bristol!!..but my medical insurance wouldn't pay for the consult even if I paid for the flight. Probably couldn't get the prescription filled here anyway. So I am thinking I should call the Mayo Clinic. Any other ideas?
I live close to Portland/Oregon, and I cannot find a doctor who specializes in PMR. It is always the rheumies who usually doubt the diagnosis and want to treat it with MTX. They are not as advanced here as they are In the UK and Scotland.
I have a GP who is open to the treatment of this forum because I have shown her some of the printed material. PMR needs a very careful treatment and reduction program, and they are not well trained in this field.
The Mayo Clinic has a very good reputation. It would be worthwhile calling them for information about their PMR program, and if they have one.
Dan here, in East Central Florida. After misdiagnosis from VA rheumatologist, and 8 weeks with no relief, self diagnosed from internet searching, and told my VA primary care that I was going to plop myself down in the clinic if he did not start me on low dose prednisone.VA rheumatologist denied inflamation due to boarderline sed rate and creactive protien.Went to Mayo in Jacksonville FL, after I had been on 15 mg pred for 3 weeks, greatly improved, and the chair of rheumatology dept said since I had hand and foot involvement, he thought might be late onset RA. WRONG! The knowledge of PMR by stateside docs is abysmal, I have had to serve as my own best physician. Crap! Down to 5 mg, after 1 year with a few setbacks. Have found the best information and support HERE, and did not use this site until 1 year into the condition. I discounted it when searching, probably biased thinking we here in the US had superior health care systems. Wrong. Could be the system in UK encourages patient involvement, where here, in the US, the AMA supports the idea of the ignorant patient. I think, for profit. There are some very wise, caring and knowledgeable people here. And they speak english, and compassion. And that is a language.
Sorry for the angry tone of my immediatly preceeding post. I share the frustration of low level of PMR awareness here in US. Additionally, when I saw an ortho about a torn calf muscle, and mentioned I had PMR, he asked with a quizzical look " when you say PMR, what are you referring to?" When I said Polymyalgia Rheumatica, he did not acknowledge that he knew what it was. I think he thought to himself " hypochondria myalgia." Fortunately my calf tear and hematoma was greatly improved by the time I saw him, needing no treatment.
Hi noninoni, I have actually read the Mayo clinics webpage on PMR and I agree with erika, in that it may be worth contacting them especially if your insurance covers it. I am so lucky in that I have a very good GP and rheumatologist who both look after me very well. I live in England. I do get very upset when I read stories of patients suffering when all it takes is a little pill and diligence from a clinician, which after all is why they chose to be Drs in the first place. All the best, christina
My Rheumatologist in Richmond, VA trained at Wayne State U in Detroit, MI. He had many patients with GCA and PMR as a resident. Info from Mayo is good as is NIH and John's Hopkins. We in US so appreciate this forum since we have nothing! It is a bit nuts for us as patients to have to inform our specialists about our illness. Hope you soon find good help and feel better, Ann11295
I am in Northern Virginia. My Rheumy did her Fellowhip at Yale University. PMR is one of her areas of expertise. She lists the conditions she treats on her website and also provides links to Arthritis Foundation and NIH as places to find out about the condition. They might direct you to a rheumy in Michigan.
Hi Dan,
Wow, you have done really well reducing to 5mg in a year. I hope you are successful in continuing that trend. My last attempt at decreasing from 4mg to 3 1/2mg went sideways and I'm back to 10 / 9mg alternating and hope to go to 9 in a couple of weeks so please go slowly, slowly at such low doses. Have you had adrenal testing done? Just curious because I'm considering doing it once I get to 7mg just to see if my adrenals are actually kicking in.
Where in Florida are you? I'm visiting my sister in Indian Harbour Beach but heading home to B.C. Saturday.
hi Mrs Mac,
No haven't had the adrenal testing done. Never been suggested. Just coming from the va to the medicare system. so my taper has been self-defined.I live very close to indian harbour beach on South Tropical Trail, Merritt Island, south of Pineda Causway.What is the adrenal test?
also, mrs. Mac, do you think that you had a flare because you tapered too quickly, or was there an external stimulus, a change, trauma, stress or injury?
so very many variables in these equations.
Coincidence!!! I live in East Central Florida too! My
primary doc that has a family practice diagnosed my
PMR but sent me to a Rheumy for a second opinion and he
concurred that it is PMR Primary put me on pred and
has been monitoring me for year and a half. Soooo some
docs are aware and do the right thing.....just have to find
one. Mayo clinic is a good idea......look at their web site
and see what they have to say about PMR.
noninoni, I'm aware of a rheumatology professor at the University of Pennsylvania who is an internationally recognized expert in diseases under the vasculitis umbrella, of which GCA is definitely one and PMR is also believed to come under vasculitis. There are also various research trials on Polymyalgia in the US, either underway or completed. Have a look at niams nih gov Health Info Polymyalgia. Won't post the proper link as it will disappear for moderating.
Wow, you really are close by! We probably drove by your home earlier in the week when getting a bit of a tour. My husband and I usually visit one or two times a year on our way back and forth to Mexico. It would be great if you're free and clear of PMR by the time we're here again. If not maybe we could get together and compare notes😊.
When I had my flare I was in my third week of the DSAS method of Eileen's going from 4 to 3 1/2. I had been in Mexico for 7 weeks during which time I had arthoscopic surgery on my ankle. No problem at all with my PMR. I returned home a month after surgery (dec 15th). Still no problem. We travelled by car to my daughters about 6 hrs away from us to spend Christmas with them and returned home Dec 30th albeit with a cold. No problems... I thought, this is great, I've done all these things and no problem with my PMR so on the second week of January I started my decrease. 1/2 mg first week, 1 mg second week and 1 1/2 third week and wham. I left it a few days in case it was just pred withdrawal, even though it didn't feel like it, but soon realized I was having a flare so bumped the pred to 4 then 5 and finally had to go to 10mg. Boy was I unhappy!! Now I'm scared to death to decrease but have made it to 9 / 10 alternating and will stay there until we're home and settled for a couple of weeks then hopefully be able to continue a very, very slow reduction. I was dx'd March 2013 by the way and that was my 3rd flare. One my GP had me reduce too fast and the second was my own impatience. I am 65. Probably more than you need to know😕, sorry about that.
I'm not medically trained but my understanding is that our bodies convert cortisol to "prednisolone" or something like it in the amount of 8mg a day. When we are on pred over that amount go "OK, we don't have to do this anymore" so when we get to doses of about 7mg they need to start producing again. If they don't I believe we need to stay on low doses of pred until they do. In some cases if the don't produce enough you may have to stay on pred indefinitely but not absolutely sure on that. The adrenal testing checks the function of the adrenal glands to see how they're doing.
Best of luck on your PMR journey,
hugs, Diana🌸
Crazy coincidences!! You and Dan should start a group😉.
I'd actually love to start one in my area but don't know anyone with PMR except a friend who has been in remission for about 5 years and it ran in his family. It would be nice to have someone near by that REALLY understands what we are going through and how we feel.
Have a happy day
Hugs, Diana🌸
The rheumy I saw pretty much diagnosed me with "highly suspect this is PMR" after examining me on my first visit.
At my insistence, she waited to put me on Pred till she ran blood work and even then, not until I was absolutely certain nothing else would help. She's been terrific to work with and is in Vancouver, Washington (WA the state and just over the bridge from Portland OR
Hi MaggiGrace,
I hope Erika reads this post because she is in Vancouver WA as well and I bet would love to contact you. I'm from Pitt Meadows just outside of Vancouver, BC and we've talked about getting together.
What a great place this is to find fellow PMRer's all over the world. Just love it.
Hugs, Diana🌸
Maggi, do you live in Vancouver, WA?
Diana, yes I just read it! I would be good to have contact with Maggi.
We could meet for coffee (?) I'm out of town until after Memorial Day.
Do do you have a favorite coffee shop either downtown or around the mall area?