PMR in the USA: just thought you'd like to know how many we are...

Posted , 17 users are following.

Amy Oshier Health Reporter for NBC 2

"It sounds like nothing most people have ever heard of: polymyalgia rheumatica. But more than 700-thousand Americans learned about it the hard way."

I don't know where she got the number, but she quotes Lee Memorial Health System rheumatologist Juan Bustillo. 

If the number is corrrect, then we are a large group here in the US!

 

3 likes, 39 replies

39 Replies

Next
  • Posted

    Hello Paula, yes I believe there's loads of us. I think I read somewhere that 1 in every 1000-1200 Brits are effected.

    regards, christina 

  • Posted

    That is a large number indeed.  

    I was curious about the entire article and googled it.  I don't know if this will work, but here's the link

    http://www.nbc-2.com/story/29481963/health-matters-polymyalgia-rheumatica-fast-furious-treatable#.VaEMa_lVhBc

     

    • Posted

      It is interesting he says that although people think they have pain in their muscles it is the joints that are affected. I am not sure that is one hundred per cent correct.
    • Posted

      Hello Jean, yes the link works and I read the article, but I enjoyed myself more watching the "puppy fails" thanks, christina 
    • Posted

      I don't believe it is correct.  I have no joint issues at all related to PMR.  It's all about my muscles.  The one joint issue I have on and off is knee  osteoarthritis.
    • Posted

      I wonder if he is muddling it up with rheumatoid arthritis? PMR I thought was caused by inflammation in blood vessels which caused the muscle pain. He is supposed to be a rheumatologist who professes to know about PMR. No wonder doctors who rarely come across it have such funny ideas about PMR! 
    • Posted

      Jean you are correct I think....most of my pain is in my buttocks and I am quite sure there are no joints in my btm!
    • Posted

      Hi, I agree with you about the joints. In 2008 when I had my first episode I had tendonitis of shoulder, thumb, elbow, and then both hips which they thought was bursitis. Xrays just showed OA but the symptoms only in the hips and thighs this time felt like l had small particles of glass in the joint. After 9months on pred I had avascular necrosis of both hips. Had both hips replaced and finally tapered off prednisone by 2013.This flare started in Jan. 2015 and affects all the usual muscles back,thighs,upper arms and neck And buttocks.. I see rheumy tomorrow and hope he goes up on prednisone. On 10 mg a day and lst night was miserable-pain in back Rt. Side from where ribs start and up sore to touch between each rib where I can reach. Has anyone ever had something similar.I haven't lifted anything heavy. Not happy with nurse practitioner hope the doctor remembers me. Pat ( avascular necrosis is not unusual with someone on high dose steroids--which I was because of high sed rate in 60's.)
    • Posted

      Hi Pat, I have really bad pain round my ribs and back. The other day it was so bad icould hardly catch my breath. I couldn't bend forward or turn from the waist. I looked up rib pain and it only brought up costocondrosis which causes pain in the sternum. My pain isn't there it is more on my sides and back. I also have a lot of pain in my thighs and buttocks. My gp increased my pred from 15mg to 20mg about 9 days ago but I haven't had any improvement in my pain so far.
    • Posted

      It does sound as if it could be myofascial pain syndrome - a pair of trigger points are on either side of the spine about rib height and they can pinch nerves causing referred pain into the rib area. Lower down the referred pain is into the buttocks and thighs from trigger points about where a baby's dimples are. It often appears alongside PMR but since the problem is concentrated on specific areas it takes some time of higher pred doses to iron it out - sometimesit takes months if it works at all. Local cortisone injections work much better and manual mobilisation of the trigger points also works

      Use your search engine to find more details - and ask a physiotherapist for advice. Bowen therapy can also work well.

    • Posted

      I too have tender spot on my lower thoracic spine, got after PMR.  Assumed it was from me leaning forward to lift art easel out of car... Wondered about cortisone shot there, but fear being near spine... Have you heard of anyone having that done? 
    • Posted

      I have two herniated disc just between my shoulder blades.

      I've had four cortisone shots into that area.   We have

      Pain Management docs here in the states and I think they also

      do epidurals for child birth and other deadening for spinal

      problems,  Not sure I would do that for just "tender spot"

      They take x-rays while they are giving shots to show where

      to put them.  I did get some relief from pinched nerve pain

      which is pretty bad....... 

    • Posted

      The cortisone shots are into soft tissue, muscle - not into the spine. I've had cortisone shots of that sort and they worked quite well - but bowen worked too and there are no side effects to that! Other than to the pocket - but if it hasn't helped in 3 sessions it probably won't so it isn't worth continuing.
  • Posted

    NBC reporter is right....most people have never heard of it including

    me until I was diagnosed.   I just asked my doc at an appt last

    week if he has any other patients with PMR besides me......he thought

    for a minute and said one man that could be off pred but insists

    on taking lmg per day just in case.   Finding this blog and learning

    how other patients handle the disease has been a real plus

    for me.  I was always wanted to talk to someone that had it but

    didn't know how to go about finding that person.  Interesting

    to get those numbers!!!

  • Posted

    Then why oh why haven't you a forum to help you all on the spot???

    Surely someone can start one?  You all need to know where to get advice/ help quickly, and where the specialists for PMR are.

    We can listen over here, but we don't know too much about the American health services.

    Good luck with your research.

    Constance

    • Posted

      I'm pushing 80 and haven't a clue how to start anything.

      I'm not terribly computer smart, just enough to get by.

      There may be some forums in the U.S. but I haven't

      found them.....I'm happy with my GP, been going to

      him for l7 years and he initially sent me to Rheumy

      to get second opinion but I would rather be under

      his care.  I think I must be very lucky or blessed, I

      have never had the severe pain so many others talk

      about.    I complained about some pain in groin,

      thighs, and butt and my doc noticed I had a hard

      time getting up out of chair and that rang a bell with him

      Tested me right then for sed rate which was 92.   I do

      find it helpful to hear other's experiences with this

      disease.

    • Posted

      I suppose because this one is so very good!! I found it by looking on the internet.

      A short explanation of our healthcare system:

      Retirees purchase Medicare as their primary insurance for both hospital and other medical services and can buy a supplemental plan from a private insurance company, in addition that would cover some of the cost that Medicare does not (such as some of the medication) 

      If you are over 65 and still working, Medicare covers only hospitalization. You either purchase the additional insurance at a discount through your job, or you buy it separately if you have not job. You can also have the coverage through a spouse, who has a job.

      If you are under 65, you purchase insurance through your job or you can be on a spouses policy. If you have no job, you can buy it. The options are available online (Thank you Affordable Care Act).

      Medicaid is available for persons below a certain income level.

      Not all doctors (GPs and Specialists)  accept Medicare, as the government does not pay as well as insurance companies. Also, doctors and specialists can choose which insurance companies they wish to work with.

      So it is up to us, as patients, to read our Medicare manuals, go online, talk to people, look at our insurance company's list of doctors and specialists to find out who we can see and who we may not. We also call the doctors' offices to find out whether they take Medicare. If it is a rheumatologist it is also a good idea to call to find out what autoimmune disorders they treat.

       

    • Posted

      Hi Faye.  You do seem to be very lucky with your doctor.  I also found my doctor more helpful at first, but my rheumatologist has bucked up and now also looks after me very well.  I suppose the rheumy sees so many people who are crippled hobbling into his surgery that he doesn't believe a 'young' 76 year old who walks completely upright is particularly ill.  The bloods tell him differently, so now he takes me seriously.😀

      You also seem lucky with your pain level.  Good for you!

       

    • Posted

      Wow!  In England, and also here in Germany, the health systems are very good.  A great many people don't have/need private insurance policies.

      We used to have private insurance, but when we retired we decided that we could save our money and just joined the public health system.  We are VERY satisfied with it.

      Thanks for the info!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.