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Posted 8/16/2015 4:30 AM (GMT 0)
Over the last few days I have been researching PMR, most 'medical' sites say it is curable and can take anywhere from a few months to five years, average being 2 years.
The research I have done on non-medical sites, ie, people who actually have the disease, is that it is not curable. Most have to stop taking steroidal meds and then the symptoms simply return.
Absolutely gutted by this new info, does anyone here with PMR have a different story?
Posted 8/16/2015 4:27 PM (GMT 0)
We have had in the past a couple of people inquire about PMR but they never stayed here at Healing Well. When were you dx'd with this? I just read your nitial posting here at the forum & did not see this dx being mentioned.

Like you, I have read about it on medical websites & read the same. I am not sure how much faith I would have in reading from a non-medical website.

If this is something you think you may possibly have discuss it with your dr. I can only tell you that Dr. Google is rarely right. Don't wear yourself out getting on the internet reading about various conditions thinking maybe this is what is wrong with me. You lose too much precious time & energy going down that road.

Take care.
Posted 8/16/2015 11:38 PM (GMT 0)
Not a matter of self diagnosis, it's a matter of what my Doc tells me as a result of the tests he sent me off for. So, I don't 'think' I have it, I know I have it. The proof is in the pudding, the sufferers are the pudding! Fortunately my Doc is pretty good, tells it like it is (as long as you ask him) and gives a very good run down.
Posted 8/17/2015 12:52 AM (GMT 0)
Sorry to read this, how does your dr intend on treating it? Hopefully with treatment you will be one of the fortunate ones that do not have for a long time. How your dr said how long he/she thinks you have had it? Its a strange & different condition the way it can suddenly come & go away.

Take care.
Posted 8/17/2015 6:59 AM (GMT 0)
ESR was relatively low at 47, normal is around 20 I believe and I was also slightly amaemic so not real bad as far as the numbers go. From what I have read some have numbers over 100, perhaps having low numbers may help in getting back to normality before the steroids do too much harm. Whilst the ESR numbers were low the pain and stiffness weren't, couldn't dress myself, shave, tub, brush my teeth and had trouble getting myself out of bed in the mornings. Fortunately I can do those simple things now, albeit with a little difficulty.
Whilst there is no known cause for PMR, I had an elbow arthroscopy a few months ago followed by a rather bad infection a month or so later, the problems in shoulder, elbow and wrist started from that point. Just so sick of not being able to do anything, can't even take the lid off the coffee jar!
Posted 8/17/2015 8:11 PM (GMT 0)
Did I imagine this or did you say after the surgery on your elbow you developed a bad infection? I could be confusing you with someone else here at the forum.
Posted 8/17/2015 11:55 PM (GMT 0)
Yes that was me. A month or two after the op I developed an infection and my elbow swelled up like a balloon, that is when the problems with forearm pain started. I assumed it was after effects of the arthroscopy as did the physio but it gradually got worse affecting my wrist, forearm, elbow, shoulder and neck, that is why I had the tests. So while the experts don't know the causes of PMR I have a pretty good idea!
Posted 8/19/2015 10:08 PM (GMT 0)
Tonyho, the reason I was asking about the infection is I believe there is a connection with these serious infections & unexplained pain that drs cannot give a cause or reason for the pain.The pain is different from their usual pain. I think the infection triggers some type of immune system thing that gets totally out of sync. Of course no dr has ever said this to me, this is just something I believe. This happened to me in 2002 after a serious infection. I have seen countless people come through this forum that say they have all of this pain whether its their neck or back or maybe even both & the drs cannot figure the source of the pain & they will mention having a bad infection previously of some sort. I could be way off base but for some reason I don't think so.

Take care.
Posted 8/19/2015 11:42 PM (GMT 0)
I think you are right on the money Straydog, I've suspected this from the get go. The pain in wrist, forearm shoulder and neck started from the point I picked up the infection and of course I already had elbow pain due to the arthroscopy. When you look at what is right in the middle, the elbow, it's a no brainer for me.
Unfortunately being a diabetic my kidney function is already dowm so I'm not expecting to be on Predisilone long enough for it to have an effect on the PMR.
I've just gone onto a LC diet to help with BGLs (through the roof on steroids); unfortunately, the LC diet contains most of the foods that aren't considered good for AO, which I'm riddled with.
Stuck between a rock and a hard place now!
Posted 8/20/2015 5:54 PM (GMT 0)
I was initially diagnosed with PMR, ESR 100 and negative RA Factor. since there isn't a test for PMR or Fibro they are diagnosed by eliminating other diseases. I had a great response to prednisone, it brought down sed rate immediately , and that is another indication to suggest PMR . However, my pain was throughout my body and I couldn't get below 20 mg of prednisone without big pain. Still seronegative for RA. Finally after 9 -months a different rheumy ordered DNA test, came back with RA. Didn't positive RA Factor for 6 more months. By then, I had been on methotrexate for 6 months. Thank goodness I changed to a Rheumy who was determined to find out what it was. Are you seeing a rheumatologist for your PMR? Ps I too believe that it was triggered by surgery,had arthoscopy of knee. Trauma & stress can trigger RA, also smoking.just sayin. Hope you feel better soon!
Posted 8/21/2015 12:28 AM (GMT 0)
No not seen a Rheumatologist, GP has me on Prednisilone, if it doesn't work then it's off to the Rheumatologist. My ESR level was only 47 and PMR not widespread - limited to wrist, forearm, elbow and neck - but pain was excruciating. The Prednisilone worked within a couple of hours but it tends to wear off by the next morning. I've also noticed any use of my hands makes the pain worse the next morning, same for exercising them. Apparently the Prednisilone works as long as you don't use the affected areas, difficult when it's your arms. Absolutely no strength in arms and hands at all, after only a few weeks I've noticed my arms have visibly withered.
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