Posted , 22 users are following.
Hi, can anyone share with me what age they were when diagnosed with PMR? I am 52, specialist said I am too young for PMR and diagnosed me with PsA. My eye and jaw ache on a regular basis. Thanks.
0 likes, 49 replies
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Daniel1143 annette25895
Posted
Lots of folks get PMR under the age of 60. When doctors or other specialists tell patients it can't be PMR because they're not 60, it suggests to many that they know only what they've read and have zero experience.
annette25895 Daniel1143
Posted
Do you have it? If so what are the main deciding factors? I see a professor of rheumatology at the moment. I don't know who or what to believe anymore, all meds so far not working except Prednisolone. Currently on Simponi injection for PsA.
dboza annette25895
Posted
Nefret annette25895
Posted
Diagnosed at age 57 but had a very gradual onset which is believed to have started in my early 50's.
PMR doesn't usually begin with jaw/eye pain, however. What other symptoms do you have? There are some very classic signs with PMR.
annette25895 Nefret
Posted
I started with neck/ shoulder pain and lower back pain, the eye and jaw pain came on after about a year. My GP thought it may be PMR but specilaist said I am too young. It took nearly 3 years for a diagnosis of PsA (so they tell me that's what I have) .I wonder what the differences are in the tests as to what decision they make.
linda17563 annette25895
Posted
amkoffee linda17563
Posted
That's funny because mine was confirmef by the rheumatologist on my 55 birthday. My GP told what I had before that and sent me to the rheumatologist,
Happy birthday to us!
danielle62164 annette25895
Posted
mine started I was 67 and I still have to take prednisone
tina-uk_cwall annette25895
Posted
Hello Annette, I cannot say what condition you have, but I was diagnosed with PMR at the age of 52 in december 2013. I had had the symptoms since the september. I still have 'live' PMR and am currently on 3.5 mg prednisolone. All the best, Tina.
annette25895 tina-uk_cwall
Posted
tina-uk_cwall annette25895
Posted
Annette, I simply woke up one morning with the most dreadful pain in my neck that although died down abit simply never went away. Over the 3 undiagnosed months this pain just got worse and further pains developed in my shoulders, upper arms, backs of knees, hips, groin, wrists thumbs and finally rib cage. The final week prior to my rheumy appointment the pain was do severe I couldn't move for pain. To look at me I had no swelling. If I didn't move I had no pain, and if I moved around for long periods the pain deminished but was always bad. I was given numerous pain killers but none of them worked at all. I had a blood test and my esr and crp were both raised. When I had my rheumy appointment he had to help me into his consulting room as I was in so much pain. He diagnosed PMR with the proviso that I take prednisolone 15mgs in the morning and if the pain subsided then his diagnosis was correct. I took the very first dose of 15mgs and within 3 hours I could walk unaided and wax almost back to my normal self. I have suffered 1 flare whilst reducing when I reduced from 9-8 mgs. I immediately went back up to 10mgs and since then have used the dead slow and almost stop method of reduction, and I'm now at 3.5mgs. I have had PMR for 3 years now and am hopeful I will eventually be rid of it, (when it goes into remission, as you actually have the condition forever), but only time will tell. I have blood tests every 3 months to check my esr and crp levels and they are always very good....normal. Currently there is no definitive test for PMR. It's all based on the symptoms and how those symptoms respond to steriods. Some patients don't even gave raised blood markers so in some cases it can be hard to diagnose but if a dr is knowledgable then that's always a plus. All the best, tina.
cindy63197 tina-uk_cwall
Posted
Hi Tina,
Where did you find out that once you have PMR you always have it? I was told by one doctor that I would have it for 2-6 years, and I have considered myself to be done with it after 2 years, with a more than average chance of getting it back. However another doctor said I was in remission. I definitely don't want it revisiting itself on me!
EileenH cindy63197
Posted
If you suffer from an autoimmune disorder then the propensity for it to reappear is always there for the rest of your life. PMR is only the name given to the symptoms of an underlying autoimmune disorder and for 75% of the population who develop it it lasts for between 2 and 6 years before the activity of the immune problem burns out - and you go into remission. There are different ways of achieving remission, the state of having no signs or symptoms of the disease as measured by accepted means - it can be drug-induced, as while we are taking pred, or it can be what I would call "real" - the disease has burnt out, for the moment at least.
But you appear to accept that it hasn't necessarily gone away when you say "with a more than average chance of getting it back." . Some experts are of the opinion that when it burns out in under 2 years then there is a higher risk of a relapse at some later date. I know a few people who have had it twice - and all of them say the second episode was totally different to the first in every sense, presentation and response to and journey with pred.
Other experts are beginning to realise that PMR probably does not come in just one version - and that would probably account for the 3 fairly clear groups: short term sufferers for up to 2 years, medium term sufferers for 4-6 years and longterm sufferers for much longer, even sometime pretty much for life. It would be very helpful if doctors cold get their heads round that - then they might be less insistant on getting patients off pred before they are ready and able.
EileenH annette25895
Posted
The international guidelines say over 50 - and there are cases in younger people too. There is incontrovertably documented GCA in a 37 year old male - if you can have GCA at that age there is no reason why you shouldn't develop PMR. Whoever your specialist is - he needs to get up to date.
I was 51 when the symptoms first developed, at just 57 the rheumy wanted it to be anything except PMR and really wanted it to be PsA, with no history of psoriasis and a textbook set of symptoms for PMR (except blood markers) and response to pred.
I think you need another doctor. Where are you?
dboza annette25895
Posted
I was started on 40 mgs. of prednisone and weaned down to zero. It took about 9 months of weaning. I was lucky and did not get many side effects from the drug. I did not get the voracious appetite or get tired. Actually, the prednisone helped my Raynaud's syndrome and my foot problems. Which was a nice change for a Minnesota winter, first time I wasn't always cold. I have been off prednisone for about a month and a half. Feel pretty good. I was very strict about following my doctor's directions on tapering my med. I did absolutely no self dosing. The bout of the pmr was especially difficult in the beginning, because my husband and I run a busy restaurant and I need to be on the move a lot.