Can we ever be certain that PMR has gone or do we just have to risk Staring all over again?
Posted , 14 users are following.
Hi all, I had PMR for 5 or so years and was taking prednisolone for all that time, finishing up on one mg for 6 months then none. That was in August. Today I've just got back from the doctors with a prescription, I've got to start all over again. PMR has returned (if it ever went away) with a vengeance. About 3 weeks ago I started aching and put it down to age, but on Christmas Day the aches and pains took on a familiar feeling. There is nothing that feels the same as PMR, it's unique.
My question to the forum is....how do we know if and when we have got over PMR. I was absolutely certain that I was over it but have been proved wrong.
0 likes, 12 replies
Danrower steve_1
Posted
Steve, I feel like I'm the ghost of Christmas past.... But I believe that our inclination to the inflammatory response is forever. I don't think we catch this thing, PMR, we carry the response. For some reason, the inflammatory response seems to express in later years. I've had it twice, one at 53, again at 64. For me, precipitated by physical or mental trauma.
The hope I've realistically been able to maintain is that, for me, it will probably last for 1.5 years, So there is light.
Good luck on your second encounter!
ptolemy steve_1
Posted
How rotten when you thought it was all over. PMR goes into remission but it is always lurking in the body, we all just hope that it does not rear its ugly head again. It does seem that those who get off pred very quickly are more likely to get a re-occurence, but it seems really bad luck in your case. I hope that this time you get off the pred more quickly.
steve_1
Posted
Back again. I should point out that some months ago I queried about upping the Pred. intake to eliminate a PMR from a problem that I was having with my hands. That turned out to be carpel tunnel syndrome..
Pred. did wonders for that at 10mg but after the tests the specialist recommended that I wore splints. To an extent they worked. I'm now looking forward to ditching them for a while as I will be taking the steroids , I hope that I can find a level that eases the symptoms of both problems, or is that asking too much?
EileenH steve_1
Posted
And was the carpal tunnel syndrome actually PMR encroaching?
steve_1 EileenH
Posted
That I don't know. The doctor told me that PMR doesn't affect the fingers. He said it was unlikely that it would affect the nerves that were affected , but couldn't say for certain.
Harrie4 steve_1
Posted
Hey Steve,
I was dxed with PMR 3 years ago and, like Dan, the initial onset was stress related; as was my relapse a year ago. I see it as a relapsing/remitting autoimmune disorder that will be part of my life more or less permanently.
My understanding is that Carpal Tunnel Syndrome shows up in approx 15% of folks with PMR. I have it and had the release surgery on my right wrist last May. I then developed CTS in my left wrist and will have surgery on that soon. The surgery is not a big deal and highly effective if you follow the post protocol and do the exercises. I got about 90% function back on my dominant hand. However, I've been told that it recurs even with the surgery and that doesn't surprise me. I'm a painter and it hasn't impacted my process. It's not fun but I just push through or work around. You learn patience with this thing.
I'm on my second go-round. I'm at 6 mg and taking my sweet time tapering. In 2019 I plan to integrate the "Eat to Beat Disease" approach into my diet. William Li has a TED talk that explains the rationale, if yr interested.
Gotta go.. wishing you the best this go-round. Just dont beat yrself up. Slow and steady....
EileenH steve_1
Posted
Whenever I hear a report of a doctor saying "PMR doesn't affect x, y, z ..." I have to confess to hoping very very hard that one day THEY develop it and discover what it is really like!
RS3PE syndrome and carpal tunnel are both more common in patients with PMR. Both affect hands and forearms. And there are numerous references to both in the medical literature. And tenosynovitis affects the synovial membrane and tendons in the fingers - I'd say that was hands, wouldn't you? And inflammation is the primary cause of both median nerve and ulnar nerve compression
"Carpal tunnel syndrome (CTS) is a medical condition due to compression of the median nerve as it travels through the wrist at the carpal tunnel. The main symptoms are pain, numbness and tingling in the thumb, index finger, middle finger and the thumb side of the ring fingers." - seems to cover most fingers and the ulnar nerve is involved at shoulder or elbow level.
EileenH steve_1
Posted
You don't really - although it may go into remission, the potential for it to return is always there. Some people get 6 months (or less), some of us never get off pred ( I haven't) and others get off pred and it lasts for years. Every return is different - it may be the same as first time round or it may be totally different.
steve_1 EileenH
Posted
It's not as bad as the first time, at least I can take my spectacles off this time. 5 years ago I was not able to carry out some of the more personal tasks, but we won't go there now.
EileenH steve_1
Posted
Ah yes - like the short-arm syndrome????? 😉
BettyE steve_1
Posted
Short answer to your question is that we don't,....at least, not in my experience.
I've had two bouts, three years and five years with five good years in between and I still regard every twinge with great suspicion even though it's five years since getting to the end of second.
Many can identify the stress/trauma precipitated their PMR but I cannot. It came out of the blue into a very comfortable and worry-free life both times and yet, three years ago when I did have a very stressful nine months, nothing happened. It's no wonder so many doctors, let alone patients, are at a loss for a definite diagnosis.
Did your GP do any tests this time round? If so, were your ESR and/or CRP raised?
Do hope you are soon pain free. One of the few good sides to taking Pred. for PMR is that it relieves many other aches and pains.
steve_1
Posted
No, he didn't do the tests, symptoms alone were enough this time. PMR has a very distinct pain, unlike any other I've experienced and this has it down to a tee. 15mg of Pred and I'm halfway back to normal(?) already.