Recurrance of PMR
Posted , 6 users are following.
I was diagnosed by my doctor 2 years ago as having PMR although it did not show as definate in my bloods. Looking back I had symptoms for several months before a mild fever after which I was absolutelty wiped out.
I took low level steroids for eight months starting at about 8 mg. I felt relatively lucky becuase I had not had it as bad as others. However I am really disapointed as it seems to have returned again after a year symptom free again it is not showing in my bloods but I am being put back on steroids. Is this a common occurance to have a replapse ( and for it not to show in the bloods) and does anyone know if I might have been doing anything to cause it to come back back?
I am self employed in quite physical work and it had a great impact last time. However there is a feeling that this is the devil I know but would really appreciate knowing others experience as I thought it was behind me and that is not the case and I am not being referred to a specialist to ask questions?
many thanks.
0 likes, 7 replies
Nefret john0707
Posted
It is very common for a relapse to occur following a mild episode of PMR. Most of those who have this do say that the second bout is nothing like the first, both in the severity of the symptoms and the duration.
Most patients with PMR do get referred to a Rheumatologist - particularly those whose symptoms are not completely textbook - because many conditions can mimic PMR and vice versa. If you think your GP is up to managing a different version of PMR then don't worry about a referral.
Hope the second lot disappears soon!
Chopsie Nefret
Posted
All the best
EileenH Chopsie
Posted
As for using aspirin or ibuprofen: one friend was ordered by her GP to use ibuprofen and 3 days later was in A&E with a gastric bleed. Not trying that way!
john0707 Nefret
Posted
EileenH john0707
Posted
It may be the same, it may be different - I hope it is as mild as the first lot and you manage with a low dose of pred again. At least this time you have some experience and know what not to do!
Do keep in touch and let us know how you get on.
Chopsie EileenH
Posted
Pmr and the hundreds of other inflammatory diseases we may be susceptible to have roots in genetics and environmental factors. Everyone finds different ways to manage symptoms so all the best to everyone
I will not post again as my experience seems to be out of place on this forum
EileenH Chopsie
Posted
There may be examples in the literature of successful use of NSAIDs but I haven't read that many - and I have read a lot. Neither has there been any successful identification of environmental factors which trigger the final development of many autoimmune disorders. That there is a genetic susceptibilty is inarguable - but there is no way of changing our genetic heritage. You can hardly say to a patient in a wheelchair and so crippled by pain they cannot leave the house that "It would have been so much better if you were not descended from a Scandinavian genepool" or "what a shame you didn't live the other side of the country from that chemical plant when you were younger" - not that there is any evidence of any particular chemical influence or infection in PMR.
And when the PMR progresses to GCA - as will happen for about 1 in 5 patients - then there is no choice. You use pred or risk them going blind. I have something between - as do many it is being realised. When I put up with the relatively "mild" PMR symptoms for that first few years did that allow continuing damage to my heart and blood vessels? The long term inflammation has almost certainly put me at increased risk of developing cancer at some later point.
I wasn't in any way suggesting your experience was "out of place" - it certainly isn't in terms of a means for some people to help manage their symptoms. I was answering the question you asked. It has been tried - didn't work for us.
When people post on this forum advocating non-medicated alternatives their posts are usually transferred to the "Alternative Medicine" section (not by me I hasten to add). Anyone posting on here saying "this worked for me" is welcomed - but you will find we are inclined to question most things. Including the incorrect use of steroids.