PMR for 2 years and now brand new symptoms
Posted , 13 users are following.
I was diagnosed with PMR Dec 2017 (I was 52 at the time) and was prescribed pred 15 mg. I was able to reduce to 1 mg over the course of two years. Now I have a slew of new symptoms: exceptionally stiff fingers where it hurts to make a fist and the pain in my feet makes it hard to walk or curl my toes. my elbows hurt and my knees feel like there is a ton of weight on then...I only weigh 129 lbs! of course the whole malaise and fatigue....
when I was diagnosed with PMR I had stiff painful hips shoulders, back and neck - these new symptoms are not the same. What is happening?! I am so discouraged..
please help-has anyone gone through this?
thanks,
Cynthia
0 likes, 10 replies
dmart7 Cyn1965
Posted
I am sorry to hear this. On what is happening to you, you'll hear different views here, from relapsing PMR to an unrelated rheumatic/inflammatory condition. Since your original symptoms were near classic PMR, and responded pretty well to Pred, I would suggest these horrible symptoms are more likely to be something else. That doesn't make it any easier to endure or treat. Either way, it is quite likely to respond to an increased dose of Pred, but I would want to explore a diagnosis with my doctor or rheumy - if possible before increasing Pred.
Cyn1965 dmart7
Posted
Thanks for responding. I presume too that an increased dose of pred will help but I don't know what dose that will be. I managed to get an appointment this upcoming Thursday with the Rheumatologist., so we will see. I really didn't want an increased dose because then I would have to start taking the RESIDRONATE again which always makes me feel sick!
EileenH Cyn1965
Posted
Almost all the people I know on the forums with a similar story - getting to a very low dose or no pred who have then at some point had a relapse of the PMR have said the same: the two episodes were different in all sorts of ways from symptoms to response to pred (dose required) to duration. It hasn't mattered if it was 6 months before they relapsed or 6 years .
I have a more persistent form - it relapses in the form of a flare of disease activity every few years and I have never managed to get off pred in the meantime although a couple of times I did manage 5mg successfully. To some extent the flares differ - although strangely at the moment I am having a flare that is very very like the way the PMR manifested originally 15 years ago albeit it has appeared more quickly than then when it took several months to build up and now it has been just a couple of months with a sudden increase as a result of a stressful situation. I also don't have the hand and foot symptoms you describe now but I did then, and how! But at present I'm already on 15mg ...
My experience on 3 forums over a period of well over 10 years persuades me there are not only up to 5 different forms of PMR but even within a single person it can vary over time. And of course, PMR isn't the real disorder: it is the name given to the set of symptoms which are often not the same in different patients. but which are due to an underlying illness, in our case an autoimmune vasculitis. Once you have one a/i illness you are more likely to develop another - or is it not possible that each person has their own version of an a/i illness that has lots of commonalities with other people's versions but is individual to them? Many illness develop over time - so does PMR.
alebeau EileenH
Posted
Thank you for sharing all this, I really appreciate your knowledge every time.
I am just over a year into PMR so it is very useful for me to understand how best to proceed with the management of Prednosone.
I am taking extreme caution now in reducing as I have had awful relapses when reducing too fast (as advised by Doctors)
I am the medication manager now.
Thank you all for continuing to share your problems and successes!
Nice also to have company 😀
Cyn1965 EileenH
Posted
Thanks Eileen! You were the one on this forum that helped me out when I was first diagnosed 2 yrs ago and I thank you for that. I had a Moh's surgery for an infiltrative basal cell carcinoma in December and it was after that that these symptoms appeared! My Rheumatologist had said that he thought I had secondary fibromyalgia along with the PMR but things were soooooo good until now! uggg!
EileenH Cyn1965
Posted
The stress of surgery (or anything else) can upset the immune system and cause a flare - as I know only too well.
Twopies Cyn1965
Posted
my complicated mohs surgery in september sent my pmr into a tailspin. then i had another surgery in october which set me back light years in terms of my pred reduction. so--i feel your pain--we'll get there, but its disheartening, isnt it?
nick67069 Cyn1965
Posted
I have had PMR for over 4 years. In the last 2 years, as I get down below 3, symptoms that are similar to yours appear. For me it happens usually at the beginning of summer ( it could be coincidence, but it happened last two years in May/June time frame.
Each time I have seen rheumatologist and at first he thought it was not PMR, but later changed his diagnosis into synovitis related to PMR. Treatment is the same - prednisone. Each time he increased a dose by adding 5mg to whatever dose I had and pains/problems went away in 3-5 weeks.
Whatever it is, make sure that you don't let it develop into full blown flare that would require you to go back to much higher dose to control it.
Cyn1965 nick67069
Posted
yes a full blown flare is NOT what I want. I am leaving on vacation to celebrate my 20th wedding anniversary and certainly dont want to feel like this!
I hope that this summer is different for you Nick because thats no fun....
maid_mariane Cyn1965
Posted
hi there
it's been a good year since I've been on the site. I've had pmr going on 5 years and the symptoms you are describing are some of the early symptoms I had first had before being diagnosed.
I would wake with my hands in a fist and had a hard painful time opening then. My fingers if overwork are in pain. At one point I had a hard time walking my big toe ached and saw a specialist who wrote my dr and said look further.
my neighbor and 2 cousins have pmr and we have similar symptoms but many different. mine are more extreme.
good luck
mariane