PMR from a younger than average age and undiagnosed for years
Posted , 10 users are following.
Hi - as per the title I have had this undiagnosed for 5 or 6 years. Finally it hit me like a truck and I got diagnosis and medication just over a year ago. My experience is not unlike that of Eileen H who is an expert on this forum.
Anyway my exxperiences of coping have been a bit differnt to some - having had my family fairly late in life i still had a child at primary school as well as a job when i first got the condition!
That's just by way of introduction - my question at the moment is this. Having had the condition for years I now have the symptons under control but I know it is still very active - I am having to be super careful with tapering and have had a few set backs.
Is there a known link between age at onset and the amount of time it hangs around? Or perhaps a link between having the conditon untreated for a long time and the time it takes to go into remission or to get off steroids. I'd be interested both in any research anyone knows of and of course personal experiences.
Thanks for reading.
0 likes, 36 replies
gillian_25383 greentea26
Posted
greentea26 gillian_25383
Posted
Thanks for replying. I'd be intersted to know if you got off pred altogher during your short remissions and how long the remissions lasted for.
Are you back on pred now?
gillian_25383 greentea26
Posted
Daniel1143 greentea26
Posted
You will hear lots of opinions on this site. From my experience, PMR has a mind of its own and everyone's journey is different irrespective of when they were diagnosed. By the way, what do you mean by "too young?" How old were you when you first began experiencing symptoms? You'll find many people on this form who have contracted PMR much younger than the age doctors say it first appears
greentea26 Daniel1143
Posted
Thanks Daniel - it is hard to pinpoint my first symptoms bu we are talking about in 40s.
I'm aware that many people on the forum also got symtoms at a younger than texbook age and that I am not alone. I was just wondering if there was any relatinship between that and the time the illness takes to run its course.
sharon35553 Daniel1143
Posted
Hi Daniel,
I agree many have had signs younger than claimed. Yes every ones journey is different but one thing is the same for us all, it is a disease that affects our daily life and without the pred in most cases if not all we would be in agony. I have tried and tried the slow taper and know that when I reach that mil thats not working I need to go back up but by then it seems that it still never gets back to where the first initial dose worked. When fisrt diagnosed I was started at 20 mil and was a new person within one day, every bit of pain gone. I mean it was like magic to wake up one day not being able to walk or move and then its gone, and before the pred was prescribed the Dr's tried several anti inflamatorys which did nothing. Anyway good luck to you!
Sharon
EileenH greentea26
Posted
Not any I have come across. Though my impression is that those of us who are younger do have a harder time getting and then sorting out pred because many doctors go about it like bulls in chinashops because they don't understand the nature of the beast and believe the textbooks tell the whole story - which they never do.
Some time ago I read a publication that said 25% get off pred in under a couple of years, about half take 4-6 years and the other quarter take much longer. Elsewhere I have read that some experts feel that younger patients are more likely to present atypically - so we tend not to get diagnosed easily, age aside. And I suspect there are a lot of younger people who develop PMR and aren't ever diagnosed BECAUSE they are atypical. They are told it is fibromyaligia or ME and that it can't be managed well with anything.
Personally, I would like to see EVERYONE with symptoms that fit and where everything nasty has been ruled out trialed on a short course of moderate dose pred. If that works - then more work should be done on them. If it is an autoimmune disorder then they won't be able to cure it, it must be managed as best possible. And if that means pred - then that means pred. Without making a big deal you have been on it "too long" or scaring the poor patient to death predicting they will crumble in a corner. There are ways and ways of presenting risk!
greentea26 EileenH
Posted
Thanks for your very useful reply and the stats on how long people are typically on pred. The young GP who finally diagnosed me said I'd probably be on it for 1-1.5 years! I wish..
You are so right about atypical presentations being misunderstood. . When I first complained of symptons my GP ran various tests including ESR and CRP which never showed anything (my ESR was raised when finally I got to the hardly abe to function stage but not before) Anyway I was given various possible explanatons ending up with a suggestion that I start on anti dperessants. This even although all my symptoms were physical and I had never once complained of an even vaguely low mood!
The GP who put me on pred still ordered an ESR before making her diagnosis - but she put me on 20mg pred immediately without waiting for the test results.
What a magic effect that had...
EileenH greentea26
Posted
Somatization: the manifestation of psychological distress by the presentation of bodily symptoms.
It's a common get-out attempt.
pam7653 greentea26
Posted
I am a female and was diagnosed at age 60. I am now 63 and active. I can still kayak, swim, cycle and recently took up curling. I stay as active as my body will let me, but I don't over do it. I had the typical symptoms at age 58. My symptoms started as pain in the joints from my hands, to my knees, especially in my left hip. Prednizone was a lifesaver for me. I'm heading into year 4 now. I've had a few flares, mostly in the fall of the year. That's my stressful time of year in my volunteer work. Last year I had more than usual and I'm guessing because I had 2 major surgeries in Dec. of 2015. My body just can't handle the stress. I'm good so far and for a bit last month thought I could get off Prednizone. I'd realized I'd missed 2-3 days of my medication with no pain, so I tried to stay off. I'm only on 5mg. I attempted to take it every other day as suggested by my Rhumy. Nope! By day 6 it hit with a vengeance. It took 10 days to get back to normal, if there is a normal.
If I think back to my late 40's I remember having times when I couldn't life my arms above my head. It was on and off for years. I'm wondering now if it started that far back, can it do that? There was never an explanation for it. Can it come and go for years and then hit with full force?
amkoffee pam7653
Posted
Pam I'm exhausted hearing what you do when you take it easy. LOL I'm thrilled that at 63 you can do all that with PMR. I have other problems as well but I sure wish I could do all that. You have fun with all of that kayaking and everything else you do. Have fun for the both of us.
greentea26 pam7653
Posted
I think in the early days with me before I was diagnosed it did come and go a bit, yes.
mimi1950 pam7653
Posted
I remember at least 3 years before my diagnosis, a couple of episodes that lasted for about a month of feeling so exhausted with pain all over my body that I was basically bed bound. I was told it was a bout of osteoarthritis . Then it just went away and I was fine till it didn't go away for five months with the added classical pmr symptoms of hip and shoulder pain, which after 5 months on Prednisone are much more pronounced than ever when I over do activity or try to taper improperly. There are things like shaking out a comforter after I put it in the cover that I just discovered causes me lots of pain in my shoulders. I can't imagine having PMR hand holding down a job. This of you who do- I really admire you!
EileenH mimi1950
Posted
You don't have "bouts of OA" - what are they on?
sharon35553 pam7653
Posted
Im 64 and also have suffered for years but it really hit me a year ago when I couldnt move my legs or arms. I was started on 20 mil immediately and wow, superwoman again within a day. Wonderful yes until Rheumy started the taper and Ive neve rbeen superwoman again.
Doen to 10 mil, lowest a few months back was 7.5 and wow what a flare. Have stayed at the 10 for almost three months and really hurting all over, especially my back, shoulder and now suddenly my entire rib cage. One Dr tells me to go back to where I was comfortable, thats my Internist and the Rheumy wants me off the pred completely. Go figure who to listen too.
Good luck with all this and boy what would we do without this group!!
Sharon
EileenH sharon35553
Posted
It's the equivalent of an internist I see here in Italy - and he is also totally realistic about the amount of pred we need. I do wonder why rheumies are so scared of pred.
EileenH
Posted
pam7653 sharon35553
Posted
Listen to your Internist. My advice though I'm not a doctor is to get yourself to a point with your Prednizone that you are comfortable. If that means 15-20mg so be it. I'm comfortable at 5-7mg depending.
My Rhumy trusts me to regulate it myself. He did ask me to try to take a dose every other day. Ok, I tried that and by day six I was in a lot of pain. It took 10 days to get back to normal, if there is a normal.
Your doctor doesn't have PMR, you do. Be your own advocate. You'll know when you can start to drop your dose. This forum has many methods, but first try to get yourself to a point of being comfortable. Good luck