Wondering if anyone has come across any articles concerning people who apparently had PMR for years without being diagnosed. I wonder of pmr is worse for them, or if the pmr lasts longer after diagnosis or will they need higher doses for a longer time? I know I was undiagnosed for years and I am almost 3 years in and still struggle to a high degree.
Thanks
Hi linny3, I am in a similar situation as you. 39months DX but probably 12 to 24mths showing symptoms before DX. I haven't come across any specific studies that suggest the outcome for undiagnosed PMR is different from those who have the "overnight" pain/stiffness = diagnosis status. I have thought about this possible correlation a couple of times. I will be keeping my eye out again and will post if I find anything. 🌻
Thanks a lot
I was undiagnosed for at least a year, probably a little longer. But my taper was quite classic from initial 15 mg and unremarkable down to about 2 mg over a little over a year. Unfortunately for the last three years I haven't been able to get much lower than that although things may be improving now, fingers crossed. I did taper using DSNS from 10 mg.
You sure were lucky with your taper. I am envious
I believe I was lucky to find out about the dead slow method so early on. Also, unlike many others I encounter on the forums, I don't have any other serious health issues and had lived as healthily as I knew how all my life - although with PMR I learned there was a lot more I could do!
It definitely helps me that i don't have any other serious health things going on other than shoulder issues. I cant imagine having to deal with loads of things like a lot of forum members
I was diagnosed after at least 2 years and probably more but my pmr is behaving and my taper to 9mg from 15 has been fairly straightforward. I have done it extremely slow with the approval of my gp and rheumy. Its taken 11 months to get to 9mg.YBB
Sure wish I could taper like that. Good for you, hope it continues
I have a theory that the longer you stagger on without diagnosis the longer you have PMR. This is purely what I think based on reading this forum and could be totally wrong.
I have the same feeling. Perhaps this is a bit of research that could be touted at the AGM??
I had PMR for over 5 years before being allowed to try pred - which had a miraculous effect in under 6 hours. Ten years later I still have PMR, have once mananged to reduce to under 5mg but then had a flare a few months later requiring a return to first 7mg and later 10 and finally 15mg to control some cardiac symptoms. Since having a pacemaker fitted I am down to 10mg and that is OK. I tried 9mg and wasn't sure so went back to 10mg for my recent trip to the UK. Now I will try again - if the weather improves: it is raining and cold and I HURT!!!
It is said PMR is a self limiting disorder and they persist in claiming it is gone in a few years - mine never went anywhere in the first 5+ years and it doesn;t appear to have done since either. Pred doesn't make a difference to the disease process, just manages the symptoms by mopping up the inflammation.
Wow. I think you are on to something. I was symptomatic for almost 3 years before being diagnosed. I am now 10 weeks into treatment. The first 4 weeks were just sublime. I responded very well to a starting dose of 15mg..
Unfortunately the first attempt to taper to 12.5 failed and I continued at 15mg for another 2 weeks before being increased to 20 as I was experiencing a flare.
I do feel as if PMR digs in more severely if the inflammation is well established. I know have a new prescription reduced by 1mg but haven't begun taking it.
I know it sounds silly but a busy day yesterday left me feeling a little sore....and I am apprehensive to taper when I'm not feeling 100% out of fear of what happened last time.
On the plus side I now have a referral letter and have the luxury of choosing my own rheumatologist. So I am hoping to begin dorsetladys tapering plan as o feel it makes more sense!
That is what I think. The inflammation was let go for far too long and now my system is being stubborn about creating more and more inflammation . Sure do wonder what it would have been like if I had been diagnosed years ago. If you were symptomatic for almost 3 years before being diagnosed, then 4 weeks might not be long enough to be on 15mg before tapering. Just a thought.
Take Care
I have some sympathy with that view but perhaps it's more like it presents differently to the overnight "type". In that sense it could be one presentation on a continuum of PMR. Some places on the continuum require more time to go into remission. I know mine didn't come on overnight, it was more like different bits of my body stopped functioning effectively or started to hurt, initially intermittently for a couple of years then later all the time. Fatigue, bone numbing fatigue was the only aspect that came on quickly (within a month from start of it until Dr).
Fatigue is awful poopadoop. It's the invisible monster that no one sees. I try to look on the bright side...and most days I can conjure up some sunshine...on others I feel like I'm an ancient rust bucket, years older; trying to keep up with the demands of life that requires the energy of a spring chicken.
I love my family. And I know it may come across as controversial...but i dont think men/boys are geared to nurture (my lot certainly aren't!). They are sometimes aloof...and almost always carefree...
Of course there is the exception to the rule group...! So I really dont want to offend any of the awfully capable heroes out there!
I for one feel awfully guilty reminding my boys I need help sometimes. It's a tough act to balance!
I agree, most men aren't just built to nurture, at least not the way a woman wants to be nurtured. Mine are always available when I need help, but they definitely have the aloofness about them.
Just remember to love yourself first every now and then...
You can not pour from an empty cup...and PMR has a tendency to suck ours dry. X
Ease them into it. You don't want prospective daughter or son in laws to have the same complaint. 😉
For years I had my "lay down or fall down" episodes of fatigue that no doctor could figure out. Finally it was blamed on fibromyalgia. I now know it was part of pmr.
You do it it with both PMR and fibromyalgia. I thought I was just having a really bad fibro flare. Pred helped neck and shoulders within hours so knew it was PMR. "Sdofd" is not pleasant. I use my crutch to lean against....head down or I find somewhere to fall. Then it's getting up!!
😥
It's ok stiffjoints...you get used to having bad days. The point is to enjoy the good ones and I do that.
It's not ok. Love your optimism...but in this day and age its unnecessary to suffer like this. More needs to be done for PMR GCA sufferers...rather than just a pred patch up.
Hmmm....if I ever win the lottery...I shall run a PMR wellness retreat providing the much needed TLC we need!
I’ve realised I ve had PMR for many many years undiagnosed, as well as OA, since diagnosis there has been a good improvement, however, I am having difficulty getting down from 15 pred, I’m sure the inflammation will take a long time to subside.Im in no hurry but the docs don’t feel the same,
Pity they didn’t have more information of PMR as I had many of the classic symptoms for years.
IF you get round to trying a taper make sure you do a dead slow nearly stop taper using drops of only 0.5mg. I say this as drs will eventually try and force your hand so you need a plan b strategy. I hope you continue on the up and up. 🌻
Managed to get some Img from pharmacy, so am planning to go the dead slow route, thanks for advice x
Poopadoop is spot on. Slow and sure really does win the race with tapering successfully!
Hope you make good solid progress!
Took them 6 years to diagnose me and when that did happen it was because I developed GCA.
Ouch. How long ago was that?
Diagnosed in mid 2016. First had horrendous neck and shoulder pain in late 2010.
It's a shame it took so long to get you the right diagnosis and treatment...but im glad you got there in the end. And by the sounds of it you cut it pretty close!
Hope that's the last of GCA you ever see. And I also wish you the very best in putting PMR to bed permanently too!
I do wonder. I've had PMR for over 7 years now, which is longer than average. It took nearly a year of complaining about symptoms to get a DX and then I was started on 10 Pred not 15 that many people start on. Another factor is that I was 51 when DX. When I ask rheumys why I've still got it, they just shrug.
pmr and beer
New here; undiagnosed; suspecting PMR
PMR & INFLUENZA
Has PMR gone?
