1. < Polymyalgia Rheumatica (PMR)
Profile picture for mcds80

What age were you diagnosed?

Posted by mcds80 @mcds80, Jan 5 7:42pm

I am 45 1/2 and was just diagnosed after feeling freakishly stiff and sore/in pain with no known cause for several weeks. I got the diagnosis after doing my own research and asking my doctor about PMR, after which, I was sent for bloodwork and told my bloodwork is consistent with PMR. I’m currently on 10 mg prednisone (have a significant reduction but not elimination of symptoms) and waiting to get into a rheumatologist as I don’t have a lot of confidence in my PCP on this issue. Would love to hear the experience of anyone who was in the younger age range when diagnosed.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

Profile picture for stonewheel
stonewheel | @stonewheel | 2 days ago
In reply to @leighton68 "@stonewheel oh no! Sending you healing energy! Methylprednisolone is terrible, my ears ring so loud, brain..." + (show)
Profile picture for leighton68 @leighton68

@stonewheel oh no! Sending you healing energy! Methylprednisolone is terrible, my ears ring so loud, brain fog, messes with my digestion, mood swings and I've put on 15 pounds! I just started LD naltrexone, I'm crossing fingers, im not gonna do the biologic, I want to get to the root cause, seeing a functional doctor in a few weeks. Good luck, hope you are on the mend soon

Jump to this post

@leighton68 well shucks. This PMR is a real confounding disease.
The very best of wishes.

REPLY
Profile picture for ndep
ndep | @ndep | 1 day ago
In reply to @e441300 "@ndep I agree. We must be proactive with regards to our health. I have read about..." + (show)
Profile picture for e441300 @e441300

@ndep
I agree. We must be proactive with regards to our health. I have read about so many people in this forum who have either been misdiagnosed or undiagnosed and, consequently, have suffered for years with PMR because they rely on doctors who are not educated sufficiently about PMR. My rheumatologist now understands that we have to go by my symptoms rather than my lab results in treating my PMR. Btw, when you relapsed, how were your symptoms? Were they as painful/severe as the first time or not? And how long did it take you to taper off completely from prednisone the first time? Thank you so much for your input and I sincerely hope we all get better soon.

Jump to this post

@e441300 The first time when the doctors didn't know what I had my rheumatologist prescribed me quickly prednisone so the symptoms did not get as severe as now. This time I really WANTED to get diagnosed so the rheumatologist didn't prescribe prednisone before my appointment for a PET scan. Meanwhile the pain got worse and worse to a point I couldn't move when waking up. Very painful fingers and wrists during the night so I couldn't sleep for weeks.
First flare took me 4 months to taper from 15 to 4 mg. But the fifth month I had to take 4 mg I stopped taking it (did not know it was a bad thing to do) Pain in shoulders and stiff muscles in my legs remained for about 3 years and then finally disappeared.

REPLY
Profile picture for rosi75
rosi75 | @rosi75 | 5 hours ago

I was 49 when diagnosed, now 50 so it's been 1 year, but it's had a dramatic impact on my activity level. I started at 20mg prednisone and felt invincible lol... weaned once unsuccessfully, this is my second time off prednisone and trying to ride out the discomfort med-free, with massage therapy, red light therapy, magnets, diet, exercise, you name it. Feel fragile and pain in hips/shoulders/back every day until about 3pm, but I'm holding on to hope that my body will make the adjustments it needs to over time, am trying to be patient and stay distracted - there's a good possibility I am just being naive, who knows??

One more note - I'm so grateful for this forum as nobody around me can understand what it's like but you all do, so hugs to everyone.

REPLY
View MoreView Less
Please sign in or register to post a reply.