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I think I have PMR and I’m terrified
Polymyalgia Rheumatica (PMR) | Last Active: 2 hours ago | Replies (85)Comment receiving replies
Martyn, welcome to the PMR club (if that indeed is what you have; you will get the answer soon after starting your prednisone, either within hours or a few days). This is a club nobody wants to be a part of! I was exactly in your boat 3.5 months ago (I'm 10 years older than you), lifelong athlete, cyclist, "perfect " health, petrified by this mysterious disorder I'd never heard of and even more scared of the steroid treatment side effects. You will likely go through several stages like: why me? how did this happen? feeling like an old man, incapacitated; denial, acceptance, learning to live with aches and pain, etc. There are Facebook groups touting a prednisone-free PMR journey but I imagine there are relatively few who could tolerate for 1-2+ years the debilitating, excruciating pain that characterizes PMR. Slowly you will get used to prednisone. If you are one of the fortunate souls it could be measured in months (I'm still hoping for this) of taking the drug or years. The good news is that I can still cycle especially in the afternoon/evening almost pain-free (100 km/60 miles, relatively flat) in one session or 50 km/30 miles with 1000 m elevation gain). But everyone is different and you will have to figure out what you can tolerate. I've noticed very little "additional " pain after these rides. What I miss most is being able to do is certain upper body weight training sessions. Keep us posted on your early prednisone results and best of luck moving forward!
Replies to "Martyn, welcome to the PMR club (if that indeed is what you have; you will get..."
I thought I could still ride my bicycle when taking Prednisone after PMR was diagnosed. It was not the smartest thing I ever did. I hit the proverbial wall after 30 miles or so. I had to stop and lie down in a ditch with critters crawling all over me. I checked my pulse thinking I might die at any moment and my pulse was irregular. Fortunately my brother was with me and he doubled back to find me. He thought there was something wrong with me because I couldn't keep up with him. Usually it was the other way around.
I'm not sure how I got home but I called my primary care doctor about an irregular pulse and the sheer exhaustion. He wanted me to do an EKG which detected the cardiac arrhythmia and left ventricular hypertrophy (LVH) which was attributed to my prednisone dose and "possibly high blood pressure." My blood pressure was discovered to be in excess of 210/110 in an emergency room a few days later. I found myself suddenly being started on 3 blood pressure medications by a cardiologist when my blood pressure was never any problem before this.
Definitely monitor your blood pressure when on prednisone. Some exercise that doesn't require too much endurance might be better than a long distance bicycle ride. I have learned to find pleasure from aquacise with the older ladies in my class with almost no men.. At least the ladies seem to think I'm still very fit because of how I jump into the swimming pool. I also can swim some laps without too much of a problem since getting off of prednisone now that PMR is under control.
I have ridden my bicycle a few times since stopping Prednisone. All three blood pressure medications have also been discontinued since Prednisone was stopped.
@dave923 Thanks for your reply and such a positive outlook. I've just read it again after a particularly gloomy afternoon in which my mind has become totally pre-occupied on what impact PMR is going to have on my life. I'm hoping that my age and general fitness levels will help me stayt active. I was really encouraged to read that you are cycling 100km as that's my sweet spot on a bike with a few hills thrown in. Maybe I'll have tomanage my expectations but as Eddie Merckx once said: “Ride as much or as little, as long or as short as you feel. But ride." thanks again and good luck to you
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@dave923 YThank you @dave923 ....i was thinking could i just 'tough this out' and put up with pain but i think that will just open a can of worms and be thoroughly miserable. I dont know if you had this but this morning (this is before i started taking any Pred) i felt about 50% better than the previous morning so in my silly head I start to imagine that maybe it's goign to magically disappear! did you notice pain levels vary before you started the medication journey? I'm down to take 20mg for the next 5 days and then have my follow-up with specialist. I will have to confess to him that I'm only taking 15mg! I'm now going out for a short ride. Bizarrely lasty week i was in Mallorca where my wife is from and I love riding there and even with barekly being able to use my arms I could still ride in the heat and it actually seemed to help as when i returned later I was looser. So I'm going to try and keep rolling as much as possible but maybe leave my return to Mont Ventoux until next year when hopefully I'll be on the right path to getting over this ! All the best