Posted , 13 users are following.
55 years old and have PMR for 2 years , first flare responded really well and got down to 1 MG of prednisolone before having to return to 5mg as maintenance.however it came back again couple of months ago and am now back on maintenance dose. Was very active prior to this and am a keen runner whilst I have come to terms with no more marathons would like to keep running , does anyone have tips on how to manage.
2 likes, 25 replies
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pam7653 tracey81846
Posted
I was very active before PMR, but major stress in my life in 2011 kicked me into PMR. I was an active runner and participated in Tri's too!
I'm heading into year 5 of PMR. I was able to maintain at 5 mg the first 3.5 years. The longer I have PMR the more flares I'm having. I've had to bump up to 20 mg to get the pain to leave the last year or so. Im trying to get back down to 5mg. My pain seems to radiate in my left hip area, last year it was in both feet.
I still cycle and swim but the running is too much. Let's not forget the head sweats for me are horrible.
If I did run I'd probably look like I ran in the rain.
I tried to run this winter in the cold. My feet were killing me. I've had a lot of foot surgeries, but this was a different pain. Good thing is no head sweats at 20 degrees.
I won't let PMR run my life, but it can slow me down.
heather39822 pam7653
Posted
Pam, my head sweats is (are?) possibly the worst side effect I have from this awful condition. I pour. Have not found anyone with the problem as extreme as mine and have not determined whether from PMR (diagnosed nearly three years ago) or the Pred. So constantly on the Pred see-saw - up-down, up-down, as the low digit mgs beckon, enticing but mockingly out of reach. I live in Africa so you can imagine how I suffer in this heat. Sorry you suffer similarly but relieved I'm not alone.
pam7653 heather39822
Posted
I can't imagine the heat where you are. I try to wear my hair up but when I take it down it's soaked. Really gross. I live in northern Indiana and the summers here are hot and humid too. Luckily I live on a lake, so I just jump in!
I commented to this post below about the head sweats again, so maybe Eileen can respond.
rachel24455 tracey81846
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Anhaga rachel24455
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I have heard of people running again. I don't know if they were on this forum, or Healthunlocked. I think the secret is to never overdo it - and learning that limitation can be a bit tricky as we may feel great and do just too much and set ourselves back. Why not start with one of those training programs beginners use? You'll be able to ease back into training at a slow rate. Check your running shoes are right for you, maybe you need more or different support than you did before PMR?
Anhaga tracey81846
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shelley45866 tracey81846
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tracey81846 shelley45866
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shelley45866 tracey81846
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dan38655 shelley45866
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Thank you shelly45866 for that tip on taking Advil/Ibuprofen before a workout.
I will try taking it before the next time I have to mow the law (mow the weeds) on my hilly property in a few days.
I mowed the lawn yesterday and felt almost sickened today, with burning pain in my shoulders.
There is something about aggravating the pmr-afflicted joints with hard work that seems to create a feedback loop to the systemic, chemical source of pmr. I was tempted to further increase my pred dosage for a day, but I had already increased from 1.75mg to 2.5mg for this Spring's yard work season.
EileenH tracey81846
Posted
On the NE of England charity site, link is the first one here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
if you look under the About Us/Our people bit on the left side of the blue bar at the top you will find an article about John Robson - he was a fire fighter and ran long distance races when PMR struck, putting him into a wheelchair. He is back running and climbing mountains.
Anhaga tracey81846
Posted
Dan posted on this thread today about his running:
https://patient.info/forums/discuss/zero-prednisone-discussion-450915?page=1#2670834
tracey81846 Anhaga
Posted
I wish I had found you lovely people 2 years ago, have felt really isolated with this illness and your support is fantastic and I didn't realise head sweats are a symptom , thought it was the menopause!!.
pam7653 tracey81846
Posted
Not sure where these head sweats come from, is it the PMR or the Prednizone? It started my third year on Prednisone. I'm starting year 5. It can be embarrassing for sure! I love working in my yard, but I need to keep a towel with me, just for my face.
I'm getting older too. I will be 64 this summer. I want to do so many things before I can't do them, let it be my age or this PMR. I retired this year and so wanted to do a road trip west. I drove for 2 days in April to So. Carolina and wow did it throw me in a flare! So my 3 day road trip to Colorado is a no go. I did plan a trip to Canada which is a 3hr drive and train ride. So you just compromise. That will have to do to celebrate my retirement.
I just keep moving along. Oh, that women's event in Canada in June I'm going to east of Toronto, includes a high ropes tree course, zip lining and night hikes. I'm very excited!
Anhaga tracey81846
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Anhaga pam7653
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You are braver than I! I haven't done much since starting pred. Before diagnosis I had a trip to England to visit my cousins. I was carrying a heavy backpack all day upon landing (my room wasn't ready so I kept my electronics as well as wallet and water bottle with me) and thought I'd be a mess the next day. In fact I felt better all that week than I had for months before, and better than I was to feel for about another eight months when I finally got a diagnosis and treatment. So who knows? I must confess, however, that I begged off the evening to go see Guy Fawkes fireworks in the rain!
pam7653 Anhaga
Posted
I'm traveling as much as I can. I'm in year 5 this year with PMR. A trip to Greece is this September with my daughter. I live in the states. I will take extra Prednizone with me just in case. I know how to regulate it when things get bad. My Rhumy let's me handle it. You just need to know when to rest.
Make adjustments. Take a suitcase on wheels, extra meds, rest a lot and have fun.
EileenH pam7653
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"Not sure where these head sweats come from, is it the PMR or the Prednizone?"
Both - PMR can cause sweats, GCA is even worse, but they are also listed as a side effect of pred. Apparently there are doctors who haven't read the literature about either - someone told a patient recently they aren't anything to do with pred or PMR! I wonder if the pred side is part of the mechanism of reducing the inflammation - sweating it out so to speak!
I still travel long distances - we drive to the UK and back every summer. But now we don't drive for more than 3 or 4 hours a day, stop somewhere nice for the afternoon and evening meal. Once in a while it doesn't work out and we have to drive 6 or 7 hours - and while I say "we" I do pretty much all the driving as the driver's seat has a lumbar support, passenger seat doesn't and I find it uncomfortable. Then I feel less well afterwards but it doesn't send me into a flare. I think it is more the "add-ons", the myofascial pain syndrome and so on. But taking an extra couple of mg pred for those days also helps a lot I find.