Posted , 16 users are following.
Hi, I'm new with PMR and GCA only since April 2016. My Dr told me I will have it up to 5 years, then hopefully will burn out. I read a lot on here of people who have had it 10 year and more. That does scare me some : Thanks for any info and personal feed back. Dea
0 likes, 23 replies
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renee39320 dea13
Posted
Don't be scared! The people on this website are so helpful. My dr told me the average is 1 1/2-2 years. I expected it to be 2-3 years. Well, after starting at 20 mg in March 2015 and SLOWLY decreasing, I'm off prednisone! I have minor aches and pains, but Advil takes care of that now (which didn't help when I had PMR). I call my new aches and pains (and fatigue) the "new normal". Hang in there! You could be one of the lucky ones!
pam7653 dea13
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63 year old female and I'm heading into year 4. I'm currently on 5 mg. I have occasional flares where I need to up my Prednizone to 7.5 or 10 and decrease. That seems to happen more frequently lately. I have very few side effects from Prednizone. Occasional itching on my arms and of course bruising easily. That's about it. I'm lucky. Anything is better than the pain in endured before I was diagnosed.
EileenH dea13
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I've had PMR for more than 12 years and have been on pred for over 7 years now.
Top US experts reckoned that 25% of patients are able to get off pred in under 2 years but then are at an increased risk of having a relapse. Half of patients take up to 4 to 6 years to get off pred - and the German rheumatology textbook says an average of 5 years. The rest of us take longer, a few even end up on pred at a low dose for life although some of them may be on pred because of adrenal function being poor or non-existent. These figures are disputed by some rheumies - but they certainly fit with what I have seen on the 3 forums over the last 7 years. I know a few people who've had PMR/GCA for years, the bulk have got off pred in about 5-6 years and a few were luckier.
There is no need to be scared - you get used to it and know what you can and can't manage. For many the pred doesn't cause too much bother. I had gained weight with PMR because I couldn't exercise, it rearranged itself with prednisolone. Then I was switched to Medrol - that was awful and I gained a load of weight and had other side effects including steroid induced myopathy. Then I was switched to a form of prednisone - lost all the weight and my muscles went back to normal. Now I'd say I have no noticeable side effects - not even bruising despite also being on an anticoagulant. I lead a pretty well normal life, travel widely and feel well. Which is all that really matters.
leonard12916 EileenH
Posted
Eileen, in the above post you mentioned you 'were switched to a form of Prednisone and lost the weight you had gained and your muscles went back to normal'. I commented in my post the other day that I've been on steroids for 3.5 years and in the last 6 months my arms and shoulders, (mainly the left one), have begun to ache and become weaker. With painting and making greeting cards being my main hobby this has created a real problem for me. Have you found with others that the muscles with this steroid myopathy can regain some of their strength or is it a permanent loss? My doctors had me on Prednisone for 2 years and then switched me to Cortisone the last 1.5 years with the hope that my body would be fooled and let me reduce my dosage more but that has proven not to be the case. I've been stuck at between 7 and 10 mg of Prednisone the last year. What would you think of the idea of my discussing with my doctor switching back to Prednisone? I realize it's longer acting than Cortisone? Is there a particular type of Prednisone that might help improve my muscle strength again in my arms?
EileenH leonard12916
Posted
No way of saying - everyone is different, I just used the example to show how different even one person can be in response to different corticosteroids - i've had all 3 medium acting ones and responded differently to them all. Here in Italy I can have Medrol or this particular form of prednisone, no other choice. I have to say - everyone I know who has been on Lodotra (Rayos in the USA) has done well and we are fairly sure we manage with a lower dose than other steroids. But it isn't available in the UK except privately and costs an arm and leg in the USA (far more expensive than the UK I might add)! Insurance MAY cover it - but who knows.
BettyE leonard12916
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The description "weak as a baby" applied to me while I was on Prednisolone. It certainly was not permanent damage for me but I'd say it took about two years to get back to full strength. The improvement began in a small way and over time I surprised myself by feeling able to return to more and more of my usual vigorous activities. I can now stand at the top of a bank and strim the grass. Hope that will offer encouragement.
amkoffee dea13
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EileenH amkoffee
Posted
I have no idea what world they are living in! The only thing I can think of for the rheumy is that his patients go back to their GP and he doesn't really know what happens. The GP I suspect gets his patients off pred because it is "Too dangerous to stay on it longer" and they give up going to see him - as I almost did when not diagnosed.
We have asked doctors why they are so hopelessly optimistic - they don't like to upset the patients they say. Which is fine - but when those patients are still on pred or in pain after 2, 3 years they come to the support groups/forums feeling they have failed in some way, haven't done things right. And we have to pick up the pieces.
RD_Swede dea13
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Swedish TV had a few minutes last Monday about pmr and GCA. Unfortunately they said that it takes 1-1 ½ year. I wonder why doctors don´t get updated nowadays with such a good information source as internet. For me it took 3 ½ years and now I have been off pred for 8 years.
dea13 RD_Swede
Posted
BettyE dea13
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I've had it twice with three years in between. First time took three years, second time took five years and eight months. It might have been five months less but I was told not to stop my minute dose while I was recovering from hip replacement. Have now been pain free for three years.
reggie92967 dea13
Posted
Dea, I was just diag. a year ago July. I was referred to an incredible Rhuematologist specializing in Fibromyalgua, Lupus, PMR, RA, etc. etc. He is great, office is at Rush Univ. Hisp. Chicago. I drive 5-hrs. from MI to see him & another specialist for another health problem. He has not put a time factor on my PMR, expresses it can go away sometimes 1-2 years, but don't ever really know for sure. I've read & researched & found that PMR is still more so a diagnoses from the symptoms, & reaction to steroid, rather than name of a specific disease ? I know many people have PMR for many years. I was, from my 1rst visit, with the specialist put on a 1p-day trial of prednisone. Within days I felt like Superman. That did subside so dose was increased, then decreased, then increased & I continue to do trial & error with the steroid. Best to you.
Anniecurd dea13
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I started on 15mg of pred on August 2015, I am now on 1.5mg. My rheum wants me off the pred by the end of November. I'm reducing by one half mg every two weeks, so hopefully I'll get there. But, I am prepared for the eventuality of a flare. I know I will be lucky if I can avoid it. I have plenty of preds if need be. This forum has been a godsend. My rheum is like most docs: PMR lasts for a year, and pred takes care of all the pain.
Anhaga Anniecurd
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How are you feeling?
Anniecurd Anhaga
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Actually, I'm feeling pretty good. I do have some upper arm discomfort if I overdo it, like picking up grandkids endlessly. But this week I did a pretty strenuous hike up a mountain 5000 ft above sea level and I thought I'd be wasted the next day, But I felt good enough to go on another hike. On the other hand, sitting in the car for ten hours did make me a bit stiff. But my husband was stiff too and he has nothing wrong, so it could be just age catching up with us.
Anhaga Anniecurd
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Anniecurd Anhaga
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I'm keeping my fingers crossed.