I have been reading these post with great interest since being dx with PMR back in August.
My pain and discomfort started back in October 06, with what I thought was a pulled butt muscle. I am an avid jogger, working out most lunch hours during work time. By Christmas I no longer could bend over and touch my toes, losing all flexiblity. By April, I couldn't raise my arms, get up from a chair, or turn over in bed. After numerous blood tests in April, my sed rate was only at 11, nothing showed up. By July my sed rate was 54. and I was desperate for answers. My internist thought it could be SLE or polymyositis. Those results came back negative. I was put on 60 mg of Prednisone on August 1st. You may find this hard to believe but within 4 hours of taking one tablet I told my husband that I already feel relief. That night I had the best sleep in a long time. Since August I have been a reduction in dosage by 5 mg a week. Tomorrow I am on 15 mg. I have had very little side effects from the Pred., one being loss of sleep while taking the higher dosage,but that has improved. I am back at work after being off for 3 months, and I am now able to get back to exercising again, although at a slower pace. I feel my life is getting back to normal, if ever life is "normal". I hope, with careful monitoring from my doc, that I will be off the Pred. by the end of the year, and that no symptoms will come back.
Glad you got the diagnosis Sue + the relief!!! None of us doubt the relief you
felt... I had all the symptoms you mentioned for a year. 10 mg of pred and I
not only sat through a movie, I drove 2 hours, went to the movie, then got
up and walked out of the theater without pain or it taking 10 minutes to
straighten! When we got outside I realized it and said to my husband " I just
walked out of the theater!!!"
Then I slept through the night for the 1st time in months. It can be a
miracle... that is the reason we take it despite the side effects!
Hope yur recovery continues this way.
pgrSueMac, Glad you're getting relief. What you need to do now is be careful with dosage tapering. You plan to drop from 15mg to 0mg in 12 weeks and from all the experiences on this forum, your schedule is much too ambitious. It seems that 10mg is like a barrier to be overcome very gradually, maybe 1 mg per month, or even 0.5 mg per month as the dose gets really low. Remember that your reductions are percentages and that a 1mg reduction from 10mg is 10%, while a 1mg reduction from 5mg is 20%. Be patient! Good luck!
Hi, SueMac. I'm in a similar position to yours. I have all the standard PMR symptoms, which I've had for over four months. So far all tests for a variety of things have been negative. I was given the seds test a couple of months ago. It was negative. No word was said to me that about 20% people with negative scores have PMR. Now I've gotten much worse. However, I recently became very proactive and again told my doctor that I think I have PMR (of course, I'm not sure yet). Anyway, she was responsive and steps are being taken. I will report the status quo as soon as I know more.
It's great that you're finally getting help and that your system has responded so rapidly. Good luck with contimued improvement and happy jogging.
Hugh
Hi Sue, welcome to this group. As you can already see, there is much, much
Hugh, Sed rate doesn't always tell the story. My family doctor suspected PMR right off but the blood test he had me get didn't show a sed rate outside of normal, so I spent a month or more hurting while waiting for a rheumatologist appointment. I was put on 15mg prednisone immeditately and within a day or two, experienced great relief. It appears that the prednisone relief is the final determination rheumys look for in diagnosing PMR.
My suggestion, therefore, is to beg, borrow, or steal from your doctor a prescription for prednisone at the earliest opportunity. Why suffer any longer than necessary? The usual initial dosage is 15 to 20 mg, but some forum members were started much higher, maybe because they had some symptoms of giant cell arteritis, or maybe because their doctor wanted to knock the heck out of the inflamation before reducing the dosage.
Anyway, stay proactive, even aggressive, in getting relief. A lesson a lot of us learned only after weeks, months, and even years of unnecessary pain. Hang in there, Hugh.
Sue,
Glad you are doing so well on the predisone and getting back to a regular routine.
I was diagosed in Feb, 07 and am doing the up down routine regarding the reduction of Medrol. This time, I am going to insist on a slower drop. Made it to 8 mg for a few months, and then had a really bad flare. Now, even with a higher dose, having some issues.
At least here, among others with the disease, you can run ideas or feelings past them.
Wonder why no one really investigates this disease like others in the media spotlight. Guess Opra or someone else important would have to have it in order to get coverage.
Donna, NY
Suemac, I was dx and put on pred. in Aug., also and at 60mg. I have been on 15mg the month of sept. and probably will be reduced to 14mg next week, when I see the Dr. My main problem is fatigue, I find I can only do 1 or 2 things in a day, then must rest. Glad you feel like you are getting back to normal. Keep us posted, as I would like to compare with you, since we have been on the same schedule.SueMac,
Just read your post. I am an avid walker and biker. When my pain first started, my butt hurt and any flexibility I had gained over a three year period of stretching was gone overnight. I too thought I had pulled or damaged something during exercise. I could barely walk, let alone walk at an exercise clip. Sitting on a bicycle seat was a new experience in extreme discomfort. And being so tired all the time didn't help either. One of the biggest frustrations of this of this whole episode is how it has set back the workout schedule I was on. I haven’t been dx’d with PMR yet and I haven’t even seen what a bottle of prednisone looks like, but I’m glad you got relief and I hope your WO’s return to normal.
pota
I would never go down that fast. Everybody on this board with experience suggests 1 mg under 10. From my own experience, I reduce by 0,5 mg from 5 mg and down. I stayed a year on 5 mg just because I tapered too fast. Good luck!
Ragnar
you mention polymyositis
Just yesterday I was watching "Mistery diagnosis" where a person was finally diagnosed as having this. I am waiting for an episode about PMR!