Hello there. I am new to this form and just recently diagnosed with PMR. To complicate matters I also have a mild case of MS. (Few symtoms) But let me say this, the PMR has really knocked me for a loop. I have been going down hill fast over the last several months after having knee surgery. When I started having PMR problem they thought I was having an MS flar-up. Guess what they gave me prednisone and IV steroids. The symptoms went away until a few days after I went cold turkey on the steriods. (Big mistake) Now after another 3 weeks of hell, I am on 40mg of prednisone for 3 days and yesterday cut it to 30 mgs per day. My symptoms are coming back after 2 days at 30mg.
Here are my questions
1. Are there any other people out there with both MS and PMR?
2. It seems that 20mg/day is more common, but do some people like me need to be as high as 40/day to keep the PMR in Check. And if someone has experience at this level how fast did they come down from 40mg/day.
Dropping from 40 to 30 didn't work too well. I see my doc tomorrow,so let me know what you all think.
PS My PMR at it worst was bad enough that I couldn't walk or lift my arms. Right now it just hurts like hell and I feel stiffness all over.
Thanks for your thoughts. This is my first post to a form.
Craig
1st of all I am sorry for what you are going through & glad you found the forum/
I do not have MS not have I been as high as 40 mg - However, I didn''t want to leave your post unanswered. I know I have seen posts from people who have MS, but can't remember who or when. I am also sure there have been many on 40 mg. Have you searched the archives?? I would try the search for the MS 1st - Good luck and decrease VERY slowly!!! 40 down to 35 but 40 2 days 35 1 day 2 days 1 day for a week. Then every other day, then the complete decrease. I actually did just every other day for a week from 20 to 17.5 then to 15,25 then to 12 then to 10 - everyone here will tell you SLOW is the only way.
Good luck!Hi Craig
I'm glad you found us, even though I'm sure you would rather not be here! I don't have MS, but did start on 40mg. Like you I was in great pain at the beginning, and couldn't lift arms, get up from chairs etc. I was very fortunate with my GP who realised what it was very quickly and prescribed 40mg of pred while the blood tests were being done. I can't remember the exact timing, but I think I stayed on 40mg for about 4 days, before dropping to 20mg. I took 20mg in the morning and by afternoon the pain was back with full force. I rang my Dr who said to take the remaining 20mg, and he then turned up at my house at 9.00pm to see if that had worked - which it had. His belief was that you have to get the pain under control initially, and that means getting the inflammation down - and then go down slowly to the lowest dose which controls the pain. I stayed at 40mg for another 5 days, then went to 30mg for about 4/5, then 25mg and then 20mg. That took about 3 weeks, and then I started going down more slowly. After 18 months I'm down to 1mgThanks for your post, I plan to stay at 40 for a few more days and then get some 5mg and 1mg pills so I can start the slow reduction. 40 to 30 was just too fast. Also your thought as to getting things under control for a week or so may be a good idea too. One reason I was interested in if anyone out there also had MS was, I have read that the CD8- T-cells that are effected by Prednisone and show a reduced number with PMR are actually increased by the MS treatment of Copaxone. I am not a scientist but it seems that the copaxone could speed up the recovery from PMR. When things got really bad I quit the copaxone and now after reading this I will go back on it today. I will keep you all posted on my progress with this plan.
Ps Margaret I was impressed that your doctor actually showed up at your door. I can't seem to get them to call me on the phone. Good for your doctor.
Craig
I'm in England, so the set up is a bit different, Craig. Even so, it's unusual - I was very lucky.
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