New To This Blog

Hi, I'm new to this blog. Have had PMR diagnosed since Dec. 2011. But, I know I had it for a year prior and suspect up to 8 years prior to that. This blog is confusing because I can't seem to pick out the most recent posts, without opening them. I think we can help each other better if we can see the most recent posts and reply. Some advice I have is PMR could be a long term process. So, you may be on steroids for several years. So, keep the dose as low as tolerable, to start. Ramp down slowly. I don't think my doctor really understands how important it is to ramp down slowly. You go down too fast, you can lose all the progress you made. Staying at a low dose, 5 mg or lower is nothing. so, go down slowly. I started at 40, made good progress to 20 in april 2012, then went to 15 too quickly. All my symptoms came back and never went away.I'm now at 12.5mg with all the original symptoms. The doctor insists I lower 1 mg a week. But, I can't go down faster than .5 mg every 2 weeks.
RobinHood1 RobinHood1
51-55, M
6 Responses Dec 3, 2012

I too am new to this blog. Plus my antivirus on my PC won't allow me to get personal messages. Anyway, I was diagnosed last Thurs. Feb. 6, 2013. Just happened to think about the nights prior I thought I had slept on my arms wrong. THen on Monday started feeling achey. My left ankle was hurting but by Tues it was red and swollen. It hurt to sit, my hips hurt my butt hurt , my arms and palms of my hands. By Wed. I felt more pain all over and by Thurs, I was in so much pain I wanted to die and took all I had to get dressed and go see the dr. Almost passed out in our bathroom as I broke out in a sweat as well. I just finished my 7 days on 20mg. Very exhausted and today I hurt everywhere but can move about. I am taking 15mg of prednisone for the next 7 days, then 10 mg. the next 7 days and then 5mg. until I see my dr. At that point he hopes to put me on 5 mg. every other day as the weight gain doesn't seem to be as much as taking 2.5mg daily. Go figure. I'll try his way first as he's been my dr. over 25 yrs. Never heard of this disease before but has anyone checked on disability? I have sleep apnea and neuropathy to boot. My neuropathy just compounds this PMR. Just reading the same info from everyone is discouraging but at least I know there are others out there like myself hurting. How do we find any positive out of our pain or medicine side effects? I want a more positive attitude but presently just don't have the energy to find it. I will be 58 in May the neuropathy has come close to pushing me over the edge this past summer and PMR just added to it.

I agree this site is a needs more organization

Hi Robin Hood, I'm only on day 10 of prednisone. I was very fortunate that my doctor recognized PMR in my symptoms immediately. She did the exclusionary tests, of course, but had me on 15 mg prednisone within one week. My symptoms were exactly what the textbooks describe, but I definitely didn't have to suffer for the length of time most people do before diagnosis and treatment. My doctor wanted me to start on 20 mg, but I wanted to stay as low as possible. So we went with 15 mg, and I could feel relief within 24 hours. My pains and stiffness are probably 90-95% obviously I have a very mild case of PMR. I wish everybody could have the same quick, successful results that I've had. Like you, I'm also new to this blog. I've done all the internet research on PMR, and am replying to you because you said your doctor insists you lower your prednisone 1 mg per week. That sounds wrong. Here's a weaning formula that I read about on another PMR blog site. I shared it with my doctor, and she wants me to use it. It's based on "tricking" your adrenal gland into working again. One of the blogger's rheumatologists came up with this.
To wean yourself from your current 12.5 down to 10 (or whatever amount you want to get down to) over a 4 week period:
Week one: you'd take 12.5 on Mon, Tues, Wed, then 10 on Thurs, 12.5 on Fri, Sat, Sun.
Second week: 10 on Mon, 12.5 on Tues, Wed, Thurs and 10 on Fri, 12.5 on Sat, Sun.
Third week: 10 on Mon, 12.5 on Tues, 10 on Wed, 12.5 on Thurs, 10 on Fri, 12.5 on Sat, 10 on Sun.
Fourth week: 10 on Mon, 12.5 on Tues, 10 on Wed, 12.5 on Thurs, 10 on Fri, 10 on Sat, 10 on Sun.
Fifth week: all 10.
I'm only a novice at this, and certainly don't have the experience that others on this site have with PMR. But if this method works, and if it can help you or somebody else, I felt it was important to share it. Good luck.

Yes, Robin Hood, I feel your pain(literally), It is really hard to regulate the doseage of predisome, but outside of the pain, I hate the gain in weight. My doc understands and is really good about helping me. I got a 80mg shot of cortisone, a week ago, which helped. I was on 10 mg and had to up it to 15mg, which right now is helping, but I think my getting relief from the pain has more to do with the shot, then the amount of doseage. Hang in there and lets deal with this @#%@# as much as possible. I am in TX.

Hi Malen, hope you start to feel better. I'm in New Hampshire. 15 mg is not bad. If you just sarted, try to give it a few weeks. Don't over excercise, even if you start to fell a little better. I gained ten pounds when I was above 30 mg, but, lost most of it when I got below 15 mg.

Hi Peggy, I think dropping 10 mg in a week is too much. I'm at 12 mg and dropping .5 mg every 2 weeks. Ask your dr. for a prescription of some 1 mg tabs. then you can drop 1 mg a week or 2 mg a week. I would recommend you avoid going back up. Tough it out at 30 and drop slowly, when you can. I've been on MTX since July. Doctor says it takes about 3 months to kick in. can't say it's helped. But, I seem to be able to lower my dosage a little more than before i started MTX.

I have had the same thing happen, but I first went blind in my left eye in July 2012 and had TEMPORAL ArtritisI, I was given one thousand mgs of Predisone IV for 3 days and got my sight back. I also found out I had PMR, which I think I had for a year or more. I was then put on 60mg for two weeks and I never felt better then 50mg for a week and still feeling good then on 40mg and in a few days I was back to being weak as a wet kitten. I haven't felt good since the 2 weeks in July. I'm taking 30mg of predisone and Mexotrexate has been added a month ago with no improvement yet. I would like to know the symptoms others are having and if anyone ever has a time when they feel better.