Hi everyone,
Figured I could get more informed help from fellow PMR's than from my rheumatologist. You've got to have it to really understand it. I was diagnosed six months ago after about six weeks of hurt (NSAIDS prescribed by my family practitioner, to no avail). Started with 15mg of prednisone and that confirmed the diagnosis. Went to 12.5, then 10 without too much difficulty, but the jump from 10 to 7.5 is not working well.
From your experience, was that too big of a jump now that I'm down to lower levels? How about the dosage relative to body weight? I would think a 190 pound guy would need more that a 110 pound gal.
Final question for now. Seems to me that all the docs are doing is treating symptoms. I've spotted a couple of references implying that bacteria or virus connections may be the root cause of PMR. Anyone else have info on that?
Thanks for your experiences and advice.
Welcome Bob! You will find great support & info here. I would agree w/
BOB,
The drop for 10 to 7.5 should have taken you 3 months. The drop after 10mg-< .in the a.m.> is slow-slow or flareups will occur. 1 mg per month or maybe every 3 weeks if your sed rate is good..Every one is so anxious to get off of this stuff, but must take it slow--take it from some one who has had to learn the hard way. This sight is great-so many nice people. They can get a little crazy at times,but we need to laugh more. And as to cause, mine is or was stress-plan and simple.
Lonna
Hi Bob, nice to have you join us, but sorry you are here - if that makes any sense! I agree with the others that 1mg drops are better. I have just gone down to 9mg today from 10 and will be on 9mg for 30 days and then down to 8 for 30 days and then 7 and so on. I don't know about the weight/dosage ratio thing, I have never seen it mentioned. I think it is worked out in relation to how much cortisone the adrenal gland normally produces naturally, and I think it's about 5mg daily for an adult, possibly regardless of weight and size. But i'm just guessing here. Anyone else have any ideas? Bob, you will find this a good place to get info, reading back over old posts is good too.Thank you all for your replies. I went back up to ten this morning and after a couple of days or so will try nine for a month, then eight, etc. as you have suggested.
In the past, I took my prednisone all in the morning. Found that it took 3 or 4 hours to kick in, so tried taking it about 3 a.m. with a glass of milk. That helped eliminate the "blind spot" Then a neighbor said she took some in the morning and some at night, so I started taking about 2/3 dose in the morning and the other 1/3 at night. Seemed to work pretty well. Then I read a post here that you need to give the body a break so it can take over itself, so I'm going back to all in the morning.
pgr, I think a drop from 20 to 17.5 should work O.K. That's a 12.5% decrease in dosage, which seems more reasonable to my uneducated brain than dropping to 15 mg., a 25% decrease. I went down 25% from 10mg. and am going back up to a 1mg., or about 10% try.
I did a lot of internet searches and got several indications that autoimmune diseases, like PMR, are initiated by viruses and bacteria. I had a bout of what seemed like flu before mine started, even tho I had had a flu shot. My wife and brother-in-law both had the same bug and got a 5-day antibiotic, and they are fine. I didn't go to the doctor.
Look up Dr. Gabe Merkin in Google. He's a proponent of using antibiotics, and says the benefits outweigh the fears of creating resistant bugs. There is are articles that suspect paravirus B19, adenovirus, and parainfluenza virus trigger PMR. Merkin says some doctors treat PMR with long-term antibiotics, such as doxycycline, in additon to prednisone.
Unfortunately, a lot of the sources cannot be downloaded by laymen, and many of the others require a real grounding in medical and biological terminology. However, overall I get the impression that there is little research into the causes of PMR. We will more likely benefit as a side effect from research into related autoimmune diseases such as arthritis.
Thanks again for your help. I'm glad I found such a great source of real-life opinions and suggestions.
Hi Bob...that is very interesting about viruses/bacteria as possible triggers for PMR. About 2-3 weeks before I came down with severe symptoms I had a fever and some aches and pains...then had a flu shot...one week after the flu shot PMR kicked in...that was Sept '06. I started on 30mg Pred (sed rate was 70) with gradual reduction to 10 by Jan and then hit the wall when my dr dropped me to 7.5..just like you! So I started the 1mg decrease every month and, with a little help from ibuprofen to get over the withdrawal symptoms every month, am now down to 2mg with my fingers crossed...still have morning stiffness and fatigue but can deal with that if I can just get off this stuff...good luck to you!
Hi Bob!
I spent about 5 days in Athens, Greece the first week of April, 2005. At the end of the week, I started feeling funny, and when I got back to Sweden, I had a peculiar cough (we call it dry cough in Sweden). After some week of coughing, I went to a doctor. He thought I had some virus and started trying to find out what was the matter with me. Not until June 20 that year I got the final diagnosis - pmr and temporal arthritis (or GCA, which is the same). Meanwhile, they had tested me for everything. I was told finally that I should be glad ihat pmr is an illness that you can get rid of even if they told me it should take at least a year. Now it is over 2 years but I am on the right track, it seems
From 10 mg to 5 mg per day, I tapered 1 mg every month and that was OK. After some hitbacks when trying to go from 5 mg by tapering 1 mg a month, I went back up to 5 during a whole year - I just couldnīt get below. Then I tried to reduce by 0.5 mg every month and that worked. Now i try to go over a bit slower. Next month I will go down to 2.5 but during 1-2 weeks I will take the old dose (3 mg) once or twice a week to make the change more slowly. As you speak about percantages, it is very important to understand that if you go from 3 to 2.5 mg per day you reduce by 17 % and thatīs a lot.
Good luck
Ragnar
Thank you all for the info... I am trying to remember if I had a virus beforeI'm at the same point you are (after a year & a half of downs & ups!). I've been on 9 mg for just over a month, but find that I have stiffness in my shoulders that I didn't have at 10 mg., and that is hampering my work around the farm - I am hestitant to tackle the jobs that require a lot of upper body strength, as I just don't have the energy for them. I'm trying to decide whether to go back to 10 mg, or tough it out.
On the bright side, at least I'm still able to saddle & ride my horse! (More motivated, I think!)
You on your horse, me on my bike Tickety! Would be way to depressed if I