My mom has polymyalgia rheumatica for the last 3 years and is on predisone. The side effects bother her at times. Every time the doc tries to get her off of it, the sed rate usually goes back up. I was under the impression it is an autoimmune condition causing dangerous levels of blood inflammation. I was wondering if anyone on this board has any information on what causes this or if there is anything she can do that would help this condition and maybe allow her to get off predisone. I will appreciate any advice since this seems to be a mystery as to why she got it(no family history) and there doesn't seem to be a cure.
Megherc
07-24-2002, 06:06 PM
If nobody knows, perhaps I am mistaken that it is an immune problem and am on the wrong board? I'll give the arthirtis board a try, since it seems to effect her abilities to move.
TiKi
07-24-2002, 07:35 PM
I have had "PMR", for nearly 2 years. Your post seems to be correct ,to me.The treatment and diagnosis of your mother's symptoms , unfortunately is the mystery of this disease. I was always healthy, untill the onset of this. Am down to 4 mg, ot Pregnazone, having bad days, good days..each day is different. It has to "play out it's term".This depends upon the individual. If I can help more, let me know. My sympathies to your mom.
Megherc
07-24-2002, 08:41 PM
Thankyou so much for your reply. She was healthy too. I hope they find something that will cure it. My sympathy to you as well...I can't figure out what is worse, the condition or the treatment.
TiKi
07-25-2002, 05:28 PM
Hi, Unfortunately there is no cure, was discovered in 1957- 1 in 200 women over the age of 50 get it.
In short , the body manufactors an enzyme that enables the shoulder & hip joints move without pain For some unknown reason, the body stops supplying this enzyme. Then pain sets in with any movement, strenght leaves the muscles, ( I was so bad, I could not even comb my own hair) In short..it has to run its course...the main thing is # 1 deal with Function # 2 Deal with the Pain, ( the hardest, requiring medication, too)
Then, when the Pregnazone taper down, to zero...Doc. said that, it takes a year for it to vacate your system. Hopefully, this info, will help in more understanding. May be in the genes, so Luck, to you.
TiKi
07-25-2002, 07:55 PM
Hi, again...Try this site...it is wonderfully explanitory, so true.
Hope you can get it ?
Hope it helps you.
http://www.mayoclinic.com/findinformation/conditioncenters/invoke.cfm?objectid=DBE6E063-1603-4EB6-8AC38703D6C8FC18
Megherc
07-26-2002, 03:31 PM
Tiki, thankyou so much for the link...I am going to print out the information for my mom! She is convinced she will not recover, since it struck her late at 74 years of age and she has had it already for 3 years. Now, every time her sed rate stays low for awhile, the doc tries to take her off, only he makes her take it one day, skip one, etc. Then the rate goes up. I wonder if having full dose, then skipping a day is the right way...why not lowering dose gradually but taking each day? Seems this method has not been successful. Has anyone here had a successful taper, was it a different method than he is trying? Plus, although they tell her she can take it once a day, she is afraid of it and divides the dose daily..I think this is getting her body used to medication too often?
Also, her doctor is a internal medicine man and I wonder if she should be seeing a rheumatoligist instead? She kind of acts like he's the only good doctor around or something! This whole time I have been telling her to get a second input, but she won't!
The genetic theory would seem possible since it is so mysterious, but nobody else in her family has this. I sure hope it doesn't get passed down to me or my daughter! I read weight-bearing exercise and some things like fish and vitamin e oils help inflammatory conditions (I have always done both), but she won't do one thing unless her doctor says it works...of course, most doctors say nothing will help but meds. What would a fish oil cap and vitamin e once a day hurt anyway? I'm not talking mega-doses or strange herbs here...just simple things. She has had this condition past the usual period you mentioned of 1-2 years, so you'd think she'd try something anyway!
Thanks again; I appreciate any and all info I can get on the subject!
TiKi
08-02-2002, 06:20 PM
Hi, like your mother, I fell prey to PMR, in 2000,suffered mightily, untill Diagnosis , 8/01.My internal med. Doc..started me @ 20 mg .of Pregnazone..I am now @ 3mg. it is not easy!I seem to have a problem , posting, to you.. I also do the Fish Oil,Vit.E, Flax oil..a few others, to offset the effects of Pregnazone. So..this is my 2nd attempt to answer, your post. hope it makes it...I would like to help, however I could, this is a Miserable disease.
Off-board contact info is not permitted.
[This message has been edited by moderator1 (edited 08-06-2002).]
Jay Tor
08-02-2002, 06:56 PM
Here's some more information you can look up.
http://www.nlm.nih.gov/medlineplus/polymyalgiarheumatica.html
It's from the National Institutes of Health, so it's pretty reliable. From here, you can link to clinical trials which are a very good way of finding out what the current 'gold standard' therapy is and which new therapies are being studied.
The most common meds for this condition are immune-suppressants. After prednisone the next most popular med is methotrexate, also an immune suppressant.
http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202356.html
TiKi
08-02-2002, 10:35 PM
Hi,
These posts were my first, so forgive this P.S.
I ment to tell you. I will be 73 in September, and I am relating to your Mother. My Daughter will be 42, this year, and it is hard for her to relate to this problem. When I was coming down with this, and did not know what was wrong with me...I am sure ,she was fustrated. (couldn,t even lift the baby grandchildren) Your mother and I are walking in the same shoes..and when I came down with this, I had no-one to relate to. I am willing to help , all that I can.
[This message has been edited by moderator1 (edited 08-06-2002).]