Polymyalgia Rheumatica
First hand information.
By Sue Noon
 
 

I write this little article in the hopes I can offer some help and perhaps answer some questions on polymyalgia rheumatica (PMR.)

I am 57 years old and have had polymyalgia rheumatica (PMR) for two and a half years. The disease has sometimes been referred to as "the mystery disease" because it appears so suddenly, seemingly without previous symptoms. (I literally "awoke" with it one morning and could not figure out what had happened to me!) It is a disease which affects muscle and connective tissue in the body, can be extremely painful and includes much muscle stiffness in those muscles affected. I have read all possible about it and no one knows the cause of it (one doctor told me researchers are chasing a virus and, more recently, because of findings related to rhuematoid arthritis, infection of some sort is being considered with some antibiotic treatment now being given.) The " down" side of experiencing the disease is its pain and discomfort; the "up" side is that (in estimates I have heard or read) as many as 33% of people affected have the disease disappear in a two to five year period.

Diagnosis of my condition, and continual monitoring, included, and still include, two blood tests--one which measures the sed rate; the other is called the c-reactive protein test and each test indicates inflammation levels in the body.

Everybody's body is different and therefore muscles affected, drug therapy, and time before possible remission differs with everyone. I had a" textbook normal" case of the disease with muscles first affected in my legs (thighs and hamstrings), hips and pelvic girdle and shoulders. At the beginning I was unable to do even such simple tasks as tying shoestrings or moving my arms much beyond my sides. I walked with what I called my " Frankenstein walk."

I was treated the first several months with NSEDS (non-steroidal drugs) and at first responded well and had a high level of relief from the pain, if not the stiffness. (Some physical therapy when I was doing much better helped greatly in improving ROM--Range of Motion--in using affected muscles.) There are some forty drugs which can be used in treatment of this disease and, over time and for various reasons, I was on about five different types. I think we all know steroids can be a double-edged sword. One steroidal drug in the prednisone family, much stronger than prednisone, eventually gave way to a winning formula for ME: prednisone taken in much smaller doses over the course of a day. From the time my doctor put me on this regimen my pain disappeared as did most stiffness AND I began to be able to work at getting my dose down. (I now range from using about twelve and a half mgs to 10 mgs in a day, increasing from the lower number only if my rates become elevated and if pain symptoms recur. I am HOPEFUL in time of reducing the mgs even more,though am personally reconciled to the amount I am taking with the quality of life it has given me IF I don't end up in the lucky one third!) Meanwhile, I am constantly monitored by my doctor who sees me monthly, checks my blood and watches closely for adverse effects. Mostly I feel well and am very optimistic.

If you are a PMR sufferer you will find many of your own solutions, but I think I am able to offer some thoughts and practical suggestions that I feel have proved helpfulin living with this disease:

1. Choose a doctor in whom you believe and with whom you have a good rapport.

2. Be sure you are monitored closely.

3. Realize there are numerous medications available--all of which have some adverse effects, as does all medication we take--and watch for types and regimen that help you personally.

4. Get adequate rest.

5. If you are improving, ROM exercises and exercises such as walking, riding a stationary bike and even water therapy can help.

6. Heat and topical salves for early stages and painful periods are useful (I have found.)

7. The American Arthritis Society with it's magazine has useful arti- cles on new treatments and tips for comfort. (PMR is an auto- immune disease that is broadly under the arthritis umbrella of dis- eases.)

8. In the early stages, while you are finding which combinations of medications and lifestyle work for you, try slippers and loafers for shoes, in you can't lace up shoes, clothing that is free and easy to wear in various ways such as shirts and/or blouses that button in the front, etc. High chairs and furniture and sturdy ones are easiest on your body, a pillow under your car seat, changing positions and swinging your legs out together from a car are all things you would probably discover to do to help you feel more comfortable and to move more easily.

9. If you are put on prednisone, or other steroids, and get bruising on your arms (which is one possible side affect), 25,000 I.U. s of Vit- amin A might clear them up. (This worked for me in about one month.)

I hope these comments and suggestions are useful in your personal quest to have optimum health while living with PMR. It can be lived with in good comfort once one discovers the things that most help on an individual basis, AND there's always the hope (and reality) that one third of the people go into a permanent remission from the disease! 


I'm always eager to hear from and talk to others on this and other subjects. Click Here to email me.

For a few words about natural anti inflamitories from Sue's crazy son, Click Here. 
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