Polymyalgia Rheumatica: A misunderstood but common condition.

      In the summer of 2008, as a veteran (victim?) of 33 years of medical practice, I was feeling ready to retire. I was planning to enter the world of retirees at the end of the year. But in July of that year I began getting some strange symptoms of painful knots developing over my scalp. The first of these nodules was located on my left temple and itched. But it was also sore to the touch or when compressed. At first I thought it was an insect bite because I know when we apply insect repellent we don't always apply it so close to the eyes. I reasoned that a mosquito might have found me there. But then I got another such nodule on the right side. I decided to seek out my internist. She didn't know what these were but when I mentioned the possibility of temporal arteritis, though she clearly doubted it, she ordered the confirming blood test, called a sedimentation rate. This is a non specific test but if abnormally elevated in the presence of the correct symptom complex, it makes the diagnosis of this autoimmune condition, one of a group of disorders called vasculitis, or inflammation of blood vessels. Well, at this early stage of the disease, the sed rate was normal. So we both pooh poohed my worries and I went home. But over the next month, these tender nodules began to appear all over my scalp. It became hard to put my head on the pillow while trying to avoid pressure on these nodules. Finally I decided I better take my symptom constellation to a rheumatologist in our clinic. He really didn't buy this as temporal arteritis either.
      I still ask myself why neither of these doctors thought that is what I had. The textbook description of the symptoms of temporal arteritis includes many things among them headaches, fatigue, fever, etc, but one of the classic symptoms is painful swellings over the scalp. So I don't know why these doctors had to be convinced. Maybe because I let them know what I thought I had and since I was a doctor, they had to stand defensively. I don't know ----.
     Anyway, the rheumatologist did order the sed rate and now a month later it was elevated to 3 times normal. The doctor called me back and immediately started me on 60 mgm of prednisone a day. There is a risk of blindness or stroke in temporal arteritis because this inflammation can block the blood vessel not letting oxygen get through to cause these severe complications. That is why treatment is done with such high doses of prednisone. I later had a biopsy of one of these temporal arteries and it confirmed the diagnosis. Usually this disease is self limited and eventually under the cover of the prednisone treatments goes away. The prednisone is weaned slowly down and then stopped usually over about 1 to 1 1/2 years. I was able to wean it down, but on one occasion with a return of the symptoms a little bit, I had to increase the dose back up a little. By February, 2010 I was able to get off the prednisone.
     But now a new problem raised its head. I began to get muscle pains. At the time I was changing my cholesterol medication and both I and my internist knew that those drugs could cause muscle pains. I mistakenly attributed the pains to that change in cholesterol meds. Also at that time we took our trip to Moldova and Eastern Europe. I suffered through that trip, sometimes almost unable to walk due to pains in the hips and back. Now there is a constellation of symptoms called polymyalgia rheumatica which often can be associated with temporal arteritis. The muscles hurt because there is inflammation in the small blood vessels going to the muscles, another form of vasculitis. I knew that this could be associated with temporal arteritis but I had never had these symptoms as a part of my symptom complex. Well when I got back from Moldova, I contacted the rheumatologist, we rechecked the sedimentation rate and it was back up a little bit. So apparently the very low doses of prednisone as I weaned off of it had held this disorder in check, and now my vasculitis was manifesting itself in this way only after stopping the prednisone completely. Well, the good part is that such high doses of prednisone are not required to treat this disorder and so I was able to get good relief by going just back to 10 mgm per day -- a dose that I could easily tolerate and which didn't mess up my sugar control like the 60 mgm did. I have now been slowly weaning down the prednisone over the ensuing year. (Usually like temporal arteritis, polymyalgia rheumatica take about 1 to 1 1/2 years to go away.) At a recent visit about 3 weeks ago, my rheumatologist and I decided since I had been on only 1 mgm prednisone for about 4 months without any symptoms, that I could try going off the drug which I did. Well, guess what. Within a week, my muscles were aching again. I thought to give it some time to see if this was just from working in the garden too much. (The symptoms are somewhat non specific, so sometimes it is difficult to tell them from just general achiness that we all have as we get older.) Now it has been 3 weeks and the aching is getting worse, is interfering with sleep, and is keeping me from doing the things I like to do, like my water aerobics, and my gardening. Today I put a call back in to my rheumatologist and I know I will have to go back on prednisone, probably at about 4 mgm or so and then wean down. What a bummer!

     Polymyalgia rheumatica (PMR) is confused with a number of other myalgias (muscle pains). First there is fibromyalgia which is far more common, though PMR is not uncommon. Fibromyalgia is somewhat of a mystery in cause, but it is thought to have to do with the pain nerve fibers leading from muscles which get into a habit of sending pain messages for no particular reason. Unlike PMR, there is nothing visibly or even microscopically seen to be wrong with the muscles or with the nerves. The cause of fibromyalgia is deduced more from the types of medications that helps it -- meds that are used to treat seizures, or nerve pain. There is another form of myalgia (pain in muscle) which is associated with inflammation in the muscle itself, not in the blood vessels like PMR. This is also an autoimmune disorder but the treatment is different, usually requiring medications that are used to treat rheumatoid arthritis. All of these muscle disorders and pain syndromes have one thing in common. The exact underlying cause is not known.
     I will have to let you know, but it looks like I will have to get back on prednisone. My visits to my doctors, and my encounter with the medical profession from the patient side of the desk continues.