A mysterious illness caused this writer agony | members only

A mysterious illness caused this writer agony | members only


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A TRICKY PUZZLE Even though PMR is relatively common — it affects 50 per 100,000 in people age 50 and older,  and it’s even more common in those over 70 — it can be difficult to diagnose


because there is no definitive test. “When presented with these symptoms, you must do a workup for any kind of inflammatory disease, lupus, RA [rheumatoid arthritis], gout. Also, look at


where the pain is originating. If it’s wrists, fingers or ankles, it’s not PMR,” Gordon says. The other issue is that the pain comes from the muscles, not the joints, and many patients can’t


tell the difference. Therefore, they can’t describe their symptoms in enough detail to give doctors the necessary clues. In my case, since I thought the pain was due to my arthritis, I went


straight to the orthopedist. There is no specific blood test for this disease. My heightened c-reactive protein and erythrocyte sedimentation rates only showed inflammation, but not what is


causing it. Now we must figure that out. To try to understand more about my condition, I call Eric L. Matteson, M.D., a rheumatologist and epidemiologist with the Mayo Clinic College of


Medicine in Rochester, Minnesota, who has done a lot of research on PMR. “It's a very tricky diagnosis. Even your family doctor and internist often get fooled by it, although


they're more tuned into it than surgeons, and your orthopedist is a surgeon fundamentally,” he explains. He says that there are other diseases that mimic PMR. There are also cancers


that can mimic it, such as non-Hodgkin's lymphoma. In my bloodwork, Gordon checked my white blood cell count. It was fine, which thankfully ruled out cancer. FINALLY, A LIKELY DIAGNOSIS


Gordon says one way to help recognize the condition is to put patients on prednisone, a corticosteroid which helps reduce the body’s immune reaction by blocking inflammatory response. She


explains: “Other inflammatory arthritis diseases require much higher doses of prednisone initially and then require other medications to control the disease., whereas PMR only needs the


prednisone 20 mg or less and is tapered off.” “While many conditions, especially inflammatory ones such as rheumatoid arthritis and a host of others, respond to prednisone at least for a


time, experts studying the disease consider the response helpful but not diagnostic. Therefore, keeping track of your symptoms is vital for you and your doctor,” Matteson says. Matteson also


confirms my suspicion that physical therapy was making the pain worse, because I was exercising with already inflamed muscles that needed rest. Instead, I do very light stretching in the


morning and listen to my body if anything starts to feel painful. Gordon prescribes the drug at 20 mgs, saying I should see a change in a day or so. Regrettably, the next two days only bring


a little relief. On the third morning, however, I am up and out of bed before I realize I have done it…without pain. None. Zero. Zip. I could dance a jig with joy. She recommends I go see a


rheumatologist, Bret Sohn, M.D., in Stamford, Connecticut, to manage my case. At my appointment with him, he is pleased with my progress. He tells me to continue taking the 20 mg dose for


two weeks and then check in again. REMAINING VIGILANT Sohn explains PMR is more prevalent in people over the age of 50 because our immune systems change as we age. “The regulatory cells that


keep our immune systems in check don’t seem to work as well. Overactive immune reactions to stressors such as infections, environmental changes, or even vaccines could trigger the initial


inflammatory insult.” Also, that the disease can be different from person to person. “Some can be off steroids in three months. In others, it can take years. I try to give everyone a ‘try’


at getting them off steroids at three months, but many times, we need to taper slower,” he says. So far, I remain pain-free, and under Sohn’s guidance, I have started to wean off prednisone.


He explains that I must come off slowly to make sure the inflammation doesn’t kick up again, so I decrease by 2.5 mgs every two weeks. By August, I take a walk without having to stop every


10 steps to shake out my knees. Score one for me! He warns me that if the pain starts up again in a meaningful way, I should call him, but to go to the emergency room immediately if I start


having vision troubles or bad headaches. Once off steroids, relapses can happen as frequently as 25 to 30 percent of the time, Sohn says. But flare-ups happen most frequently in the first


month a patient has gone off steroids. Over the ensuing weeks, I manage to hold steady. I have the occasional aches and pains, but they do not last long and react well to some basic Tylenol.


(I also stare at the offending body part and warn it: “Don’t you even dare.”) In September, I returned to my aqua aerobics class, which is not only good exercise but also light on the


muscles and joints.