From what I have read, he's going to the right type of specialist. Just make sure the doctor is certified in both Internal medicine and Rheumatology. Rheumatology is a sub-specialty of Internal Medicine.

I was diagnosed with polymyalgia-rheumatica 5 years ago. I suffered for about 5 months before my GP doc sent me to a Rheumatologist who diagnosed and still treats me. In the beginning, I was prescribed 20 mgs of Prednisone twice daily. Within 3 days I was almost pain free. After 10 days the dosage was gradually reduced to 10 mgs twice daily where it stayed for about a month. Still virtually pain free, the doasge was further reduced to 5 mgs twice daily. After some time, it was further reduced. I now still take a maintenance dose of just 5mgs daily of Cortef another corticosteriod that my doctor says is a more natural form and less likely to cause the side effects that prednisone can cause. It is said that often P R can last for several years, or in some people never goes away. I really believe that my round with it was mild to begin with and is now gone. I do have some occassional days of mild stiffness and general aching in arms, neck and upper back, but I have other physical problems that I attribute those times to. My doctor is not so sure. He keeps me on the Cortef, saying that it is helpful and much less harmful than the NSAIDS that are commonly prescribed for the minor aches and pains of Osteo Arthritis, which I also have and it is keeping the Polymylgia at bay.

I'm sure the Rheumatologist will be able to help your husband get the relief that he needs from this little understood and hard to diagnose disease. Rest and the right meds are the key right now

I have been diagnosed but truthfully there are no real tests, they just rul out everything else. I have been on a light weight pain killer for several months now and it has changed my life. I was also just prescribed Neurotin and I believe that it has helped me more than any thing else. I take the Gabapenten (Neurotin) at night and I have been having issues with being sleepy so I suspect that is the culprit. The pain killer, I take first thing in the morning every morning and when I go to bed at night..The important thing is not to let the pain get ahead of the drug.

It is apparently a debilitating condition. The steriods have given him a lot of relief, but we are wondering how long one can be on them.

ruthieg...are you seeing a Rheumatologist? They are the only doctors who can properly diagnose this syndrome.

It is not usually treated with anti-seizure or pain medications.

My mother got it when she was 63 and had it for about 3 years. Unfortunately, the steroids she was given caused some heart and lung damage and she ended up with congestive heart failure. I think Gazania's doctor did a good job of weaning her down from higher doses of steroids to avoid possible side effects. I wish my mother's doctor had not kept her on the initial high dose for so long, as she may have avoided the resulting complications.

I have had it for 3 and 1/2 years.

My GP gave me 50 mgs for 7 days. This was for diagnostic purposes. He does not believe in specialists - says he doesn't make mistakes.

After the 6th tablet my heart began to beat faster than I could count. My son called for an ambulance and I went to the hospital. They worked hard to get it down. The rest of my family were notified and came. We were all told that it could lead to a stroke. The cardiac team was called in twice during the night. Finally they got it down and I was sent home the next day , put on warfarin, and a Beta blocker. It became impossible for me to walk again. The pain was extremely bad. I finally got to a rheumatologist and was diagnosed, but he feels that is not the complete diagnosis, but hasn't been able to find something else. At the same time, I developed very itchy scalp and nodules down the complete length of my spine - very itchy- don't know if there is a connection or not.

The rheumatologist put me on 20 mg of prednisone and the pain cleared exremely fast. Gradually he lowered it to 15 and it all came back. He put it back to 20 and slowly reduced it a little each month until I got down to 2 mg, daily, then it flared again. He has kept it at 5 mg ever since. I don't have another appointment with him until next April, unless it flares again. Apparently the side efffects are not too bad at 5 mg. I have had bone tests and I was on medication weekly to keep the calcium in the bones, and take 3,000 units of tums daily for the calcium content The tests for the bones have all come out very good. My problem started with food tasting strangley and got to the point where I could hardly eat. As soon as I was on the prednisone, my taste came back and I gained 32 pounds. Most people gain and it is hard to lose. On this lower dosage I have been able to lose 44 pounds. I feel better now than I have felt for several years. Prednisone is a drug that no one wants to take because of possible bone loss, weight gain, etc. but it is a miracle drug for relieving the debilitating symptoms.

Are you aware of the forum that the Arthritis Society has? There is a lot of helpful info there.

Wishing you both all the best.

Here is a link that might be useful: This might help

I'm glad your s/o is going to a rheumatologist. My sil wouldn't go to a rheumatologist because she swore by her family Dr. Her Dr. kept her on steroids, etc. without regular blood tests. Now she has been diagnosed with severe liver damage.