STEVE, polymyositis

In late april of 1997 I was diagnosed with polymyositis. My CPK level was 7,956.

It all started in mid to late january 97 with a pain in the calf of my right leg; then aches and pains with burning muscles that got progressively worse with each passing week. Swallowing became very difficult. It was like I had the worst case of the flu ever, multiplied by a thousand.

Finally I went to my GP doctor. I was tested for hepatitis, liver disease, weeks of those tests with nothing confirmed. Then I saw his associate in his absence and she wanted me to have a special test (CPK). Meanwhile a friend of mine had a bad bacterial infection that was going around and she had taken Zithromax (azithromycin) to get rid of it. I thought that was probably what I had and was sure it would help me, because my symptons were the same, only more severe. So I made a deal with the doctor - I'd go immediately for the CPK test if she would give me a prescription for Zithromax. She agreed to do that, then stated it wouldn't help. That's when I had a CPK count of 7,956.

But the Zithromax did help me quite a bit. The next day I was able to lift my arms, etc.

The next step was to go to a rheumatologist, which took a couple of weeks to get in to this "specialist". By the time he got me started on the worthless prednisone, 60mg per day, my CPK count was down to around 5,000 with his first blood test. I hadn't put 2+2 together at this point. Not until a week or two later when I started my own chart.

I started begging my doctor for Zithromax, as each time I took it my symptoms eased, and why did my CPK go down instead of up before I started on any prednisone or other medication? I was up to 80mg per day of prednisone and wasn't getting any better so I changed doctors. I had already had a muscle biopsy and a "EMG" (that was quite the barbaric torture test). Then I needed a liver biopsy before I could go on methotrexate. And, why not give me 1000 mg of prednisone a day for three days, through an IV while I'm in the hospital? What a nightmare that whole deal was. Prednisone is to reduce swelling, which I had no evidence of with the muscle biopsy. But the first rheumatologist made some excuses to satisfy himself on that one. Funny how you find these things out after it's too late. Anyway, I went progressively down on prednisone and up on methotrexate.

All of this time I was taking a dose of Zithromax (the five day packet, 2 on day one - one every day thereafter - 250mg of azithromycin). Each time I took Zithromax my symptoms improved. Mainly I've been on 17.5 mg of methotrexate - by June/July 98 my CPK was down to 450-500, still high in my book. I talked with a newly acquired gp doctor friend about the Zithromax and he suggested why not try 600 mg of Zithromax per week, as it would stay with you all week that way. So in August, I started that and each month I've felt better and better and the CPK went steadily down with each monthly test. My CPK is now at 154, and I have dropped 2.5 mg of methotrexate last week. So now I am on 15mg of methotrexate, zero -0- prednisone and 600mg Zithromax. I would like to get completely off of methotrexate.

I know the antibotic has played a key role in my recovery. I can only wonder what would have happened if I had started immediately on the 600 mg/per wk of Zithromax in the beginning.

I was diagnosed and tested positive with polymyositis/anti-SRP (signal recognition particle) whatever that is. My rheumatologist said it was the worst kind and didn't give me long to live, but I'm back to about 95% and feel like a million. By first rheumatologist said I should find a different occupation because I would never be able to perform my kind of work again (swimming pool contractor - very physically demanding work). At the time I was inclined to believe him with all of the aches, weakness and burning muscles. I couldn't stand or walk 20 feet before I would have to sit down due to the weakness and pain. I couldn't lift my arms more than shoulder height. Getting into a car I would have to lift each leg, one at a time, with my weakened arms. It was terrible.

But now I could whip the world. Amen.

Update on my polymyositis - 10 years and counting - January 2007

Amazingly, I am still doing very well. I've had a personal tragedy. I lost my wife after a seven year battle with cancer on August 15, 2005. I have been struggling with the grieving and 'getting back to life' after her death. I am finally in an emotional state of mind that I feel I can respond to the many emails I have received asking for support in regard to Polymyositis. In doing this, I realized my profile is outdated and feel it is time to update it so others suffering from the same disease can have the most current information.

It amazes me that through my emotional and physical struggles with life, with the stress that the polymyositis hasn't flared up again. I feel great, still work a hard, physical job and was even told once I looked great! LOL I credit the Zithromax, which I still take 600 mg one tablet per week faithfully, for my health. I am still on 3 mg of liquid injections of Methotrexate. My doctor wanted me to go on Imuran because my liver counts were somewhat high over a period of years. I said, 'didn't we discuss injections of Methotrexate if my liver counts were getting high?' Little beknown to her, I was back to drinking beer which probably didn't help my liver count. Now I really don't know if Methotrexate helps me or not, but I am not going to change my routine and take the chance of slipping out of "remission". If it's not broke, don't fix it!! Knock on wood, I guess I would consider myself very, very lucky to have survived this disease/condition - coming up on ten years now. Whatever it is that is working, I hope it continues to work for another 20 years and I will be giving you another update at that time! hahaha I do feel great for my age and feel extremely fortunate to have survived and recovered from this dreadful, sometimes fatal, disease.

I feel good!

Steve Heath. You can reach me at scheath1@msn.com


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