My friend Adele’s account, below, from Facebook. Note that she had high CPK and positive HMGCR antibodies.
May 2017
It’s almost 10 years ago now that my doctor put me on 80 mg of Lipitor, which I took for 4 months. Even after a month or two I noticed my muscles were very week. I attributed it to old age (I was 57 at the time) my follow- up appointment with my pcp was in December, 4 months after I started this poison. My CK which had been in the normal range in August, which is about 24 – 174 shot all the way up to 11,000 and I was very very weak! My pcp was shocked, so he sent me to have a liver biopsy because he thought these were elevated liver enzymes. The results came back that my liver was normal and those doctors said these were probably muscle enzymes in my blood. Someone in our group had said she had gotten results with Dr Phillips at Scripts Mercy Hospital out in San Diego who is a cardiologist, but has been studying statin damage as well . He did a muscle biopsy and strength tests as well. He diagnosed me with necrotizing myopathy due to taking statins. He suggested that I get a very high caliber of CO- Q-10 and fish oil and see if that would improve my muscles. I did this for a few months, but got no results whatsoever!
So someone in this group suggested that I get ahold of Dr. Mammen at the Johns Hopkins Myositis Clinic. So I sent him all my paperwork and test results and asked him if he thought he could help me. It didn’t take long for me to hear back from him and he made an apt for me to come in. I failed to mention that I had also gone to Cleveland Clinic where they also did a bunch of tests and said the only thing they could do was put me on prednisone and methotrexate. I did not want to take these medications because I know they too have side effects! So I finally went to see Dr Mammen and he agreed that I had necrotizing myopathy. Also gave me the HMGCR test and I tested positive for that. He suggested that we start treating me with IVIG infusions of Gammegarde, which are antibodies that stop my muscles from destroying themselves. If this didn’t work, he would add methotrexate and then prednisone if necessary. I started by getting 5 days of injections. I believe it was about 150 grams every month. Well, my CK started coming down immediately, and I felt stronger every day! After maybe 9 months of doing this he cut my dosage down to 90 grams a month and my CK continued to go down.
At this point I actually felt pretty normal. Then he cut it down to 60 grams a month and that’s what I have been getting for many months now. I only have to do this 2 days every month now for 2 1/2 hours each day. My CK seems to have plateaued between 400 and 500 now, which still isn’t normal, but a lot better than 11,000! I feel pretty strong and my muscles don’t hurt unless I walk too long– then my shins and calves ache. Time will tell if I will ee to stop these infusions. I have been getting them for almost 3 1/2 years. I think at some point he’ll try to wean me down to just one infusion every month. I have never had to take methotrexate or prednisone. I am so thankful I found this doctor and this treatment! Without it I would be in a wheelchair living in a rest home!!
(more from Adele)
I’m the patient of Dr. Mammen that was a success story for him! He has treated hundreds of patients with just IVIG, IVIG with prednisone and methotrexate. I opted to try just the IVIG. I have been getting it for about 3 1/2 years now. I’m down to two infusions a month of 30 grams of gammegard. My CK had originally gone up to 11,000 ten years ago after taking Lipitor for 4 short months. I went to a number of doctors and tried different treatments, but nothing helped! This never just goes away on it’s own. As a matter of fact, your muscles get worse every month! I thank God for bringing me to Johns Hopkins where I found Dr. Mammen and a positive treatment for this autoimmune disease caused by Lipitor. My last reading of my CK was 376. My strength has mostly returned, but my muscles do get tired a lot quicker than they used to.
I doubt that I’ll ever be able to quit the infusions, but hope to maybe get down to 30 grams a month, far less than the 250 grams that I started out with over 3 years ago. Unfortunately, Dr. Mammen is not taking any new patients, and s now working for the National Institute of Health, but there are other doctors there that do the same thing. Dr. Mammen is still seeing some of his own patients and monitoring their progress! My experience was even written up in the New England Journal of Medicine about a year ago! Good luck with your treatment. I’d like to hear about your experience and what you have been doing to treat your necrotizing myopathy!
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