[Teri]

AVOID STATINS; ARE CONTRA INDICATED WITH MG!. Despite providing a current list of my medications to my Neuro Muscular MG Doc, she and no one else noticed when I was put on Crestor. Less than a year later I experienced crippling “frozen shoulder” that traveled down my arm, back and chest. 2 months after that experienced horrific next to the bone charley horse cramping from my hip to foot. I could not walk for a month. Both issues were 24×7 pain that no treatment or med lessened. When I reached out to my MG doc she scribed some labs which came back showing the statin was causing the issues. 3 days after going off the statin I could sit down and the pain noticeably decreased. A month later I could walk again. 3 years later I do not yet have full function of that arm and the affected leg is still affected; sore muscles that never heal but tolerable pain. Zetia is a non statin that decreases cholesterol without the horrible side effects for those with MG. Unfortunately, I have learned I must test and research everything my doctors scribe, as they are often wrong and I’ve caught similar many, many times.

[Teri]

I am sorry that you are experience such. I am not sure what a “high does of IVIG” means, nor if/how it impacts you, ie. are these symptoms during/after IVIG? At any rate, I love my NeuroMuscular because she is leading edge in research and her treatment for me is the exact opposite and very successful. High doses of Mestinon can have bad side effects and her research indicates that low doses are more effective in that they work on the body more similar to a homeopathic action. I am on 30 mg 4 x day and it has worked wonders for me without side effects. I am on IVIG for CVID and at the highest level I can be on for my weight, as IVIG is by weight as well as by the blood labs. So I get 40 gr Gammagard IVIG once every 2 weeks which restores my most of my IGX levels to within the normal range with the exception of IGA, which is still quite low. While my weight would allow an increase in the dosing, my labs do not in that my IGG is just a bit over the top of the normal range. So many factors must be reviewed in my opinion. My Doctor is Charlatha Nagar out of the Chicago & Glenview area and she is a presenter requested by the MG Assoc to present in their webinars, so qualified and vetted by them. Hope this helps.