[sandy56]

I have been diagnosed with MG for a month. My PCP wants to put me on a statin (not sure which one) and actonel for osteoporosis. He says I have significant osteopenia and high cholesterol. My NM doc has deferred this to him. I am currently tapering off prednisone and taking 30 - 60 Mg of mestinon 4x a day.

I have put my PCP off until my pred taper is done and I plan to start researching about statin use and MG. Anyone have any experience with either of these classes of drugs?

I am doing so much better and am concerned about an exacerbation of my MG symptoms
Thanks

Sandy

[4-eyes]

Just my opinion, but I would avoid both of those drugs at all costs. Both are potentially nasty with bad side effects.

Since you have time, I would research and try some natural solutions for the cholesterol. Gugu lipids, red yeast rice, dietary changes all can be helpful. Mrs D can probably assist you with these. I've heard statins and MG don't mix well.

As for the osteo meds...ugh...I have pretty strong opinions about them. New studies (as well as old ones) show that they are really good at building bone---thick, chalky, brittle bone. It may look good on scans and x-rays but you've seen what happens when you drop a piece of chalk....shatter city. That's what it does to your bones, too.

There has been a lot of talk about spontaneous femur and hip fractures from women on the osteo drugs. Also, there is a lot of info about what it can do to your jaw even years after stopping the meds. If you have major dental work done, you can have osteonecrosis of the jaw (bone death.) Not a good deal.

Again, there are more natural things you can do to help your bones. Vitamin D3, a lower protein diet, mild resistive exercise, natural hormone replacement, etc can all help to more naturally preserve your bones.

So these are my opinions, as I've never tried either of the drugs, and probably wouldn't if the need arose. I'm sure others will be along with their opinions, and then you can make some decision.

An informed decision is always the BEST decision! Good luck.

[pingpongman]

My neuro-muscular told me "NO STATINS". He has held firm on that belief.
Mike

[southblues]

Before I was diagnosed, I started taking a pravistatin. Within a few weeks, my eyelid started drooping. I stopped taking it and the eye got better. It was two years before I came down with chronic symptoms. My severe symptoms started when I was having a period of extreme personal stress. The stress has been resolved, but I still have the symptoms.

I was able to reduce my cholesterol by changing my diet. When I eat meat, I eat very small servings. We never fry food any more.

I am not going to take a statin drug for any reason. If it caused an eye droop when I was healthy (probably early in the disease process), what would it do now?

[cait24]

Sandy, Have you had your thyroid levels checked? Autoimmune thyroiditis is often found with MG. I have autoimmune Hashimotos hypothyroidism along with MG and the thyroid issues cause many symptoms that aggrevate MG as well as causing osteopenia and high cholesterol. I would ask them to check the thyroid before starting a bunch of other medications.

kathie

[Fortunatos]

Originally Posted by sandy56

"... My PCP wants to put me on a statin...He says I have high cholesterol. My NM doc has deferred this to him. Sandy

Hello Sandy It's a great question. As you can see from the posts, this is a tough nut! I'm going to generalize (and surmise)...

Your neuro has handed this to your PCP. The PCP has all your medical information and will follow you, closely. Deferring is the standard here. Let him tell you first, what he has planned for you, with special attention to what he says about statins and Myasthenia. I would find it hard to believe that your PCP wouldn't check this, but it does happen. With regard to "high" cholesterol, you might ask him to define "high" for you.

Plenty of myasthenics take this drug, successfully, and some do not. Unfortunately, doctors can't predict into which category we will fall. I know, I know, it's the old, "we are all different..." It also boils down to risk-taking which is a very, personal choice, and often, not quite as difficult a decision for seasoned myasthenics who have a good understanding of their symptoms.

Ultimately, this is a decision that you will have to make.

Welcome to the world of "who knows...?"

[sandy56]

Kathie- I did have my thyroid and thyroid antibodies checked and was told everything was fine.

Celeste-I am worried I will have the same reaction you described. I has always reacted strangely to medication. I plan to try herbal alternatives

4-eyes-I have read some of the studies too. Scary stuff.

Fortunatos-My PCP stressed that statins MAY cause problems in the neuromuscular junction. I got the impression that he thinks everyone should be on statins. I plan to do my homework before I start anything

Mike-I am leaning toward that position too

Thanks everyone
Sandy

[pingpongman]

My PCP will NOT have any opinions on my MG. He defers to my neuros for any decision on my MG or any meds he gives me is cleared by neuros.
Mike

[Fortunatos]

Originally Posted by pingpongman

My PCP will NOT have any opinions on my MG. He defers to my neuros for any decision on my MG or any meds he gives me is cleared by neuros.
Mike

Hello Pingpongman... This is the case here. When a neuro "defers" to the PCP, the neuro is saying, "as you wish" giving the PCP the go-ahead. The PCP then takes over the responsibility of monitoring the treatment.

[Heat Intolerant]

I wouldn't focus on a chain of authority and who is deferring to whom unless it made absolute sense to do so (I expect I'd go with a cautious neuro who had to clear meds for example).

Without that, as you mentioned before, it is indeed a decision which someone should make after looking at the research and doing a risk-benefit analysis.

Even without reference to MG, there has been some new research and discussion recently about the relative benefits and risks of statins which is worth skimming. in the following link, there are references to differing results in competing studies:

http://www.nejm.org/doi/full/10.1056/NEJMc1207079