My Statin Story Update

[gotts1936]

It has been almost three years since I stopped taking Lovastatin. The constant aching in my legs stopped upon ceasing to use Lovastatin, but the muscle in my legs have not stopped hurting. It is still painful to sit down or get up from a chair, get in an out of a vehicle or go shopping. When I am shopping I must use the grocery cart to help stop the aching. My leg muscles, particularly in my left leg, appear to have almost wasted away. I take 400 mg of CoQ-10 and 500 mg of L-carnitine a day. I know, I know, I should take more a day, but all that does is mask the problem and it is expensive. Apparently, once damaged, the mitochrondra pathway never repairs itself. Oh, I was on 40 mg of Lovastatin for 9 months before my doctor said, " Gee, maybe your having a statin drug reaction. Stop taking the statin drug ". Than, a month later, he wanted to try another statin drug and I refused.

Gotts

[peter s]

Sorry to hear of your difficulties. How long were you on the drug before you noticed problems?

[gotts1936]

I had problems within six weeks. It started with aching in both my legs even while I was sitting down watching TV. Also, I started to wake up at night and my legs ached so much I had to change positions which helped a little.
Gotts

[peter s]

It continues to amaze me, as someone new to the wonderful world of statins, that there is such a huge gap between patient experience and medical practice. I saw that to some extent with psych meds but nothing like this. Even assuming the people who post here are a small minority and that most people tolerate statins fine (a proposition I doubt because it seems apparent to me the clinical trials understate the percentage of side effects by quite a bit), there still should be acknowledgement that a significant group of people does in fact have very significant problems. That acknowledgement undoubtedly will have to come one day, but it is almost as if people -- even well intentioned ones -- have blinders on.

Even today, as I saw a new cardiologist, he predictably told me he thought I should go back on a statin and that with proper dosing they were almost certainly safe. I didn't debate, what would be the point, I just explained that I had a different view of the world but that I would be happy to consider an ARB for blood pressure.

I hope you get some relief from your symptoms, somehow. It isn't fair or right to follow the advice of one's physician and end up in constant pain and I truly empathize (related experiences with psych drugs, etc.). As I posted elswhere, I am so grateful to the knowledgeable and generous folks here whose wisdom gave me the insight and just as importantly the confidence to stop statins after only seven weeks, presumably not a long enough time to have lasting consequences. This is a great group of impressive people. Peter

[gotts1936]

Peter s,

Please excuse me, but I responded to you by opening a new post. Check Statin Drug. Sorry!

Gotts

[Cat Mom2]

My problems on statin drugs started within 2 week of starting them, the horriable knee pain and continued the whole time I was on them. I do think that now my doctor has given up on trying to get me to try another one. My last cholesterol check pleased him and I did it through diet, not drugs.. When I found out my results, I knew why I had been feeling so bad and told them it was TO low for me and I was going right out and buy a bucket of fried chicken and a big chocolate cake.

I have a friend in another state that has taken every drug they have given him without even knowing what he was taking it for and he was continueing to feel worse and worse and could hardly walk. His back was killing him and he could hardly breathe. I got a list of the drugs he was taking and looked them up for him and mailed him print outs on what I found on the side effects. I convienced him to stop the statin for a trial period, take C0Q 10 and L-Carnitine, his back pain has let up a lot and he can breathe better now. He told his doctor and the doctor told him to also add Omega 3 to that. He had recently retired and was seeing how fast his ability to do things and his health was declining.

I know another man in Atlanta on statins that has suffered with TGA. I had a long discussion with him about statin side effects and suggested he do trial period off of them and see how he felt off of them but he decided he had to talk to this doctor about it first. Naturally, his doctor told him statin drugs didn't cause his TGA or his lack of energy and to keep taking them so he agreed to stay on them until or unless he had another TGA.

I think someday, doctors are going to wake up and realize how much harm they have done by not listening to their patients or educating themselves... but not before the damage has been done to many! I have been off of them almost 3 years and am still suffering with tendonitis in my shoulder, I doubt it will never be the same again.

If the numbers suffering from the side effects are so small, how come I keep finding so many people who are suffering with the same side effects and all are on statin drugs? I have learned to reconize the signs in people and 99% of the time when I ask them if they are on a statin drugs, they answer "YES!".....

[gotts1936]

Cat Mom2,
I agree with you. I have a friend who fought in the Viet Nam war. His legs are almost useless. He blames it on Agent Orange, but he has been taking a statin drug , 80 mg, for about 15 years. I would tell him to stop taking the statin drug, but he has heart problems. The VA does not seem to be aware of statin side effects.
Gotts