Advice Appreciated - My Statin Story

[starfish]

Hi Everyone! I’m sorry that you have suffered due to statins and I wish you all the best in your recoveries.

In my case, at age 48, I had surgery for recurrent thyroid cancer. I was recovering well and returned to work within 5 weeks. I was active, could walk miles, and enjoyed being a first grade teacher, traveling, scuba diving, and gardening. However, my doctor said I was at risk of stroke or heart attack due to high cholesterol. He said diet and exercise wouldn’t help me, since I was active and not overweight. He gave me a “very mild” statin – Crestor.

Prior to taking Crestor my cholesterol numbers were:
Total cholesterol = 212
Triglycerides = 39
HDL = 91
LDL = 95
CRP = 0.253

I only took Crestor for 3 weeks. Although I stopped Crestor 10 months ago, I continue to have daily intense muscle aches, cramping and burning nerve pain in arms, legs, and back, which worsens with even slight activity. I‘ve been unable to work, drive, or do normal household activities. Sleeping is difficult due to pain.

I’ve seen rheumatologists and several neurologists, but no one knows what to do. I had increased muscle cramping after a Kenalog corticosteroid shot. My three CKs came back slightly elevated, however, my Myelin-Associated Glycoprotein test (MAG) came back severely elevated showing “active demyelination” of my nerves.

Unfortunately, the first 5 months, I only took small doses of CoQ10. I now take CoQ10 - 2000 mg and Acetyl-L-Carnitine - 4500 mg daily (both in split doses), but it hasn’t helped me. For a short time, I tried L-Carnitine - 1500 mg (split doses), but it gave me diarrhea and I still had muscle pain. I’ve taken Alpha-Lipoic Acid – 600 mg, B-12 shots, Benfotiamine- 600 mg, and Whey Protein (briefly). So far nothing helps. Are my doses wrong?

I also developed inflammed shoulder tendons and bursitis and now have a “frozen shoulder”. Physical therapy has improved “some” range of motion, but the daily stretching is so painful to my tendons and knotted muscles. My right biceps and thigh are constantly cramped. I’ve lost most use of my right arm and can only walk a very short distance now.

I was taking 3000 mg aspirin daily, then 2400 mg Ibuprofen, now Darvocet 100 twice daily, but it doesn’t help much. I’m afraid to take anti-seizure meds like Neurontin or Lyrica because of side effects. I don’t know what to do. Any advice would be greatly appreciated.

[harley2ride]

Really sorry to hear about your condition. My situation is a little unique. I took crestor for 30 days, and was first diagnosed with statin myopathy, after numerous tests. Now they say it has gone to Mitochondrial Myopathy. The Coq10 and L-carnatine helped to some degree. Make sure you get good quality coq10 (gel caps), and Aceytl L-Carnatine (gel caps), and start out taking a lesser dose of l-carnatine, and work up over a period of time. Otherwise you will go from constipation to diahrea quite often. I've tried numerous things, and my pain and discomfort has improved greatly by adding wellbutrin and lyrica to my daily pills. I'm taking 100mg wellbutrin daily, and 100mg lyrica daily (take each twice a day, 50mg dose). It made a really big difference for me. My pain had continued to worsen over 2 1/2 years. It's not gone now, but it sure is a heck of a lot better than it was. You need to find a doctor that will do an oxygen exchange test, muscle biopsy, and emg. That should tell them the exact extent of your injury, and give a diagnosis of what it is. But find a good neurologist who believes that statins can cause this type of injury. Otherwise you will be spinning your wheels.

[slacckk]

I an't believe he gave you Crestor with an HDL of 91.

I hope you found a new doctor...

[starfish]

Hi Harley! Thanks so much for your help. I will try the L-Carnitine again, but start at 250 mg. Should I take L-Carnitine along with Acetyl-L-Carnitine daily? Any ideas about how much of each or how often?

My rheumatologist initially diagnosed me with Statin Induced Myopathy, but said it would not last longer than 6 months. I was then referred to different neurologists. One said I probably had Mitochondrial Myopathy and the other one thinks it’s Multiple Sclerosis.

The muscle biopsy sounds scary. What part of your body did they use? Was it painful? How long did it take to recover from the biopsy? I asked the neurologist what the treatment was for Mitochondrial Myopathy. He said it would be most of the same supplements that I’m already taking. How is your Dr. treating your Mitochondrial Myopathy?

What is an oxygen exchange test? Is it a blood test?

I’m so glad to hear that your pain has improved. Have your new meds enabled you to resume normal activities?

[starfish]

Hi Slacckk. Yes, I have a new doctor. I only wish I had known more about cholesterol numbers, statins, and their side effects before I blindly trusted him.

I was so happy about successfully surviving cancer twice and was looking forward to a bright future. Now I can’t believe how disabled I’ve become from the Crestor. I’m trying not to get discouraged, but it’s hard.

Thanks for caring.

[Darrell]

"Should I take L-Carnitine along with Acetyl-L-Carnitine daily?"
No, they're almost the same thing, so you would not take both. Either one works for me.

[starfish]

Hi Darrell. Thanks for the info. I was confused about the difference between L-Carnitine and Acetyl-L-Carnitine. I mistakenly thought one was for weakness and the other was for pain. I’m glad they both work well for you.

[me2]

Hi Starfish,

I read about you having had thyroid cancer. Are you taking synthroid? The reason I ask is that I too have been having problems when I was on Lipitor and I considered taking carnitine, but saw that it can interfer with thyroid medication, so I decided not to take it. I was just thinking that you might want to have your levels monitored just in case.

BTW, Darrell if you read this and you remember my story, I have been off Lipitor for over 2 months now and there has been an improvement. I take 200 of the Coenzyme Q 10, but not everyday. Walking has improved and I am very grateful. Thanks for your help.

Best wishes,
me2

[Darrell]

Glad to hear of your improvement! Thanks for the update.

[harley2ride]

[quote="starfish"]Hi Harley! Thanks so much for your help. I will try the L-Carnitine again, but start at 250 mg. Should I take L-Carnitine along with Acetyl-L-Carnitine daily? Any ideas about how much of each or how often?

My rheumatologist initially diagnosed me with Statin Induced Myopathy, but said it would not last longer than 6 months. I was then referred to different neurologists. One said I probably had Mitochondrial Myopathy and the other one thinks it’s Multiple Sclerosis.

The muscle biopsy sounds scary. What part of your body did they use? Was it painful? How long did it take to recover from the biopsy? I asked the neurologist what the treatment was for Mitochondrial Myopathy. He said it would be most of the same supplements that I’m already taking. How is your Dr. treating your Mitochondrial Myopathy?

What is an oxygen exchange test? Is it a blood test?

I’m so glad to hear that your pain has improved. Have your new meds enabled you to resume normal activities?[/quote]

Hey Starfish. I've had two muscle biopsy's. One in left deltoid bicep, and one in right deltoid bicep. Sometimes they like doing it from a leg muscle. It pretty much depends on the doctor, and where you seem to have the most chronic pain (which in my case, my biceps hurt the most all the time). It was a little painful, and it hurt for a long time, since with this condition, it takes the muscles a heck of a long time to recover. It was probably an inconvience for about 4 months. I was using them withing a few days of the biopsy, just a bit tight and a little pain. The Oxygen exchange test was, they put a mask on your face (hooked up to a machine), and measure your oxygen exchange (oxygen to carbon dioxide) at rest for quite a long period of time. They then put you on a treadmill with this stuff still hooked up, and take the same reading at a few different points. That is how they could tell that my muscles weren't processing fats and sugars, and not getting enough oxygen. The EMG is where they stick needles (kind of like acupuncture), with wires hooked to them, and test your muscles at rest and then with resistance. Not too bad.

My muscles are actually doing pretty good now with the medications I am taking. The last two made most of the difference. I've been taking 2000 mg fish oil (all of these pills are one morning and one evening, unless otherwise specified, with have the dose in the morning, and other half evening), 600mg coq10, 500mg acytl l_carnatine, 1 multi-vitamin (gives me by "B" vitamins plus a few others, 1 baby asprin, 1 5mg dose of NADH (which is one of the newer ones I started on), 100mg wellbutrin (2 x daily)
50mg Lyrica (2 x daily).

I had not noticed a lot of difference with all the first stuff (although it did help enough, that not taking it made me noticably worse), but after starting the NADH, wellbutrin, and lyrica, I really noticed a difference. My pain levels went from 7 - 9 range almost daily, to 3 - 5. I still have rapid muscle fatigue and loss of endurance, but it's really nice to have those pain levels, muscle cramping and spasms, decreased by a bunch. I've only been doing this routine for about 3 weeks.

My diagnosis was Mitochondrial Myopathy, so maby this works good for that. It might also work for Statin Myopathy, but I would most definately check with your doctor first. The Lyrica has some very nasty side effects listed, but that was all with studys of people taking 200mg and up daily. Being as I'm already pretty much screwed, I figured it wasn't that much of a risk to try the Lyrica. So far, after the 3 weeks I've been on it, the only thing I've noticed is improvement. If anything changes there, I'll be sure to post something on this site to let folks know.

I'm less depressed, I have more energy, and about 1/2 the pain and cramping I used to have. It's been this way for three weeks. I've never had this many days feeling good in a row. Only bad part, is I felt so good, I was swinging my granddaughter around, and lifting her up, and running around with her last night, and I'm a little sore today. But still not as sore as what my past normal days were. So I have to learn that just because I'm not hurting as much, doesn't mean that I'm better. I still have to be careful not to overdo it.

By the way, my coq10 and acytl L-Carnitine are all in the same capsule. I found them at vitacost.com. It's saving me about $20.00 a month or more by buying them this way, and so far they are doing great. They also had listed something called MitoCH power, that I showed my Doctor. He told me to go ahead and try them when I run out of my other stuff. The Mitoch will save me about $35 - 40 a month, and reduce the number of pills I take daily (which is 20), to about 10.

[starfish]

Hi Me2. You are correct. Yes, I do take Synthroid. My endocrinologist checks my TSH and free T-4 levels every 2 months because CoQ10, Carnitine, and Alpha Lipoic Acid can alter thyroid levels. My Dr. has slightly modified my Synthroid dose twice so far.

Check with your doctor first, but I don’t think you would have problems taking Carnitine, as long as you increase doses slowly and have your thyroid levels monitored. I never noticed any ill effects from taking the supplements above. I had diarrhea from the L-Carnitine, but I think I started taking too much too soon.

Thanks for your concern. Good luck.

[starfish]

Hi Harley,
Thanks so much for all the info with specific details. I’m so glad that you have had so much relief from your new meds. I hope you continue to improve!