Newbie here

[TXBill]

I'm a 40 year old male diebetic. I had a heart attack on January 31st of 2004 and have been on 80 mg Lipitor and 145 mg TriCor ever since. In Jauary of 2006 my legs started swelling and i was having trouble breathing. I went into the hospital and was diagnosed with CHF, and since then my stamina and my muscles have deteriorated rapidly.

I have severe foot, ankle, and calf cramps in the mornings. I am now to the point where i can hardly walk at all. I thought at first it was just affecting my legs (it feels like i have lost LOTS of muscle in my legs) but i have a hard time with the buttons on my shirt, pulling my socks on, or buttoning my slacks. I can't even trim my fingernails myself, i don't have the strength in my fingers to operate the clippers!

I stopped taking the Lipitor and TriCor about 5 days ago and started on the Co Q 10 last night. I was hoping that I would have a rapid recovery or at least some noticeable difference, but nothing so far. Like others here, I hope I can get back to normal.

Several people have suggested I start using a cane to walk but i am resistant to that so far at least. I'm wondering if that will help me with balance.

The only shopping i can do these days is at Walmart with the help of their little electric carts. I don't know what I would do without those! Does anyone here have any suggestions for making life easier for me at least until i can (hopefully) get my strength and stamina back? Thanks for reading!

[harley2ride]

TXBILL,
Even on CoQ10, L-Carnatine, and other supplements, it will likely take months before you start getting better (if you do get better). From my experience in these matters, very few people reach full recovery. Some mostly recover, and some like me, will only keep getting worse. If you are really bad, you may need to get a muscle biopsy and emg so that they can determine exactly what has been done to you. I highly suggest you find a doctor who is experienced in statin injury. Best of luck to you.

[TXBill]

Thanks for you reply, as depressing as it sounds i do appreciate it.:)

[Darrell]

Suggestions:

Try L-Carnitine for the muscle problems. Search this site for details.

Be sure you are taking enough Q10. Read Space Doc's advice on this.

Use medical-grade compression stockings (aka support hose) for the leg swelling, but somebody will have to help you get them on. Medical-grade, 15-20 mm Hg compression. Search Ames Walker or a major drugstore chain on-line.

Use a cane. It will help with stability and will take some load off your leg muscles. Especially good for steps and such. Get a simple wooden cane and have someone cut it to the proper length for you. This can also be bought on-line from a major drugstore chain. I must also add that there is a proper way to use a cane and I see lots of folks who are not doing it that way and thus not getting all the benefits.

Pace yourself. Brief exercise followed by longer rests. For a long time I lived on a schedule of doing an hour's worth of activity followed by two or three hours off my feet. It's a tough way to live, but I got more done that way than by not doing it that way. Less ache and weakness later in the day. Damaged muscles build up waste products and need rest until the waste products are removed, otherwise the damage may be compounding.

Hang in there. It can get better, and you're in the right place here.

[TXBill]

Thanks Darrell. I don't have leg swelling anymore because i take furosemide and spironolactone for the CHF, as well as Metprolol and Digoxin.

I know i am not taking enough Q10 because i didn't know the doseage when i went to Walmart so i have a bottle of 30 softgels at 50 mg each! i will look for the L-Carnitine when i go again on Friday. I am going to get a cane tonight when i leave the office. Thanks again!

[tex62]

TXBill,
My husband had very serious side effects after taking Zocor 20mg and Tricor 145mg. His recovery took about eight months, but he seems to be almost fully recovered. A noticeable recovery started after he began taking CoQ10 (approx. 1350 mg/day) and later, 1500mg/day of L-Carnitine. I searched for a doctor in Houston area who specializes in statin-induced damage. I wasn’t able to find anyone, but have since read several articles about a cardiologist in Tyler, TX (less than 4 hours from Houston) who specializes in CoQ10 research and statin recovery. I don’t know anything about him other than what I’ve read on the internet. If you can’t find anyone else who specializes in statin recovery, you might want to research his work and get in touch with him. His name is Dr. Peter Langsjoen. Regardless, I would suggest that you work with a doctor that you have confidence in.

[Cathy]

First get a handicap sticker if you don't already have one. Use a cane, it will help with balance. If you have insurance, push for a wheelchair or a scooter. This does sound drastic, but it will give you some of your independance back. It did me. Acepting all this is really hard, knowing that one 80mg. pill did this to me! I'm 3 years off lipitor, and without high doses of opoides, I still wouldn't be funcutioning. My legs have gone down, but am left with a "tan" from the calfs down. My corodination is getting better, but still can't walk any distance. Dr. told me I might get better, but I might just keep having the same problems, even developing new ones as time goes on. I'm not giving up by any means, just facing what could be, hence the wheelchair ect. I feel I had better get everything I can now, with the way the insurance companies are going and who knows what the future will hold. I also have trouble off and on with my hands working right, to say nothing about my mind takes a vacation some times, just can't think straight. Off my soap box now, hope you have better luck than I'm having......

[harley2ride]

Cathy,
With your worsening condition, have you had a recent muscle biopsy? I ask, because 1 yr ago, my condition was Myopathy, and Neuropathy, but recent biopsy shows Mitochondrial Myopathy, which is cellular level degeneration of your systems.

[TXBill]

Thanks for the replies and suggestions. I do have a handicapped placard for my car but it's my mom's old one and it expired in 04. Regardless, i have been using it and i will try to get one of my own. If i don't get better soon i am going to have to get another vehicle. My car is very low to the ground and it's extremely difficult to get in and out of now and it sure won't hold any kind of chair or scooter.

I had an appointment with a neurologist for July 27th, but i was in so much pain today that i called back this morning to get on a cancellation list and then they told me i could come in on Monday morning at 9:30.

[sos_group_owner]

Re: info from "tex62" to TXBill ~ *** I searched for a doctor in Houston area who specializes in statin-induced damage... Cardiologist in Tyler, TX (less than 4 hours from Houston) who specializes in CoQ10 research and statin recovery is Dr. Peter Langsjoen***

CoQ10 (approx. 1350 mg/day) [take as much as you can afford]
1500mg/day of L-Carnitine [maximum benefit from Acetyl L-Carnitine]

Hi TXBill,

I know of and highly recommend Dr Peter Langsjoen. He is tops in the field of statin-induced damage. If I lived in TX, I'd be on the phone monday morning making an appointment for my husband with persistent memory loss from 8 years of statins.

Walmart features Rexall brand CoQ10 which should be available in 200 mg & 300 mg capsules (gelcaps). Take CoQ10 with vitamin E (natural d-Alpha, NOT synthetic dl-Alpha) or with your fattiest meal. CoQ10 (powdered in a capsule) does not provide the benefit of gelcaps.

CoQ10 can lower BP, so since you are taking both Metprolol and Digoxin, closely monitor your BP as you increase the dose of CoQ10.

Fran

[TXBill]

Thanks Fran. I went to a neurologist this morning, http://www.theneurologycenter.com/, and i had a nerve conductivity test and then something else with the same machine where he stuck needles in different parts of my leg and arm. They focused on my left side because that is the side most affected. I got a script for a handicapped placard for my car, a script to control my muscle twitches (Clonispan or something like that). The Dr. says that something is agressively attacking my nerves and it could be the statins, or the diabetes, or my own immune system. He says that diabetic neuropathy is not usually this agressive. My sister has CDIP or somthing like that and that tends to run in families, so it may be that. He did say to NOT take anymore Lipitor or TriCor. I told him don't worry that won't happen.

Edit: I will next have a nerve biopsy, I'm waiting on the call for that now.

[sos_group_owner]

Hi TX Bill,

If your new drug is "KLONOPIN®" ?
Here's the link for info (including adverse effects):
[/url]http://www.druginfonet.com/index.php?pageID=klonopin.htm[url]
Excellent news that your doc is in agreement that you should not take Liptior and TriCor.

Please let us know the results of your nerve biopsy.

Fran

[TXBill]

[quote="sos_group_owner"]Hi TX Bill,

If your new drug is "KLONOPIN®" ?
Here's the link for info (including adverse effects):
[/url]http://www.druginfonet.com/index.php?pageID=klonopin.htm[url]
Excellent news that your doc is in agreement that you should not take Liptior and TriCor.

Please let us know the results of your nerve biopsy.

Fran[/quote]

Fran, my doctor said my only job right now was to never take anymore Lipitor or TriCor. He said that even if those drugs did not cause my current condition, that i didn't need the muscle pain and cramps that those drugs DID cause. The Clonazapam worked great last night, my muscles didn't start twitching till the drive into work this morning and i slept very well. I'll keep you all updated on the nerve biopsy.

[harley2ride]

Boy do I know how you feel. My new doc at the Elks Rehab, just put be on a new powerful muscle relaxent. I'll have to check the name and post it later, but I took one of those, and my restoral (sleeping pill), and the wife woke me up (I was still propped on my elbow on the couch, watching TV, asleep), within 35 minutes of taking them. Even after the wife woke me up, I went down to bed, and feel asleep immediately. That was the first good nights and fully restful sleep I've had in over two years. For the first time in 4 years, I was up two hours early for work, and had time to sit and watch the news, and enjoy a cup of coffee. No leg spasms or kicking (or at least I was so doped up that I didn't realize it). I'll make sure to look tonight and post the name of it here. With a good nights sleep under my belt, it will be a lot easier to endure a day of muscle pain...

[TXBill]

Harley I asked my doc about a muscle relaxant and his words were maybe not right now. Sure sounds like you enjoyed yours though, i may ask him again when i talk to him today. :D

[harley2ride]

The new drug my doc put me on is Zanaflex. Between that and my Restoral, I have actually slept through the night (and a very restful sleep), for two nights in a row now. Prior to that I have had broken and/or disturbed sleep for the past two years. Hopefully it will work for awhile. The Zanaflex is supposed to help relax my muscles, and it seems to work pretty good. Two nights ago, I fell asleep on the couch, laying on my side with my arm under my head and my elbow propped up. Man did my arm hurt when the wife woke me up to go to bed. First time in years I've fallen asleep watching TV.

[bunnylady]

My doctor won't give me a handicapped placard- I see so many people who can walk way better and have them- makes me mad

also, Fran how did you find that doctor-on the internet? are there any closer to Austin, Tx

Patty

[TXBill]

Patty if your dr. won't give you a placard you need to find another dr, because in my mind that's downright cruel.

My nerve biopsy is scheduled for Tuesday the 25th. I am hoping that after the drugs wear off I can come to work that day. Does anyone know if that is a realistic expectation?

[sos_group_owner]

Re: Fran how did you find that doctor-on the internet?
Are there any closer to Austin, Tx

Hi Patty,

I know of his (excellent) professional reputation and not an
internet search. Have you checked Naturopathic Physicians
in your area? You can search at this site:
[url]http://www.naturopathic.org/[/url]

Fran

[TXBill]

So I had a nerve biopsy on Tuesday and it takes three weeks to get back results. I lost my ballance yesterday trying to step up onto a curb and fell down pretty hard and i could not get back on my feet under my own power. I was lucky there was a landscape crew working right there and it took three of those guys to get me back on my feet. Since then the muscles in the back of my legs have been extremely tight to the point they hurt like the dickens. i have called the dr. office to see if there are any other tests they could be doing while we wait fo the biopsy results.