Please Tell Us Who You Are

[pgrimm]

In tring to find a way to take action against this horrible drug, it's been pointed out to me that the people here are suffering too much to do anymore than they already are in working towards their recovery. That makes perfect sense. But I know that there are also people here who are not victims themselves. We also have loved ones of victims, and I'm sure people who have other interests for their participation. Please take a moment to answer the poll so that we can get an idea of who we do have in our forum. Thanks. Pam

[gotts1936]

Pam, I am a statin victim and am participating in your poll.

[Brian C.]

Statin victim. 63 y.o. male, UK, 17 years on the poison (Zocor & Lipitor 80mg)
Had to retire from college teaching at 51 years.
11 months off now, some progress thanks to knowledge gleaned here and a monthly fortune in supplements but still can't do much.

Brian.

[cjbrooksjc]

I am a Lipitor/Zocor casualty. I am about 1&1/2 yr off statins.

[carbuffmom]

Iam a statin victim too. 13 years of Mevacor, Zocor, Zetia, and finally Vytorin. I have been off of statins for 2 years and 3 months. Iwas also diangnosed with ALS two years ago.

Deb

[Biologist]

Substantially the same as Brooks. I even started on Lipitor prior to Zocor. Six years total usage. 40 mg. per day at the end. Almost one and one-half years off the poison.

Biologist

[Jude Franey]

I am a 66 year old statin poisoning victim. Twenty eight months on Crestor and Zocor. I have been off them for fifteen months now and my muscles are still about 50% devastated even though I take all the supplements.

[BobbyH]

I am a 58 year old statin victim. On lipitor for 2 years at minimal dosages of 10 to 20 mg per day. Continuing to work but with great difficulty.

[valgators]

Another victim. 67 yr. old female. Started on Zocor briefly(made me dizzy) and then switched to Pravachol in the early 90's. I was healthy and not at particular risk except my total cholesterol count was high. Chronic history of muscle pain and weakness plus numerous episodes of tendonitis in different areas of the body.

Off Pravastatin for 4 weeks now. Hope this will improve something!

[gotts1936]

Pam, remember many of us who are statin drug victims have loved ones who are supporting us. Also, I am surprise at how long some of these victims were on statin drugs. After, I was on 40 mg of lovastatin for only seven weeks my legs were in pain, but my doctor kept me on lovastatin for an additional 6 months before he said, "I think you may be having a statin drug problem". My legs still hurt when I sit down, get up or walk and I have been off of lovastatin for six months. You sound like a real trooper. May be someone like you will light a fire under our butts and get us active.

[Cat Mom2]

61 year old female, 6 years on Lipitor. I was non functional the last the last 9 months on them. Quit July 2006 and am still suffering and having to get treatement for tendonitis in my right shoulder that leaves it useless at times. Started having knee joint problems only 2 weeks into starting Lipitor, joint pain was NOT on the insert then or I would have quit them then as it was horriable pain!

[SusieO]

50 yr. old female statin victim. Took Lipitor (10 and 5 mgs) on/off for 3 years. Stopped taking the drug 10/28/2004. Until 8/2007 I was so weak I was using a cane to walk and had a disabled parking permit. After seeking the help from a "healer" and a wellness doctor I am about 80% better, but still experience set backs when I take too many supplements (yet I don't know how much is too much until it happens). Most Rx meds no longer work for me - the pain/weakness return. I feel this will be a life long problem from taking Lipitor.

[ronni]

I am female and just turned 48. Was very active and apparently healthy when it was discovered that I had heart blockages. Along with two stents, my cardiologist put me on Vytorin 10/40 even though my cholesterol numbers were very low just because I had heart disease. I had muscle weakness within days but was told I just needed to get used to the new meds. Over the next 10 months, I became increasingly debilitated until I was barely functioning. I found this forum and insisted my doctor test for CoQ10 deficiency, which of course I had. Stopped taking Vytorin 8 months ago but I am no where near normal. I am currently being treated for Hypothyroidism and I feel just as bad as I did on statins.

[pgrimm]

I don't know how, but I know your responses here will lead to something good.

Today I figured out that at the very least, I will talk to everyone I can during my days about the dangers of statin drugs. Yesterday revealed that I have three (mental health) patients in only one facility who are on statin drugs, one of whom is having pain all over his body. I will definitely call their doctors and start something there, then watch the meds for all the others. Today I talked with an older employee who is on Lipitor and having shoulder pain, educated him on what I've learned here. I asked him to return the favor by talking to everyone he knows about this, he promises he will and said he will talk to his doctor first, but will quit lipitor, and was going to pickup some coenzyme Q10 on the way home. My ex-H said he just ordered the one that starts with the S, but wants to talk more before he starts taking it. I think if those of us who are out there can realistically start spreading the word to unsuspecting potential victims.

I can't get out of my head all your words of pain and suffering. It's hard to take it all in, I'm learning about this so fast. I watched my brave Bill sitting across from me in a coffee shop tonight, unable to sit a moment longer, in so much pain, and it's so rare that we get out like that. I know your lives must be similar, where everything you used to do is tainted, by the damage of this "poison" as you refer to it.

Maybe tomorrow another idea will come to me, another way to feel even more effective, a way to rally everyone who wants to do something, something realistic that will begin a force against this EVIL!

I do promise you, because I am so lucky to not be afflicted, I feel I owe something to this cause, and I will just keep working on this a day at a time. I am so sad for all your suffering. Greed is a terrible thing.

Pam

[SusieO]

Bless you for being so concerned about your Bill and the rest of us Pam!

[colcath]

I am a 53yr old mail on lipitor for 8yrs,all kinds of neuro problems been off them for 6months the only improvement at the moment is my body hair is starting to reappear.

[vipergg22]

Took statins for like 4 years 98-2002 . Within a month of starting them the first signs of perripheral neuropathy started , of course Dr. said it couldn't be the drugs . Kept taking them and symptoms got worse and worse . Went to a neurologist and he said it was PN with no known cause , yeah right!! Had mri done to eliminate back problems and pinched nerves. After doing research on the internet I found i wasn't alone. Quit the drugs after but the permanent nerve damage in both feet was done . I have little to no feeling left in either foot , I'm 50 years old . It slowly continues to get worse is starting to go up my leg . I am truly worried I won't be walking in 10 years . i still have 2 young kids that are 10 years old. I can't run at all anymore and my walking is limited to maybe a couple hours at most before the burning gets unbearable. I don't wish this affliction on anyone . This was main problem but had numerous other problems while on this poison , severe digestive problems , everything would run right thru me. Made me short tempered , would go to bed fine and wake up in the morning with my knees hurting so bad i could barely crawl to the bathroom . I have tried taking coq10, ALA , benfotiamine and various other supplements for this , some give a little relief but not much . Hope someone comes up with a cure for PN someday . It is tuff to even get a good nights sleep with this.

[rockingrammy]

After close to 8 years on Lipitor he is now off it and on the road to recovery. He experienced weakness, muscle spasms, memory loss, colitis (his gastro doc didn't think lipitor would cause colitis), depession, anger, etc. You all know the laundry list.

Last week he saw his GP and told him he had stopped the lipitor and why. The dr said maybe he was one of those people that develops adverse reactions over time. He asked the dr about testing CK levels but don't know if he did. Hubby also asked about homocysteine levels. Dr said that showed the possibility of having a heart attack and since he had already had one it wouldn't do any good. I guess if you've already had a heart attack you don't need to be checked to see if you are headed for another one. Hubby also asked about starting CoQ10. Dr said that if the niaspan didn't help to keep his cholesterol down then they would have to try another statin. If that happens then he would include the CoQ10. Hubby didn't tell him he would never take another statin. The dr did however say that Zetia didn't really work.

This same dr also stated that the reason he has never done an EKG is because he was using the lab results to monitor my husband's heart. I still don't know how checking the cholesterol, blood sugars, liver function and kidney function are going to tell you the patient has some blockages in an artery or some other heart function concern.

[pgrimm]

Dear Vipergg22,
I'm so sorry. I don't know how to respond to what you wrote other than it just breaks my heart. For you, for my Bill, and for everyone here with the courage to live with the damage and the courage to tell your story. You've been living with all this pain and disability for so long, you are very brave, and it's just all so unfair.
I'm just very, very sorry.
Thanks for sharing your experience.

[pgrimm]

I can relate the most to you. I think I can share what I've been doing that helps for me anway. I insisted that I take Bill to the ER. I told them his diagnosis. They laughed at me. I looked them dead in the eye and told them that I expected them to do both a CK level and muscle biopsy. They stopped laughing at me. The ER doctor looked at his list of meds from the VA doctors and simply said he was to stop taking everything but his BP medication. He sort of rolled his eyes as he said it, I suppose it was disapproval (disbelief) of the VA doctors (idiots) who prescribed the four medications known to interact with Lovastatin.

I would not depend upon your husbands PCP to initiate these tests. I wrote our local congressman. I believe it was the investigation his office initiated that got the VA to move their behinds and put a plan into action. I told them that I expected them to correctly diagnose this with a muscle biopsy and whatever else tests were required. I told them that he would definitely NOT go to the LA VA, I preferred San Diego. I told them that if they didn't do something soon, we had two atty's interested in taking our case, and who were watching what actions they were going to take to help Bill. Of course, their response was that they wanted to do right by him, and it had nothing to do with either the congressman nor the atty's! Yeah, right, do you believe that?

We can't let individual doctors have so much power. We have to immediately take the power, because we love these guys, and we alone can make things happen for them. You think his doctor is losing any sleep over him? No, you are! So girl, you get on the phone, call your congressman, or email him, as I did. Call your local news, find out if there is a grievance protocal with your insurance, but just do something, it will make you feel better, and just may get the tests hour husband should be getting.

I'm not through with this, I'm constantly thinking about this and how we can all pool our energy in fighting these coldhearted pillpushers who are destroying people's lives. They deserve all we can throw at them! One of our members here suggested we collect videos of victims telling their stories and putting them on You Tube! Isn't that a fabulous idea?