Lipitor and problems

[CatMom]

I have been on lipitor for longer than I care to admit, somewhere around 6 (?) years. I started out on 10 mg and have worked my way up to 40. I never connected my "ailments" to lipitor until I saw a ad on TV about a week ago by some lawyer asking for people who had been taking this drug and suffered a long list of ailments, MEMORY loss was one of them. That was a major light bulb moment in my life!

November of last year, I had that dreaded colonscopy done and ever since I have had major memory loss and confusion. I associated it with the drugs given to me for that, never the lipitor. I had thought it would pass but it hasn't and I am noticing more and more things that I am forgetting.

In researching this memory loss thing on the internet, I am beginning to see exactly what this drug has done to me. About 5 years ago, I had the sudden onset of horriable pain in my knees, both of them starting to ache like heck at exactly the same moment with no prior problems or even a hint of a problem. All the lipitor stuff said muscle pain, this is joint pain.

Several years later, I got this odd swelling in my feet. Not the whole foot swelling, just swelling in spots, both feet, exactly the same spots and it is painful. I had a emergency room visit and later saw 2 different doctors about this and was given fluid pills and sent on my merry way. Fluid pills don't touch that odd swelling and it is still there. Nothing I have done has got rid of it and I have tried everything the doctors told me to do.

I have had cramps in my feet at night and couldn't figure out why and have had sudden bouts of vertigo.

On two differnt occasions, two different people have swore we had a conversation on a specific topic, years apart and I thought they were crazy, there never was no conversation. I still don't know if there was or not but now I am beginning to wonder.

I now realize I need to get off this stuff. Can you just quit taking it or do you need to slowely get off. What other natural methods are there to lower it, I got high cholesterol from my Mom and it goes through the roof without something. Diet and excercise does not bring mine down but a tiny bit.

I am so glad I found this place and people who will not think think I am crazy!

[carbuffmom]

Hi CatMom:

You should definitely taper off of the lipitor gradually. I was on statins for 13 years and quit cold turkey. I felt terrible---lost weight, was spacey, had vertigo, etc. Take at least three weeks to taper off. Cut your pills in half, etc.

I follow Dr Graveline's alternative reccomendations of CoQ10, B Vitamins, folic acid, etc. I have been off statins for about 6 mos. I'm really not much better, but I haven't gotten any worse, for which I am grateful.

Good luck--I hope your symptoms improve a lot.
Best wishes, Deb

[CatMom]

I have already started cutting them in half and had planned to take that several weeks, then cut that in half, take that a couple of weeks, then skip 1 day about a week, skip 2 days and work on up to none per day... Does that sound like a good way to do it?

I was thinking. My mothers cholesterol was sky high well over 360 when she died in her 80's. Her heart was strong and didn't ever have any heart problems, she died of cancer.... so I am now wondering if I even needed to be on this stuff..

I have been thinking back and I realize now that I haven't been on it but 5 to 6 years and the knee pain started with in the first several months I was on it because I checked the insert on it for joint pain and there was no mention of joint pain.

[bunnylady]

I was in a car accident when I was 30- that was in 1979- broke both knees- I caught on to the Lipitor and all of its side effects and went off 2 months ago - saw a doctor about knee repacement of the right knee- then my internist told me Crestor was mild compared to Liptor and to try 5 g a day- 3 days of that and I thought I was dying- my knees are in constant severe pain compared to the regular pain I've had for years- I need a cane and a pull to hold onto to get up- its caused severe migraines too- once I get the migraines in check I'll have my knee doctor test me for pre surgery and see if I pass- I don't want any surprises while under- it seems surgery makes the symptoms worse-

I've read so much about the knee pain statins cause I know I'm not crazy now- darn doctors- I just sent my doc an e mail and a reference to this website- I also have lost all feeling in my left finger and side of the hand and I was a 90 wpm typist- I feel like everything in life is being slowly taken away- I'd rather just die fast! LOL!

family doesn't understand so this forum is nice to visit fellow sufferers

Patty

[carbuffmom]

Dr. Beatrice Golomb, who is doing a statin study at UCSD, says that women shouldn't take statins period! It has not been proven effective in women. If I could take it back, I would never have taken any statin medication---I started at age 35---now I'm 48 and am in the worst shape of my life. I'm just so darn mad. It's a bad day. I have been having Occupational Therapy on my arms and I think the therapy is making them worse and weaker. I just don't know what to do. One neuro thinks I may have ALS which scares me to death.

Catmom, I have a bad family history like yours, but I have decided to never take statins again. Start taking some CoQ10---it may make you feel better. Hang in there----we have to!

[CatMom]

I just found my paperwork and I started the 40mg in September or October and it was in November that I started having memory problems and confision.

If I had it all to do over, I never would have started these things and it has taught me a lesson... DON'T take ANY new medicine!! I am SO mad... Sad thing is I know if I bring it up with my doctor he is going to disagree with all this and I really think my head fog is lifting.

[QueenBee]

CatMom: You and I have a similar history. High genetic cholesterol, been on statins for 10 years. Have not noticed any big side effects until just recently, with severe pain in both knees. Went off the Lipitor cold turkey, no ill effects from that. Taking high doses CoQ10 and l-carnitine and still no relief. Did you see your doctor when you started having the knee pain? Has anything helped you? I'm getting ready to see my doctor because I cannot imagine continuing the rest of my life like this without some relief. The muscles on the top of my knee and the knee itself have a "burn" sensation to them, also. I have been using ice or BioFreeze and that helps but the pain and the burn always come back.

QueenBee

[SusieQ]

[quote="QueenBee"]Have not noticed any big side effects until just recently, with severe pain in both knees. ... Has anything helped you?
QueenBee[/quote]
I was only Lipitor for 2 years and my knees got better in a few weeks following the protocol you describe. I have two suggestions. One, have you tried glucosomine? That really helps my knees.
Second, you might try resting your knees by using your arms to help you out of a chair and also using the proper technique where you first slide forward in the chair to reduce the stress on your knees (and hips).
I have some trouble with my knees for years. 13 years ago I broke my ankle so had to use a wheelchair and couldn't go up and down stairs for about 6 weeks. That rest really helped my knees.

[CatMom]

(Sorry, I had to go back to work and that required me to be gone a month and without internet connection.)

Queenbee, I found Aleve helped me with the pain in my knees and I had to take them faithfully or the pain was back within 24 hours. Since I have been off of Lipitor, the pain in my knees is TOTALLY gone, completely! Not a hint of any pain... Yes, I did talk to my doctor about the pain and he gave me a Rx for that Celebrex... Once I read the insert on those, I poured them out without taking a one of them.

Now that I have been off of them and on the things suggested here for around 6 or 7 weeks, I now have a true grasp on how much of my life that stuff had stolen from me. It had zapped me of just about all my energy and I didn't even realize it until I got off the stuff and got my energy back. The change was so noticable that the people I work with commented on the change they saw in me. There was all sorts of things I noticed, changes for the better.... I didn't burp anymore! I was constantly burping all day long before.. No more indigestion that had been a constant companion before. Food I had to give up because of the indigestion, I could now eat again!

Best of all, with my mind back to normal and being able to remember things again, I got the confidence back to do the job I do and do it well again. It had stolen that from me and the love and excitement I had for my job. I didn't realize just what bad shape I was really in until I got BETTER! It stole my life a piece at a time and it was so sly at how it was done that I didn't even realize it. I now know what the miracle of Lipitor is... The miracle happens when you get off the stuff!

[JL]

Catmom, I am really happy for you. The wellness that you are feeling is probably caused by having your cholesterol levels higher where they belong. When you get enough of your confidence back and feel stronger make sure you give your doctor a piece of your mind on all the suffering you went through while he was in denial mode. Tell him that he was largely to blame for your suffering. Doctors need to learn how to take responsibility for their stupid actions. JL

[CatMom]

I plan to JL.. At first I didn't know if I wanted to even bother since we know what he is going to try to do...(hand me another Rx for a different kind of statin drug) and I just didn't want the hassle of the disagreement I know is going to happen BUT.... after seeing how much of my life it had stole, he NEEDS to know and I am ready now to go head to head with him over this... I AM MAD! I also am hoping it may open his eyes and help the next person or maybe think twice before putting someone else on this stuff... I really doubt it but if enough people complain to the doctors, sooner or later, they will come to realize this stuff ruins LIVES!

[QueenBee]

CatMom: I went to see my doc. He said that my knee pain was from some muscles pulling on the kneecap because other muscles were weak and had inflamation. I have been taking 800mg motrin for over two weeks 3x a day and just get by. He sent me to rehab and the therapist says my leg muscles are the tightest he has ever seen. Before we even get the part of strengthening the weak muscles, I have to do all these exercises to relax all the major (and not so major) muscles in my legs.My doc was also not happy I went off the Lipitor and told me to go back on it for two weeks and then come in for the blood test. I'm not going back on it. I don't know why an otherwise healthy woman suddenly has her leg muscles freeze up! I really think its the Lipitor. Anybody else have the really tight muscle symptoms?
QueenBee

[CatMom]

Queenbee, I really find that typical after reading as much as I have on this stuff that your doctor thinks it is something else and sending you for physical therapy, EVERYBODY wins but YOU! (Or your medical insurance)

I haven't went to see my doctor yet to tell him I am off the stuff but I know I will have to in a week or so. Until then, I am collecting some stuff (off the internet) to hand him although I doubt he will look at it. Those doctors that believe in the stuff, are not interested in hearing the other side of the story and my doctor is a pill pusher, quick to pull out the Rx tablet so I am sure he will not listen or read the stuff I am going to take him.

I figure after this next visit, I will be looking for another primary care doctor...

[Cat Mom2]

I did end up going and telling him I am off the statin. He asked what side effects I had and I told him to look in my chart and see the complaints that he brushed off, knee pain, swelling feet and he butted in and stopped me saying, "OK, we will try another statin and see how you do and started writting out a Rx... I told him "NO THANKS! I will NOT ever take another statin drug!".. His reaction? He seemed relieved! The rest of the visit, he was joking and happier than I ever saw him.

I have been off now for 8 months. I find I am still having memory problems but I am functional. All symptoms have gone away except for the odd swelling in my feet, that seems more and more to be a problem. Just yesterday I got up to find I suddenly and without warning have Carpal Tunnel in my left wrist. I seem to have the sudden onset of joint pain that moves around in my body, now it is my wrist, it was in my ankle before. WILL IT EVER END?

My cholesterol check when I went to the doctor and on the supplements suggested here, was 253 and I was THRILLED! When the nurse called to tell me, she said my numbers were "high", I asked her "high for WHO? Certianlly not to high for me!"....... I am trusting my body to let me know what it needs from now on and low cholesterol ... it does NOT like!