Informed chioces/decisions

[Cat Mom2]

I have been so mad about my experience on statin drugs and the whole cholesterol scam that I was going off in a lot of different directions with it. Tonight I finally figured out WHAT has me so po'ed.

With all the lies and hidden truths about statin drugs and the constant denials from the doctors and drug companies, we all have been so terriably cheated. We have been cheated out of growing old as nature intended us to and cheated out of making informed decision and choices about our own lives.

For some reason, the drug companies decided we didn't need to make our own choices and decide if the benifits of their drug outweighed the side effects and what risks WE were willing to take, they made that choice for us by hiding the side effects. We were denied the right to make an informed decision about our own bodies.

Does that light a fire in anybody else like it does in me?

[pgrimm]

I can only speak for Bill, my olher half, who is the one suffering directly. He asks me several times a day, "Why did they do this to me? I was doing pretty well, I was working and I was strong". (Just two months ago he dug up entire yards, laid sprinklers, now he walks with a cane and can't work at all). He says, "Now my day is just this, taking these pills (supplements) laying around, this is going to be my life"?

As for me, it's an adjustment. I continue to think about making plans, to do things, just a day trip, or a weekend somewhere, then pull myself back to reality. Just a trip with Bill to the grocery store means he's exhausted and has to lay down when we get home.

We only met six years ago, and we were very active 55+ people. We went out every weekend, danced, played pool, just had fun. These days thinking about growing old is dicey, is this it? Robbed of doing this gracefully, certainly! First we have to find a way for the victims to get healthy, then I, for one, want to get EVEN!

So, you GO GIRL! GET MAD, THEN LEAD THE WAY! There are plenty of us to follow!

Take Care,
Pam

[Cat Mom2]

I started out a healthy person as your husband did. I am not as badly effected as he sounds to be but almost ended up like that. I am convinced that another year on them, I would have been on disability and not known WHY! I kept questioning WHY I was declining so fast and was in worse shape tham my Mother was when she died at 81. I was scared, alarmed and worried to death and kept asking myself "WHAT is happening to me?!!!!!"

If I had known my sudden onset of knee problems was caused by that drug in the second week I was on them, I would have quit taking them immdeiately and that would have saved me a ton of problems.... BUT!... that was not a listed side effect.

I quit them July of 2006 and it still isn't over for me. The doctors are so brainwashed that even if they will admit (and most won't) that your new problem is being caused by a statin, once off, they think the problem should be gone.

I think they should pay! Pay! Pay! I don't care about large sums of money but they should have to pay back my insurance company for all it has cost them and reinbursement me for all the co-pays and medicine I have had to buy. It was THEIR choice to hide these side effects and deprive us from making our own choices.

I gurantee you, if the insurance companies start trying to recover their losses for all of the ones who suffered and went to the doctors, had to pay back every dime paid for their drugs and all medical bills, this would NOT happen again! If they would be held responsiable and accountable, this madness would STOP!

[gotts1936]

Cat Mom2, God bless you! You give me courage to continue this fight.

[pgrimm]

Cat Mom 2,
Very well said. Bill said to me this morning, "Remember, I said that my arms are looking like my father's. I didn't know why they were getting so small and weak". You're so right. If only they would diagnose that this decline was the side effect of your statin drug, you wouldn't be where you are and suffer so much. I'm just furious. Each day I tell at least one more person, and insist that they keep talking to others about it. I believe they will. We have to not only talk to each other, but to everyone! I'm finding that no one I talk to is aware of this. But they either take a statin drug or know someone who does. I can't believe how ignorant we all were/are about the evils of the drug companies. How we just trust doctors and take whatever they tell us. And if patients ask about side effects, they just pat them on the head and say that their blood tests are normal. What a crock. I hate that people our age are being made to feel old before their time. I'm with you, hit them where it hurts, and I resent when people think we're wanting to sue for greet, that's so naive. Bill's daughter told him not to worry about sueing someone, just work on getting better. Yes, that's what the drug companies are counting on!!!

[Cat Mom2]

What has amazed me is in trying to spread the word by telling people about my own experience, you watch their faces and eventually that completely stunned look washes over them. You hit a nerve and they realize they are having side effects too and had wondered about these sudden aliments and what was happening to them. I found 4 out of 5 people I told about my experience had that stunned look sooner or later. One lady told me that her husband was on it, the doctor handed him the Rx and said "If you don't take this you will have a heart attack and DIE!"

[gotts1936]

Pam, If Bill told you his arms looked like his father's I believe him. After about six months on lovastatin I told my doctor that my legs are becoming deformed.. He laughed. Today, my legs are not the legs that carried me for 69 years. They have muscles where there should be no muscles and no muscles where there should be muscles.

[harley2ride]

Pgrimm,
I feel the frustration which you and your husband have. My story could be your husbands.. I was very strong and active, and now at 51, not so good.. I was very bad at a point, and if I hadn't decided to have a second muscle biopsy, they may not have found that I had mitochondrial myopathy, and not just statin injury (which is still bad). If my doc had not found that, and put me on Lyrica, I don't know where I would be now. It gave me 1 really good year, and now I've hit a bad spell again, and I'm not sure if it will last, or if I will get better again. I got bad, after trying to exercise a little bit. Now I back to doing hardly nothing. Which that is bad too, because without exercise, I will waist away. Sometimes it seems like a catch-22. If your husband hasn't had a biopsy, it might be a good idea to find a very good doc (check with the MDA), and a good neurologist, and see if it is more than Statin Myopathy... I wish the best for both of you.. My wife dumped me when I was diagnosed, and I lost my house and everything. Still have a lot of old medical debt ($40,000.00), but trying to work that out. I admire you for sticking it out......God bless you and your husband..

[pgrimm]

Harley2ride, I love your name, and if I'm not mistaken it speaks to what an active guy you were pre-statins. I've never even heard of lyrica, what is it? I'm google it. I drove Bill 250 miles last Thursday to the San Diego VA, thinking it was superior to the one in our town, Bakersfield, or even Los Angeles. Wrong. Lots of fiascos in one day, but mainly, they refused to do a muscle biopsy, the main thing we asked for. They simply did the general neurologist exam, then told us how incredibly lucky we were that they were able to do both a blood test (big whoop) and an EMG. I told them that the ck levels already came back normal and were likely to do so again, knowing it didn't mean that he didnt' have muscle damage. The EMG was normal, for the most part, as well. The doctor told him while she did the test that he was apparently doing well. I said are you kidding? He hasn't been able to work in almost three months. She responded nastily to me, well he wasn't on any pain medications, was he. So it was pretty much a huge disappointment. Bottom line is that the VA prescribed him not only lovastatin 20-40 mg for four years, but also four more drugs that interacted and caused this damage to show itself overnight, so they're not about to do a muscle biopsy to hang themselves! They know we're shoppig attorneys, who are just waiting for an official diagnosis to say that this was caused by their malpractice.

Question: Why did you have two muscle biopsies? And did these tests do any noticable damage themselves? That's the excuse the neurologist used for not giving it to Bill.

I'm so sorry your wife split, that's pretty cold. You were struck by this so young. We tell each other that at this point in life, we've got to be there for each other, you never know which one will need help getting through life, you know? I hope you find another gal more deserve, maybe a harley babe! Thanks for writing me. I appreciate it.

[harley2ride]

pgrimm


Lyrica is actually a medicine often prescribed to parkinsons patients (according to my doctor). It is for nerve/muscle pain. It does have a long list of possibly dangerous side effects, but for me, the decision was a no-brainer. I was already so tired of the constant pain/weekness, that I did not care. I've been a totally different/happy person, since I started the Lyrica. Worse side effect I had over the past year, was being higher than a kite, when I first started it, and when I increased dosage, but over time, that went away.

If you are in San Diego, I really suggest that you try to see Dr. Paul Phillips at Scripps Memorial. He knows what statins can do..

My first biopsy, nobody seemed to know what they were supposed to be looking for. They noticed some ragged red fibers, but not enough that they were concerned. I was getting worse at a regular pace, and a year later got another one. They definately noticed a progression with my muscles getting worse. Yes I did have a lot of pain and problems with those muscle areas where they did the biopsy, and I still do. But I would do them both again, just for the 1 good year I've had out of the past 4.

[Dee]

Hi Pam,

I second what Harley said, see if you can get an appointment with Dr. Phillips. Here is a link that may be of interest:

*http://www.annals.org/cgi/content/abstract/137/7/581

Dr. Phillips used to have the following site:

*http://www.impostertrial.com/

I see it says "temporarily unavailable". Anyone know what is going on with that? That was a very good site, with pictures and explanations of various muscle biopsy slides in regards to statin damage.

[Dee]

Pam,

Also about the muscle biopsy, my Neurologist insisted on doing an "open" biopsy, where an incision is made and the sample obtained. He would not do the needle type, he did not think it was sufficient.

It was done in his office, under a local anesthesia. It was creepy, but I felt no pain at all. It took several weeks to heal up, got infected, and left a 3 inch scare on my outer thigh.

The infection was perhaps due to me having diabetes, and was easily cleared up with Cephalexin.

I did not have the biopsy until I was off the statin for 6 months. I did not have the ragged red fibers, but the neurologist thought that part of the damage may have resolved in the 6 months.

The results did show permanent nerve damage and lipid deposits in the cells, indicating "possible mitrochondria damage".

I have NO pain or any other problems at the incision site, only a battle scar.

I'm pretty sure that Dr. Phillips does the needle type biopsy.

Since my muscle sample was sent to a neuromuscular lab in California, I tried to get some of it forwarded to Dr. Phillips for his study. Unfortunately it was shipped on regular ice, and would have had to be on dry ice for Dr. Phillips purposes.

[gotts1936]

Harley2ride, You appear to make a distinction between statin drug damage and mitochondria myopathy. Are they not one and the same?

Pam I have so much love for you. You have supported your mate after only being together six years. Many would have deserted him. If I may digress, Let me say it takes a very special person who accepts the responsibilities life arbitrary thrust up them. I have a son-in-law who took on the responsibility of my daughter and her three children without any reservations. And , not once complained over the years. God bless you and my son-in-law.