Friday, March 29, 2013

Statin adverse effect

Documenting this statin AE.  This is so common and well-known I can't imagine why that doctor gave it to me, or any transplant patient.

It also pushed up the level of cyclosporine in my blood, way up, so the clinic doctor called a little bit ago to say the blood culture shows a bad UTI that only IV antibiotics will fight.  I.e.  hospital.  No.  We will fight this with d-Mannose, which has worked before.  The women know about this.  The doctors don't.

So I thought, why not do this publicly?  Isn't this the best thing about social media that you can use it to tell on Big Brother?   Initial research tells me that many credentialed people think this is a very bad drug, useless in many cases, and the most profitable in the history of Big Pharm.  I found a study that gave people co-enzyme Q-10, so Tom is doing some research to find a good brand and will go out to get that.  

11:00 am
My feet and legs feel ice cold about 1/3 way up the calf, about halfway up the tight calf.
Very swollen.

I've had two or is it three helpless crying fits this morning. I feel confused.

I awoke early, maybe 6:30' so got about 5 hrs sleep.  

Of course my stomach is very upset.  Had cream of wheat for breakfast.

I also have large patches of cold  (neuropathy) on my back, right side, and right arm

Talked to nurse this morning who thought yes, this is a reaction to statin, and thinks the worst of it should be over in a week.  Sounds like heroin withdrawal.

11:25 acid reflux

Made it to bedroom.  Very short of breath, and right foot very painful to step on already.  It had felt not so bad when I got up.   Dr. Dapore had said keep it elevated, ice 20 on, 20 off. I'm using my phone as a timer.
I feel miserable.
Stomach still upset.  A pain pill has not made the legs feel better, but did lift my spirits some.

I'm doing this from my iPad in bed, which is much better than not having an iPad, but is cranky, and I can't get the picture function to work so I will just have to post pix of my swollen feet on Facebook. I can send them directly there from my phone.


  1. This is awful. I'm so sorry you're going through this. I'm thinking very unpleasant thoughts about the doctor who prescribed this for you.

    1. Thank you, Barb. It's nice to know someone in GA is listening. I'm surprised how few of my blogger friends, or indeed, Facebook "friends" have commented on this. No one has come by with chicken noodle soup, but Tom bought me a chocolate rabbit yesterday when he went out to get the C0-enzyme Q10.

    2. Jeanne, I am shocked and dismayed at all your suffering. I am also in awe of the research you and Tom have done and continue to do to try to navigate your recovery. Keeping you close in thoughts and prayers. Those feet couldn't be worse! And the UTI is very worrysome. Please know your are so very dear! JF

    3. Hello Anonymous (I can't figure out who you are) and thank you. Thank you very much. I'm off to drink a lot of water now, and ice foot. It's really nice to know someone cares.

  2. Yes, you need Red Yeast Rice and Co-Q-10( 30mg or more):

    This company ships fast and inexpensive.

    Referral code BER846 for 5% off
    Hope this helps Tom and you.

    1. Thank you - I didn't know about red yeast rice. Can you recommend a brand and dosage? I may get it from, which I use a lot. I am taking the Co-Q 10 and seemed to get a remarkable lift from it yesterday.

    2. I see they offer a Jarrow formula. I use their probiotic.

  3. This comment has been removed by the author.

  4. Crap! My sympathies for your pain and fear and frustration and anger and what have you. To have to monitor your meds so closely when the doctor is an expert is scary indeed. Best of luck to you and Tom. I am sorry this is happening.

    1. Thanks, Melanie. Yes, this has been an opportunity to work with a number of difficult emotions.

  5. Jarrow has a good rep, but I have also used NOW, and Dr.s Best. If you can afford to do 60-100 of Co-Q-10 and 1000-1200 of red yeast rice....divided into two doses. Not a medical or holistic Dr, but I have been on top of my health since 20, and survived my medical malpractice Bi-lateral strokes, and am considered a miracle by neurologists. I am the worst cast many have seen and still walking around, and traveling.

    Your easter lilies sprouting through old leaves reminds me of my old body and new children are the green lilies.

    1. Your old body's not that old, is it? Feels that way to you, though. I feel compassion for mine. I've now been basically off my feet and certainly not exercising for a week. You lose so much conditioning.
      I get a noticeable psychic lift from the Co-Q-10. I'm still pondering red yeast rice, and wondering if you can buy it to eat now and then. The Wikipedia article on it made me worry a little about dosage. I'd always rather get what I need for food.