Wednesday, May 2, 2012

The Experiment Continues with Atorvastatin

A quick update on my statins experiment...

Initially I tried going on simvastatin 20mg, taken nightly before bed.  It was a disaster.  :(

Taking simvastatin I ended up feeling as worse as I have for the past year with symptoms arising that were similar to the beginnings of my hemorrhage a year ago, after only 4 days on the medication.  It was very scary as I thought I might be at the beginning of a new bleed, it was that bad.  Thankfully the progression stopped after I ceased taking the drug and I recovered within a couple of days.

I ended up with fairly fast symptoms exacerbating my usual numbness after taking simvastatin at night and would have insomnia from it (from feeling bad all night). The next days after taking simvastatin would be fairly poor with increased nausea, and numbness on the worst day was extensive with backs of arms, back of ears and pronounced in feet, hands, mouth, tongue. The characterization of the numbness was unusual in its severity especially, but extensions of my usual symptoms associated with my cavernous malformation. I had some headache associated with taking this also, and some muscle soreness which was fairly light.

So now I am switching to a better statin called atorvastatin.  One thing that promises improvement in taking it for my condition is that while simvastatin has a half-life of some 2-5 hours, atorvastatin has a half-life (including active metabolites) of 14-25 hours.  Since I am going for a potential stabilizing effect for my cavernous malformation, having more of a sustained stream active effect in my system seems like a better idea, and even for cholesterol management atorvastatin usually trumps simvastatin and this is partly attributed to its respective half life.

So I have been trying 5mg daily atorvastatin and already found a limit there after 5-6 days where symptoms especially nausea are not tolerable, but no where near how bad the simvastatin was!  So after a few days here of detoxing I am trying a further reduced dosage, and hoping I can get to a level where I can live with it and still have some potential benefits.

My experiment continues!


  1. Hi Josh,

    How wonderful that you are taking part in the statins study. I'm terrified of taking any medications since my bleed (no matter what it is). Hopefully soon you find the perfect middle ground of tolerable side effects and benefits. I give you much credit, thanks for doing this for not only yourself, but the angioma community as well :) Do you know how many other people are taking part, too?

  2. Sadly I am not in the study, which I think it still recruiting ... , but I would if I could qualify! The criteria include "Have a confirmed diagnosis of CCM1-CHM by DNA testing." which is pretty unlikely for me since I have the sporadic form like you! (though I have also asked about testing anyway...)

    So that left me with little choice but to undertake my own individual study. (time is of the essence but yes going out on a limb here) Its been no easy feat, and feel sorry for study participants since simvastatin is pretty rough from my experience, I could drop out of that after 4 days.

    I did clear this with all the docs in my life, and they generally thought that "it couldn't hurt" and "worth a try" type of opinion! I'll certainly keep folks updated on the status of my study of one, especially with how scientific it is. :)

  3. Ah. the study. My son won't get tested. I find it frustrating and illogical. But it's his decision. Regardless, it does mean he can't participate in the study, if he were eligible. Perhaps he will change his mind...

    Meanwhile, our doctors have offered to prescribe it for him. And we've been debating it heavily. Of course it will mean he's not eligible for any studies at that point, and there are the side effects. (But, his dad is on it without any negative reactions, so we're optimistic. His has been a very good experience.)

    So, like all things it seems, it's a struggle. Thank you for sharing and updating us, it makes it all a little easier.

  4. Hi Josh,

    How is the statin treatment going for you? I have a cavernoma in the deep left parietal lobe, and would be risky to take out. trying simvastatin 5mg a day. on for 5 days so far no results. yesterday had a bad headache and kept waking me up with anxiety at night and today have weak right leg, stiff fingers on r. side and right arm slightly weak.

    let me know what is your progress. i have 1 CA in this area 0.9cm before bleed.

    skpeng (ANgioma Alliance)

    1. Hi skpeng,

      Your comment here reminds me I have not blogged an update here!!! Thanks for the nudge.

      Simvastatin was pretty bad for me in terms of side effects, but I tolerated lower dose atorvastatin pretty well for a while (months), and I attribute this to the difference in half life in how the drug functions. It turns out that there is some statin intolerance in my family and I ended up having to go off of it ultimately as lots of long term complications (muscle soreness, spasms, etc etc).

      I was maybe having some benefits from what I could tell for my CA/CM and possible shrinkage as seen on MRI but hard to say really, so I wish I could stay on the low dose but I can't. I will try again a super low dose and see but not having much hope it will work out. What was clear to me was that the statin were creating some impact on my CM and I could feel the difference within an hour, whether that was a good or bad impact ultimately we'll likely never know.

      Good luck figuring something out that works, I understand what its like looking for some treatment option when surgery is risky!


  5. Josh,

    Try taking alternate months with large doses of co-enzyme q10. Also can you explain what sort of impact you had while taking statins? good or bad?

    i have been on 5mg simvastatin for 6 days now, felt better first few days then tried to over exert myself and symptoms of a small rebleed came back. will try longer and update your blood as another self based experiement.

    good luck

  6. Right! I tried the co-q10 & Ubiquinol type to little effect, certainly hoped it would help but didn't.

    I have had 2 main impacts on the statins...

    1st the good. There is a certain washed out feeling I get from the CA/CM especially, not all the time but often especially when tired/stressed/etc. I can feel pretty wiped from it, and it comes with numbness in foot and across the face and more rarely other parts of the body. Symptoms that are pretty similar to when I had my first bleed but less severe. The statins (atorvastatin for me) helped eliminate that feeling probably after weeks of taking it. If statins help improve vascular integrity/leaking it makes sense, some upside. Further I had an MRI that showed potential shrinking after 4 months or so on statins, just maybe. But it was a rough MRI so hard to get too excited about it. One thing interesting with the statins is that there is some numbness/burning in my mouth sometimes (subtle) that seems to spike an hour+ or so after taking the statins, so is has a pretty clear impact on whatever is going on with the CM triggering these symptoms.

    Then the bad. The statins mess with my muscles. Soreness like after a workout but will never go away. Muscle spams like spontaneous charlie horses, or just muscle twitching constantly. I have done some research on this and its some 10-20% of folks that cannot tolerate statins, has some hereditary component to this and its pretty complex and folks are still trying to figure it out. Also with the statins came tension headaches I suspect but more from tension in neck etc back to the messing with muscles. Most of this came after taking the statins for months. Apparently it can start weeks to a year after starting a statin program if it happens at all.

    & I have tried simvastatin, atorvastatin, and finally pitavastatin. Simvastatin was pretty terrible, thought I was having a bleed again after several days. Pitavastatin was a real disaster for me. 5mg every other day of atorvastatin was were I had the most luck but just could not keep it up with the muscle issues. Tried less. Tried a bit recently but not good. *sigh*

    So if it weren't for the muscle issue I would be on them still for this experiment for trying to manage the cavernous malformation/angioma.

    Good luck with your own experiment!

  7. Hi Josh,

    I have feet/toe numbness and leg wobbly/weakeness like leg is getting numb and stiff and carrying a heavier load. And i do get tired out easy, when over work or over stress. the weakness, numbness will return but not as bad as the bleed i had few months back.

    i can't exercise much at the moment, if i do i get a headache and feels my head is being squeezed at the left side, my CA is at the parietal lobe, deep seated.

    Feels like i can't do much at the moment but to let it get more stable before doing more then walking , stretching and trying to keep active as much as possible.

    i am doing ok with simvastatins so far but its only my 2nd week. i will report in when i do get better results. However, i feel i am losing my memory. i said something few moments ago and then forget what was the movie i just mentioned. not sure if i can take statins longer haha.

    have you asked your neuro, for fasudil? Uni. of Chicago has good results with it on lab rats :)


    1. Sounds rough, good that you are taking care of yourself!

      Talk to your doctor about the memory issues and anything else with simvastatin. I have read about one potential side effecting being memory loss, so alarming that you mentioned that! These statins are serious drugs with large impacts so good to take care and caution!

      Fasudil, yea right. That the big league stuff. You have obviously done your homework as well! At least I have a reason for taking statins anyway (cholesterol), but we are years out from fasudil being cleared for us as a therapy if ever. Its tough being in the rare disease pool since the research is slow going but at least they are working on it. :)