1: Fri Mar 13, 2009 8:33pm neecieap
My neurologist has prescribed statins in light of all the new info
Is anyone else taking or plan t take them?
2: Sat Mar 14, 2009 8:36am thatkat
I was on Lipitor for several years prior to my bleed two years ago. My cholesterol was high even with diet, exercise, and being at a good weight. I stopped taking it after the bleed, due to the potential side effects. Since I was having muscle problems with the bleed, I didn't want the potential for more from the medication. My cholesterol is still relatively high, but okay since I have no other risk factors for heart disease.
I don't know that I would take statins again due to the side effects, and the fact that I was taking them when I had my bleed. I am not discounting the research; I am only replying from my own experience.
3: Sat Mar 14, 2009 11:34am neecieap
You had a bleed after being on it several years? That is discouraging!
My cholesterol is kinda high too - so I figured it can't hurt, but I don't need any additional side effects either!
Thank you for your input!
4: Sat Mar 14, 2009 12:02pm neecieap
Kathy - was your bleed bad? Any chance the statins may have made it less bad? I know I'm reaching for any tidbit of hope! I just don't think I can handle another one.
5: Sat Mar 14, 2009 2:13pm thatkat
The bleed was actually pretty small, but in a bad area, the left midbrain. :o) It is possible that the statin could have lessened the bleed; I really don't know. I have been left with muscle spasticity and weakness on my right side - mostly only in my right leg now. Since one of the side effects of statins can be muscle problems, I don't want to chance any more problems than I already have. I am also left with dizziness, tremors, ataxia, and vision problems. Most of these are helped with medications.
I am in no way saying that statins will not help with preventing bleeds. It's just, for now, the potential side effects out way the potential benifits for me. If the research continues to prove promising, I could very well change my mind.
I would do what your doctor thinks is best. I made a decision that I thought was best for me. :o)
I hope this helps! I wasn't trying to be discouraging. I only wanted to relate my experience.
Best of luck,
6: Sat Mar 14, 2009 4:02pm neecieap
I totally understand - thank you!
7: Sat Mar 14, 2009 6:22pm libby
I had a major bleed every year with one exception from 99 thru 05. I have been on Statins for 4 years. No major bleeds the last three. (though some impressive oozes) I don't know if the statins helped, but they certainly haven't hurt.
8: Sat Mar 14, 2009 7:27pm neecieap
Libby, so you have been on the statins since 05? And have had 3 bleeds plus oozes since then?
9: Sat Mar 14, 2009 7:30pm libby
NO NO NO
I am not having my best day and apparently did not make myself clear.
I have not had a major or even minor bleed since 06. I have had a couple oozes cause I got a sudden onset of symptoms, but it didn't show on the MRI
10: Sat Mar 14, 2009 7:33pm neecieap
OOOOHHHH!! I am with you now - I'm not having the best day either and probably just can't get my brain to understand things
11: Sun Mar 15, 2009 5:42am kirkmc
If I may just remind you what Connie said in the last issue of our newsletter:
It may be tempting to run to your doctor and get a prescription for any of the medications that will be tried, because as far as we know, those under consideration are already on the market. There are at least three reasons why this may not be a good idea:
1. The medications under consideration have been tested only in mice and fish that have been genetically engineered to have the hereditary form of cavernous angioma. They have not been tested in humans with cavernous angiomas. This means that they may not work or may indeed have a negative effect. To be as safe as possible, anyone taking a trial medication should be under the supervision of the researcher who is running the trial.
2. If you take a medication for the treatment of cavernous angiomas before it is shown to be effective in humans, you will become ineligible for participation in drug studies until you have been off the medication for a period of time. To prove that a medication works, we will initially need a small number of people to participate in pilot studies, then many people to participate in broader clinical trials. We need to help research move these possible treatments forward quickly and not muck up the studies with unsupervised use.
3. A study may actually be trying to compare the effectiveness of a particular medication on a variety of disorders. It may turn out that a medication works well for treating other vascular malformations but does not work for cavernous angiomas. Just because a medication is under study does not mean it is a good candidate for treating our specifc lesions.
12: Sun Mar 15, 2009 6:57am libby
You do realize that the med is safe. People have taken it for years. The med has been thoroughly tested as cholesterol deterrent.
You also realize that I take Statins because I have to for my cholesterol. It caught my attention because I already take them.
3. Where have you been?I haven't seen you for awhile.
13: Sun Mar 15, 2009 7:29am kirkmc
Of course I know they're safe (at least for most people). I'm just reiterating what Connie said, that you shouldn't start taking them for CAs just because there's a research study.
I've been around... Busy with work, and other stuff. I've been checking in here regularly, but haven't had anything much to say. :-)
14: Sun Mar 15, 2009 11:09am neecieap
I have high cholesterol too, so my thinking was it really can't hurt. At the least it will help my cholesterol.
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