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Re: The search for meds to treat cavernous angiomas

PostPosted: Thu Sep 20, 2012 9:22 am
by kirkmc
Reassuring, isn't it? :-)

Re: The search for meds to treat cavernous angiomas

PostPosted: Wed Sep 02, 2015 12:30 am
by penguru
I am replying to ask if the use of statins has developed further as a possible treatment to help prevent anginoma or cavernomas. If you saw my post a few days ago, I descibed my 3 bleeds over a year and a half. I have mild headaches still and left eye impairment. I took 40 mg Lipitor per day before the bleeds and 20 mg now.
Thanks for your help!

Re: The search for meds to treat cavernous angiomas

PostPosted: Fri Sep 04, 2015 4:33 pm
by Connie Lee
Hi penguru,
It looks as though statins may be the first of a number of medications going into drug trials soon. One issue is one of dosage - it's not clear that 20 or 40 mg actually has any effect on cavernous angioma. That would be one of the goals of the trial - to see if there is a tolerable dose that has an effect.

Re: The search for meds to treat cavernous angiomas

PostPosted: Thu Feb 21, 2019 8:58 pm
by SavanaBel
I was diagnosed last year with multiple CCMs, three of which had bled and were larger. The one affecting my eyesight is inoperable. My doctor at Barrows Institute put me on Propranolol 20 mg twice a day. I just had my follow up MRI and all are "stable" but who knows if it was the propranolol or not. I believe he is trying to start a study about it. Since I was taking a blood pressure med anyway, I just figured it wouldn't hurt to change to his suggested one. Has anyone heard anything about new drug trials lately? I see all these posts are older.

Re: The search for meds to treat cavernous angiomas

PostPosted: Fri Feb 22, 2019 6:06 pm
by Connie Lee
Hi SavanaBel,
Yes! Drug trials have started. There will be a webinar with updates about the atorvastatin trial on Monday, Feb 25th. You can register at https://www.tinyurl.com/cashtrialupdate.

A formal propranolol trial has started in Italy and is hoping to expand to other centers in Europe. The Barrow and UVA have a less formal trial - I believe they are calling it a registry - but I'm happy to hear you are a part of it.

Finally, Recursion has developed a brand new drug, REC-994, that has entered Phase I safety trials. These trials use healthy adults to make sure the drug is safe for humans. If all goes as planned, they will enter Phase II - a small trial with our patients, sometime in 2020.

There is much more information on our website in the Research section. Please be sure to join our patient registry - it is how we push information to you - at http://www.angiomaregistry.org