The search for meds to treat cavernous angiomas

Announcements of drug trials and other treatment information

Re: The search for meds to treat cavernous angiomas

Postby kirkmc » Thu Sep 20, 2012 9:22 am

Reassuring, isn't it? :-)
Two brainstem CAs in the pons. Big Bleed in July 2005, previous, undiagnosed bleeds in 1982 and 1987, and several smaller bleeds in the past few years. I live in a town in the French Alps. http://www.mcelhearn.com
User avatar
kirkmc
Site Admin
 
Posts: 469
Joined: Sat Sep 25, 2010 8:15 am
Location: A town in the French Alps

Re: The search for meds to treat cavernous angiomas

Postby penguru » Wed Sep 02, 2015 12:30 am

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!
penguru
 
Posts: 8
Joined: Fri Aug 28, 2015 11:20 am

Re: The search for meds to treat cavernous angiomas

Postby Connie Lee » Fri Sep 04, 2015 4:33 pm

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.
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 461
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Re: The search for meds to treat cavernous angiomas

Postby SavanaBel » Thu Feb 21, 2019 8:58 pm

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.
SavanaBel
 
Posts: 2
Joined: Mon Feb 18, 2019 6:14 pm

Re: The search for meds to treat cavernous angiomas

Postby Connie Lee » Fri Feb 22, 2019 6:06 pm

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
Connie Lee
President and CEO, Angioma Alliance
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 461
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Previous

Return to Drug Trials

Who is online

Users browsing this forum: No registered users and 1 guest