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Dec 15, 2008 - 3 comments
Ok, don't get too excited. I was accepted to a trial but as far as I know at 54 I am still too old to do any of the MS trials.
I heard from the lead investigator for the Prinzmetal Angina study being done in Cincinnati, and I've been accepted to that group. The study is really very simple - the thought is that PA occurs because of a lack of nitric oxide. The NO deficiency appears to come from a deficiency that is seen through DNA testing. Because I can easily travel to Cinci, since it is only 50 miles from here, I will get an additional work up done by the doctor in six months.
They are testing an OTC supplement L-Arginine being added in twice daily doses to stop the angina attacks. It will be lovely if it works. Such a possible simple solution to a complex problem. Women and men all over the country are doing this trial - if they are too far to travel to Cincinnati, they mail a tube of blood to the hospital that is overseeing the test. the remote participants are having just basic DNA testing performed, while patients who can travel to the hospital are having much more extensive blood work performed.
I could have taken the easy way out and just started taking the L-arginie without doing the study, on the hopes that it works. But I feel that this is a small contribution I can make and perhaps PA patients in the future will have a simpler course of treatment. Taking nitroglycerin and nitrate based drugs is not necessarily the most pleasant drugs because they cause a dull headache each time you take it. Most PA patients I know have never gotten over the headache caused by these drugs - it's something you don't get used to.
Tomorrow I'll call and get my assessment appointment set - I'll keep you posted.
I heard from the lead investigator for the Prinzmetal Angina study being done in Cincinnati, and I've been accepted to that group. The study is really very simple - the thought is that PA occurs because of a lack of nitric oxide. The NO deficiency appears to come from a deficiency that is seen through DNA testing. Because I can easily travel to Cinci, since it is only 50 miles from here, I will get an additional work up done by the doctor in six months.
They are testing an OTC supplement L-Arginine being added in twice daily doses to stop the angina attacks. It will be lovely if it works. Such a possible simple solution to a complex problem. Women and men all over the country are doing this trial - if they are too far to travel to Cincinnati, they mail a tube of blood to the hospital that is overseeing the test. the remote participants are having just basic DNA testing performed, while patients who can travel to the hospital are having much more extensive blood work performed.
I could have taken the easy way out and just started taking the L-arginie without doing the study, on the hopes that it works. But I feel that this is a small contribution I can make and perhaps PA patients in the future will have a simpler course of treatment. Taking nitroglycerin and nitrate based drugs is not necessarily the most pleasant drugs because they cause a dull headache each time you take it. Most PA patients I know have never gotten over the headache caused by these drugs - it's something you don't get used to.
Tomorrow I'll call and get my assessment appointment set - I'll keep you posted.
How interesting. I guess we are both clinical trial'ers right now. I'm glad you found one that seems to be a good fit for you. Do you know if this will be a drug that will be readily available as well as affordable for patients? How did you find out about it? Then a gain, you are a super sleuth and really good at finding information. Do you know what else is involved in the testing when you get to Cincinnati? Is it being done at the university? Good for you for finding this trial. I hope it helps. I'll be watching for your updates if you are able to post them.
Julie
Julie
Laura, I think is the research group you had told me about, isn't it. I am sorry I haven't been in touch, there is no news yet on Cheri, For now there is a biopsy scheduled for next week, I don't do well with waiting, does anyone? I doupt it very much. ;-)
How was your week end? Saturday was busy and full with Jlatu's 9Th birthday party. It was a little difficult acting like every thing is OK, when you have all this fear going on.
I'll try to give you a call this week. Don't worry about me, I am hanging in there, just don't deal well with stress it does a number on me every time...
Know that I love you bunches... {{{{~!~}}}}
How was your week end? Saturday was busy and full with Jlatu's 9Th birthday party. It was a little difficult acting like every thing is OK, when you have all this fear going on.
I'll try to give you a call this week. Don't worry about me, I am hanging in there, just don't deal well with stress it does a number on me every time...
Know that I love you bunches... {{{{~!~}}}}
Julie,
It's through Jewish Hospital in Cincinnati. There has been much excitement and discussion on the womenheart board about it for around 6 months - I've been a bit distracted and just got around to contacting their team a couple weeks ago.
This is a very simple cure - it is an over the counter supplement - L-Arginine (actually good for lots of things) that they think will manage the Nitric Oxide levels in the blood and control the angina. My appt. is Jan. 7 - they offered to see me tomorrow but I have my MRI :-)
DJ, - keep trying to not worry - I know that's impossible right now. Call me if yo uwant to chat even if you don't know anything.
It's through Jewish Hospital in Cincinnati. There has been much excitement and discussion on the womenheart board about it for around 6 months - I've been a bit distracted and just got around to contacting their team a couple weeks ago.
This is a very simple cure - it is an over the counter supplement - L-Arginine (actually good for lots of things) that they think will manage the Nitric Oxide levels in the blood and control the angina. My appt. is Jan. 7 - they offered to see me tomorrow but I have my MRI :-)
DJ, - keep trying to not worry - I know that's impossible right now. Call me if yo uwant to chat even if you don't know anything.
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