clinical trial for medication to help sleep apnea

[lucy555]

I have been asked to do a clinical trial for a medication used to treat sleep apnea. Anyone have any opinions or has anyone participated in something like this??

[MartiniLover]

I would be signing up in a New York second.

You have a 50/50 chance to get rid of the machine.

[NightHawkeye]

I would be signing up in a New York second.

You have a 50/50 chance to get rid of the machine.

Actually, MartiniLover, in a double-blind trial you'd have a 50/50 chance of being assigned to the group which receives the medication rather than a placebo. My guess would be that a medication like this, if it works at all, would only be applicable for apnea in specific circumstances, such as certain types of CSA. Hence, the odds of getting "rid of the machine" would be not nearly so good as 50/50.

Regards,
Bill

[blarg]

And I'd love to see a drug that's 100% effective.

[roster]

If they require you to sleep without cpap while taking the medication (or placebo), then I would not participate.

Did they give you any hints about how the medication is supposed to keep your airway open? Or is the medication only used in conjunction with cpap? If so, what is the purpose of the medication?

[Wistful]

I would try it!
I've been reading many articles that suggest OSA is at it's heart, neurological - that the neurotransmitters responsible for maintaining muscle tone while you sleep aren't functioning properly (not to say that other factors do not cause or affect it.) Anyhow, it's worth a try!
Erin (Wistful)

[bluegrassfan]

Lucy, when I had my sleep study, I had zero obstructive apneas, but I had 22 centrals. Is your problem obstructive or central? bob

[Slinky]

Get the trial literature and REALLY READ IT THOROUGHLY. It should answer a lot of your questions and give you some idea of what you might be letting yourself in for. If you are still somewhat interested volunteer for it and go for the interview to see if you really do qualify. That gives you an opportunity to get more indepth information and w/the previous studying you've done of the initial literature you know better which questions to ask. If still interested go thru w/the qualifying testing to see if you truly are a candidate. If approved and you are still interested go ahead and volunteer. The nice thing about these clinical trials is that you can opt out AT ANY TIME w/o penalty or reprisal.

I've taken part in one clinical trial, just started a second one and am currently taking part in a research trial that has been ongoing since 1987 that involves no medication, just a simple annual test. I admit (so I don't sound like some hero) that I only enter what I consider relatively "benign" clinical trials. For instance: one I volunteered for that was unfortunately cancelled before it started involved a zinc supplement for Crohn's disease. I've never had ANY interest in taking part in any of the biologicals clinical trials for Crohn's. I don't like the risks. The first one I took part in was the National Lung Cancer Screening trial. Again pretty benign, either an annual digital chest xray or an annual spiral CT scan of the lungs, plus annual blood draw, urine and sputum samples. Because of having COPD I would have had these tests anyway and the clinical trial saved my insurance some money. While we aren't given the results IF a problem had shown up, such as a questionable spot on the lung, my own doctors would have been immediately notified.

If you are interested check the situation out thoroughly then weigh the known risks, possible suggested risks and whether you are comfortable w/them vs the possible benefits to you.

[lucy555]

I have unfortunately never been able to use my cpap machine so I wll not have an issue not being bale to use it for the trial. My OSA is all hypopneas, so not sure if I will qualify, but I am going to try. I will keep the board updated on the trial. It is all medication no combo w/cpap etc.

[schaefage]

[quote="lucy555"]I have unfortunately never been able to use my cpap machine so I wll not have an issue not being bale to use it for the trial. My OSA is all hypopneas, so not sure if I will qualify, but I am going to try. I will keep the board updated on the trial. It is all medication no combo w/cpap etc.

[BrianRT]

I would wonder what the side effects (as no med is without them) are. Esp. VS. air pressure. I always liked the fact that PAP is pharacologically-free.

[Slinky]

Right on, BrianRT. I guess I just assumed everyone is as adverse to taking medications as I am. There is a COPD clinical trial just 1/2 hour from me I never even bothered to check into because it involves trying a new med. Instead I opted to take part in one 2 hours from me because it involves taking a medication I've taken before just once a day as a possible maintenance drug to reduce inflammation.

One thing I would caution: the more they are willing to pay you to take part in a clinical trial, the more risky it probably is. For instance, that National Lung Cancer Screening Trial I took part in paid $40 a visit. That was a 2 hour drive one way for me and the better part of a day, a meal and parking on my part. The local COPD clinical trial involving a new medication pays better than $300 per visit (and no parking fees or need for a meal). The COPD clinical trial for a new use for an approved and established medication as a maintenance drug that is two hours from me pays $50 a visit. The research trial I take part in once a year pays NOTHING and involves an 8 hour drive one way for me. BUT - I make the drive to that area anyway for a 4 day pleasure trip and have for years, long before entering that research trial and there is virtually no risk at all!

[lucy555]

The medication is not new. It will be a combo of 2 medications which I prefer not to mention because I would not want anyone to try them in case it is not successful. But I will keep you all updated and I will ask if I can mention what meds which will be used. And yes cpap is for hypopneas, but I could just not get used to the cpap. I could never fall asleep with it on. I have lost about 20 pounds and I think it is helping. We will see if I get retested, if there is any change. But I might have to give it another try after the trial ends. I am still sleepy during the day.

[Slinky]

Good, Lucy! Yer doing yer homework. Good luck. I sure hope they work for you!

[StillAnotherGuest]

It would seem to have to be at least one serotonin something-or-other, and they've been fiddling around with mirtazapine for years now. How about milnacipran as the other? Or is this a different approach? Hmm, or I wonder if it's Ambien. Or Xyrem. Wait! That's not my final answer...
SAG