Psycho-Babble Medication Thread 16324

Shown: posts 1 to 11 of 11. This is the beginning of the thread.

 

joining research studies, any opinions?

Posted by CarolAnn on December 6, 1999, at 14:54:55

Just found out there is a Clinical Research facility here in Orlando that is currently screening for participants, in various Antidepressant trials. I'm thinking about trying to get in one of the studies(particularly one on patients who have not responded to any past medications). I see my Pdoc tomorrow and am going to mention it to him, but I would very much appreciate all opinions or advise any of you has to offer. Thanx!CarolAnn

 

Re: joining research studies, any opinions?

Posted by Adam on December 6, 1999, at 15:46:15

In reply to joining research studies, any opinions?, posted by CarolAnn on December 6, 1999, at 14:54:55

I've participated in a number of research studies. In some I was a "normal", and was essentially selling my
body to science (not a bad way to get some extra money!). But I have also been in two studies where I was
seeking novel treatments for depression or OCD. Both have been extremely positive experiences.

For the OCD study, I was on my own. For the depression/drug study, I should have spoken to my doctors about
it, but I didn't. I tapered off my old medication and informed them after the fact. This actually caused a
bit of friction and misunderstanding, and led to a couple irate phone calls, where doctors/therapists were
upset about not being properly informed and so on. I had to smooth some ruffles by putting the responsibility
squarely on my shoulders.

I think studies can be a great thing, but you are making a very good decision speaking to your doctor about
it. I don't know why I didn't. There can be risks, of course. Be sure you read all the fine print. You
do put yourself in a somewhat unique position when you participate in a study, and some people aren't
comfortable with the legal aspects.

I honestly felt, in both cases, like I didn't have much to lose by trying. I think I was right.


> Just found out there is a Clinical Research facility here in Orlando that is currently screening for participants, in various Antidepressant trials. I'm thinking about trying to get in one of the studies(particularly one on patients who have not responded to any past medications). I see my Pdoc tomorrow and am going to mention it to him, but I would very much appreciate all opinions or advise any of you has to offer. Thanx!CarolAnn

 

Re: joining research studies, any opinions?

Posted by Noa on December 6, 1999, at 21:18:57

In reply to Re: joining research studies, any opinions?, posted by Adam on December 6, 1999, at 15:46:15

Adam, just out of curiosity, did you find a medication from either of these studies that you decided to use when they came to market?

 

Re: joining research studies, any opinions?

Posted by Adam on December 6, 1999, at 22:40:25

In reply to Re: joining research studies, any opinions?, posted by Noa on December 6, 1999, at 21:18:57

The OCD study actually was drug-free, and was designed to look at the effects of behavioral therapy
on brain metabolism in patients with OCD.

The depression study involves the use of transdermal selegiline as an antidepressant. I'm still in
the study. I guess you could say I've found a drug that I may use once the study is over. Selegiline
is already on the market, but is not available commercially in a patch. It is my sincere hope that
commercially available patch-delevery systems for selegiline (and maybe other MAOIs) arrive soon.


> Adam, just out of curiosity, did you find a medication from either of these studies that you decided to use when they came to market?

 

Re: joining research studies, any opinions?

Posted by Noa on December 7, 1999, at 2:55:27

In reply to Re: joining research studies, any opinions?, posted by Adam on December 6, 1999, at 22:40:25

Is the advantage of a patch delivery system a more constant, consistant flow of med into one's system? Is ther a future for patches in other psychmeds?

 

Re: joining research studies, any opinions?

Posted by jamie on December 7, 1999, at 3:43:41

In reply to joining research studies, any opinions?, posted by CarolAnn on December 6, 1999, at 14:54:55

> Just found out there is a Clinical Research facility here in Orlando that is currently screening for participants, in various Antidepressant trials. I'm thinking about trying to get in one of the studies(particularly one on patients who have not responded to any past medications). I see my Pdoc tomorrow and am going to mention it to him, but I would very much appreciate all opinions or advise any of you has to offer. Thanx!CarolAnn

Pro:
Possibility of getting on a drug that works.
Free evaluations and tests.
Free follow-up.
Free medicine.
Encouragement to stay with treatment. We often quit early due to side effects. Maybe the dedication to endure has merit.

Con:
If the drug works, maybe it's not available when the trial is finished.
Might get stuck with a palcebo. Not cool if you're in desperate need of relief, unless of course you have a placebo effect.
Drug might not work, have intolerable side effects, or make things worse.
No options of adding augmentors, combinations, or side effect remedies.

 

Re: joining research studies, any opinions?

Posted by Kev on December 7, 1999, at 8:36:48

In reply to joining research studies, any opinions?, posted by CarolAnn on December 6, 1999, at 14:54:55

Carol Ann,

It is a calculated risk...Insofar as you don't wind up in the placebo group (in which case, the whole affair will have been a royal waste of time), well, you know how sometimes you read drug monographs or summaries of clinical trials and see something like "Agent X caused serious or fatal (...) reactions in y/100 subjects"? That could be you. While I suppose that someone has to volunteer for these things, I wouldn't.

Regards,

-Kev

 

Re: joining research studies, any opinions?

Posted by Adam on December 7, 1999, at 9:39:13

In reply to Re: joining research studies, any opinions?, posted by Noa on December 7, 1999, at 2:55:27

If I understand correctly, transdermal delivery of selegiline has the
following advantages over oral delivery:

-More even dosing (mostly relevant to side-effects of metabolites).

-Preferential pharmacokinetics: First-pass metabolism is avoided (there
is very little metabolism of selegiline in the skin compared to the gut)
and so the effective dose of the parent compound is increased. Hence,
you get more l-selegiline/mg (and less overall metabolite production;
since two of the metabolites of selegiline are amphetamines, this is
probably a Good Thing (TM))

-No dietary restrictions: Somehow monoamine oxidase in the intestinal
lining is not sufficiently inhibited to prevent the breakdown of
tyramine when selegiline is delivered transdermally. I have a feeling
the lining of blood vessels in the intestinal wall allows selegiline to
pass in only one direction, outside to inside. I've eaten and drunk
copious amounts of forbidden foods, and have had absolutely no
problems related to b.p.

The only disadvantage I can think of is I have to stick this little
thing to myself every day. I prefer swallowing a pill, but it really
isn't a big deal.

> Is the advantage of a patch delivery system a more constant, consistant flow of med into one's system? Is ther a future for patches in other psychmeds?

 

Re: joining research studies, any opinions?

Posted by Adam on December 7, 1999, at 9:46:49

In reply to Re: joining research studies, any opinions?, posted by jamie on December 7, 1999, at 3:43:41

I think everything you have listed here can be true of a clinical trial, but is not
always true. That's why it's good to get all the info. you can about joining and
to consult with your doctor.

For example: In the selegiline study I am participating in, I had a six-week double-
blinded portion, which has been followed by a six-month open-label portion, which
meant that even if I got the placebo for the first six weeks, I was guranteed the
active agent once that period was over. This did turn out to be an endurance test,
and if the reward had been a drug that didn't work for me, yes, it would have been a
big, probably 2 1/2 month waste of time.

But, since my response to every other antidepressant I had tried had been so
dissapointing, I found the risks to be worth the potential benefits. I was
right. You could be too.

> > Just found out there is a Clinical Research facility here in Orlando that is currently screening for participants, in various Antidepressant trials. I'm thinking about trying to get in one of the studies(particularly one on patients who have not responded to any past medications). I see my Pdoc tomorrow and am going to mention it to him, but I would very much appreciate all opinions or advise any of you has to offer. Thanx!CarolAnn
>
> Pro:
> Possibility of getting on a drug that works.
> Free evaluations and tests.
> Free follow-up.
> Free medicine.
> Encouragement to stay with treatment. We often quit early due to side effects. Maybe the dedication to endure has merit.
>
> Con:
> If the drug works, maybe it's not available when the trial is finished.
> Might get stuck with a palcebo. Not cool if you're in desperate need of relief, unless of course you have a placebo effect.
> Drug might not work, have intolerable side effects, or make things worse.
> No options of adding augmentors, combinations, or side effect remedies.

 

Re: joining research studies, any opinions?

Posted by mary on December 7, 1999, at 22:26:21

In reply to Re: joining research studies, any opinions?, posted by Adam on December 7, 1999, at 9:46:49

If I had never enrolled in an investigational study for long time use of Paroxetene years ago, I'm fairly certain I would not be here today. For years, I had tried AD after AD with little and usually no relief. Most often, the only effect was drymouth, constipation and weight gain. That Paxil study(effects of long term use of Paroxetine) saved my life. While I was in that study I had relief from depression and suicidal feelings for the first time in six years. Hope for a life did exist. This study took place long before Paxil was available at your local drug store. I doubt I would have lasted that long.

An important part of that trial was that I would definitely receive the medication. No placebo was part of the study. There were weekly visits at the onset, then monthly checkins, so much support from the drug study personnel, along with my regular psychotherapy sessions. In addition, there were scheduled physicals with yearly eye exams and x-rays. Good or bad for me (depending on whether paxil was the precipitate), a routine study x-ray one year after being on Paroxitene showed a "shadow" which on further medical investigation, and all paid for by the drug company, spelled doom for my continued participation in the study. 'Course the worry I had to endure could have been caused by the drug. Bottom line, though, the biopsy results identified a sarcoidosis and I was ABRUPTLY dropped from the study-no compassionate continuation of medication and very little concern for tapering off the medication. Nor did the study people provide any support for additional medication possibilities. Being deprived of that "life-saving" medication was quite devastating at the time. Prozac came on the market about 6 long months later and helped to control the depression for quite some time as long as I didnt dwell on the lack of sexual satisfactions.

That drug study, partially successfully and partially a failure, bought precious time and existence for me. If nothing were working for me now and if I had the assurance that I would actually get the antidepressant, there's no doubt in my mind that I would participate in such a study again. As every one else has said, read the fine print and be sure you get the drug.

A similardrug study was offered in RI area for recalcitrant depression (sounds evil to me) but it involved Zoloft vs. Prozac and some other drug (cant remember which maybe a placebo). Since I had already been on both of those drugs, I didnot inquire any further. I wonder if this is a regional study of the same drugs.

At any rate, good luck.

Mary


 

Re: joining research studies, any opinions?

Posted by torchgrl on December 8, 1999, at 15:14:58

In reply to joining research studies, any opinions?, posted by CarolAnn on December 6, 1999, at 14:54:55

I agree that you should find out as much as you can about the study before you start, and also involve your doctor in the decision. I'm currently involved in a trial using Reboxetine. The only placebo factor was that for one week, you'd possibly be getting one, but for the rest of the study you'd definitely get Reboxetine. That combined with the fact that I'd been waiting and waiting for Reboxetine to be released in the U.S., and that I have no health insurance, made it a worthwhile risk to me, particularly since my alternative was to begin the mix-and-match routine. Although I haven't found Reboxetine to be the Holy Grail I'd hoped it would be, it hasn't left me completely without relief, or with unendurable side-effects, plus I've had enough blood tests, EEGs, and soon an MRI, so that if there's anything else horribly wrong with me, we'd find it out, all without my having to finance it.


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