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Author Topic: To participate in a clinical trial or not ?  (Read 566 times)

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Offline an92

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To participate in a clinical trial or not ?
« on: February 15, 2020, 03:35:21 am »
My doctor phoned me yesterday and asked if I was interested to participate in a clinical trial starting next month to test the new drug combination doravirine/islatravir.
Itís a new two drug combination, with doravirine already FDA approved, and the other drug being an experimental drug. This has only been tested in animals so far, so for me that doesnít sound too promising.
I think you might know Iím prone to anxiety, so I immediately thought maybe itís not a good idea. Iím settled in on my current regimen: tivicay and descovy (3 drug combination).
The doctor said that a switch to a two drug regimen could be good to prevent long term side effects. Right now I donít have any side efffects on my current treatment and my kidneys and liver are working fine.
Also my husband told me not to do it, because Iíve got anxiety and it could make it worse, constantly worrying if the new combination is working, if Iím still undetectable, if if if .... 
I donít particularly want to be a test subject ďguinea pigĒ that could potentially have new side effects both long term and short term. I prefer if others test the drugs first and then when they are shown to be effective I could consider a switch. Does that make me selfish? I donít care, Iím in it for the long run. I want my life with HIV to be as comfortable as possible.
Just putting thoughts out there.

Offline Jim Allen

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Re: To participate in a clinical trial or not ?
« Reply #1 on: February 15, 2020, 03:51:31 am »
Hiya,

End of the day, it's your choice of course.
 
It does not make you selfish. Look you have had a rough time and you are now finally in a good place with your treatment and also with your anxiety, I hope. Also, you have a partner, who is currently safe from HIV thanks to your remaining UD on a proven treatment.

I can appreciate these are things you don't want to gamble with, I would not do it either, I'm happy with my meds and I have young children so don't want to risk fucking things up health-wise.

Maybe I am out of date, but I thought they were not looking for new patients, maybe a slot opened up though.

Here is some information on the drug mentioned. https://aidsinfo.nih.gov/drugs/609/islatravir/0/patient
 
Jim
« Last Edit: February 15, 2020, 03:57:32 am by Jim Allen »
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Offline harleymc

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Re: To participate in a clinical trial or not ?
« Reply #2 on: February 15, 2020, 09:33:52 pm »
Two different issues

If it hasn't yet been tested on humans this is a trial to see what harms it does or doesn't do. The tests on effectiveness only follow from these stage 1 trials. As a trial of safety you'd have to wonder why you have to be taken off stable treatment rather than add in the Investigational treatment to the stable treatment.

On the other issue of anxiety, if it is causing you issues in your life. Get it treated so you can enjoy your time on this planet.

Offline Grasshopper

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Re: To participate in a clinical trial or not ?
« Reply #3 on: February 16, 2020, 04:19:18 am »

I think you might know Iím prone to anxiety, so I immediately thought maybe itís not a good idea. Iím settled in on my current regimen: tivicay and descovy (3 drug combination).
 
Also my husband told me not to do it, because Iíve got anxiety and it could make it worse, constantly worrying if the new combination is working, if Iím still undetectable, if if if .... 

I donít particularly want to be a test subject ďguinea pigĒ that could potentially have new side effects both long term and short term.

I think that you have answered your question yourself.

Selfpreservation is currently your first concern...if you think/feel that participating will make you crazy, then DON"T

 


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