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Author Topic: Drug Study  (Read 4369 times)

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Offline orlmale

  • Member
  • Posts: 6
Drug Study
« on: May 17, 2011, 07:03:06 PM »
Hello everyone ...new here and lost. I started a drug study back in June and started getting very depressed and anxious  and not sleeping on the meds when I went back to the study Dr. he gave me xanax which I hate taking puts me to sleep during the day. I felt like days I was losing my mind and just could not function I have decided to stop taking these meds and leave the study. I stopped on 5/12/11 and have a DR. on 5/25/11 I will let them know that day. I hope I made the right decision I was told I could stop the study at anytime. I just could not take the side effects I was having plus I have no clue what the meds are because its was a blind study. I have noticed that my minds more clear the past couple of days. I just scared that maybe I mess up my chances on getting on another drug with less side effects...Has anyone here done a blind study before?

Offline antibody

  • Member
  • Posts: 525
  • "every man thinks his burden is the heaviest"
Re: Drug Study
« Reply #1 on: May 17, 2011, 10:20:59 PM »
Not a drug study I'm in but I am part of a HIV and the Brain study. I would do the same if I was in your shoes. I was prescribed Atripla when I first went on treatment and had to change after a long trail period. The side effects were horrible and made me feel ill and also I couldn't handle the central nervous system side effects. So I'm sure your Doctor will prescribe an alternative med that you can tolerate, mine did.
Timbuk      <50/ 794  CD4 10/06 
                 <50/ 1096 CD4 3/07
                 <40/ 1854 CD4 4/09

Started Atripla  7/14/06
Switched to boosted Reyataz Truvada 3/28/07

*Ask me about Medical Marijuana and how it can help you!*

Offline wolfter

  • Member
  • Posts: 4,398
Re: Drug Study
« Reply #2 on: May 18, 2011, 04:31:13 AM »
First, welcome to the forums.  I have never been in a formal drug study but have been poz so long that those of us who started the first treatments were basically guinea pigs.  I'm sure you're doctors will want detailed information on your side effects (hence there purpose of the study).  There are many combos available so you needn't worry about that issue.  I would assume your doctor will run some additional testing before deciding on your next combo.

Looking forward to hearing more from you.
Greg
productivity breeds content

Offline mecch

  • Member
  • Posts: 11,263
  • red pill? or blue pill?
Re: Drug Study
« Reply #3 on: May 18, 2011, 05:07:07 AM »
Was being on the study the way you accessed medical care?

You will want to get a new test, eventually, to see if you have resistances.  Did you get one to start?
Maybe stopping cold turkey will have a price, maybe not.

Usually these decisions are best made by asking one's doctor how to stop.  Some drugs are not stopped cold turkey.  Why didn't you ask your doctor how to stop this time?  

Nobody needs a doctor's permission to take charge of his/her HIV infection the way that feels right, but one does need medical advice how to do what one wants to do.  

I think this is a key idea for long-term well-being living with HIV, and that you should think about this for the future.  

Welcome to the forum.
« Last Edit: May 18, 2011, 05:09:58 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline edfu

  • Member
  • Posts: 1,084
Re: Drug Study
« Reply #4 on: May 18, 2011, 07:37:00 AM »
I'm having problems understanding how any HAART study today is completely "blind."  You must not understand something.  What's the name of the study?  Does it have a number?  These studies are conducted by the AIDS Clinical Trials Group (ACTG) of the National Institutes of Health and have a number. 

I participated in ACTG 5095 from 2001-2005.  The study had a name, and it was a double-blind, placebo-controlled study, but we knew what the three alternatives were, and we knew what drugs we might be getting (or not getting) in each of the three arms to which we were randomly assigned, but no one knew at the time.  It would not be legal or ethical to conduct a study today without making the participants aware of the possibilities, and you would have to sign an agreement to that effect.     

Can you give us any further info? 
"No one will ever be free so long as there are pestilences."--Albert Camus, "The Plague"

"Mankind can never be free until the last brick in the last church falls on the head of the last priest."--Voltaire

Offline orlmale

  • Member
  • Posts: 6
Re: Drug Study
« Reply #5 on: May 18, 2011, 01:04:15 PM »
Thanks for all the info. I 'll try to answer all questions in this reply: Yes I joined to study for medical care but there is no care just blood test and more meds, It does tell me on the bottles what the meds could be or not be. I guess the main reason I stopped is I have addressed this to the Dr. every time I went about not being able to think clearly, being depressed , not wanting to leave my house, forgetting things.getting a big belly All he would tell me your fine your fine. All  he did say my triglycerides are very high.  I don't know if I made the right choice stopping without talking to him first but I got to the point that I just could not take them anymore and its been almost a week and I just don't know what to do now I am alone unemployed no insurance and losing everything and very scared .....

Thanks again for all the input

Offline leatherman

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  • Posts: 6,067
  • Google and HIV meds are Your Friends
Re: Drug Study
« Reply #6 on: May 18, 2011, 01:21:03 PM »
I just don't know what to do now I am alone unemployed no insurance and losing everything and very scared .....
welcome to the forums and I'm sorry to hear about the problems you're having.

I have a few questions that might lead to a few suggestions that could help you.

First and foremost, are you living in the US? If so, have you contacted an ASO (aids service organization)? Have you applied for Medicaid or food stamps? Depending on how long you've been unemployed and what your resources are, you might be eligible for a lot of social services that could help you out. Medicaid could provide you with medical coverage, and of course food stamps can put food in the cabinets and in you.  ;D You might even be eligible for welfare which could help you financially for a short amount of time.

An ASO might be able to help you with housing/utilities, gaining access to healthcare, getting medications, etc. If you're not connected with an ASO, check for one in your area here (http://directory.poz.com/) or tell us what area you're living in and perhaps someone here and suggest some help for you.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline orlmale

  • Member
  • Posts: 6
Re: Drug Study
« Reply #7 on: May 18, 2011, 02:02:27 PM »
Central Fl area...

Offline leatherman

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  • Posts: 6,067
  • Google and HIV meds are Your Friends
Re: Drug Study
« Reply #8 on: May 18, 2011, 03:45:58 PM »
Central Fl area...
have you already tried any of my suggestions? Have you contacted an ASO?
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline newt

  • Member
  • Posts: 3,877
  • the one and original newt
Re: Drug Study
« Reply #9 on: May 18, 2011, 04:23:54 PM »
Regardless of being in a study, if you have side effects you are entitled to switch combo/stop treatment if this is safe. Switching/stopping and dropping out a study is an important data point.

- matt
"The object is to be a well patient, not a good patient"

Offline orlmale

  • Member
  • Posts: 6
Re: Drug Study
« Reply #10 on: May 18, 2011, 06:09:12 PM »
have you already tried any of my suggestions? Have you contacted an ASO?

Yes, Today I called and have an appointment in July for eligibility.

Offline mecch

  • Member
  • Posts: 11,263
  • red pill? or blue pill?
Re: Drug Study
« Reply #11 on: May 18, 2011, 08:35:53 PM »
Thanks for the clarifications!

Really don't beat yourself up for stopping, since its done now.  It's far more important that you take some of leatherman's advice and start getting yourself into health networks will you will get actual care, as you put it. 

Do you know how long you have been infected?  Any blood information?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline orlmale

  • Member
  • Posts: 6
Re: Drug Study
« Reply #12 on: May 19, 2011, 01:52:32 PM »
test poz 5/5/2009.....
Thanks for the clarifications!

Really don't beat yourself up for stopping, since its done now.  It's far more important that you take some of leatherman's advice and start getting yourself into health networks will you will get actual care, as you put it. 

Do you know how long you have been infected?  Any blood information?

Found out 5/5/2009 .. I don't have any copies of test from the Dr. But I am going to take control and make sure I get the test results for here on ...I have to stopped feeling sorry for myself and take a stand I realize if I don't nobody will ...I know its a mental thing right now and that's where I am seeking help first I need to get my focus back so I can take care of the rest...Well that's where I am at today will see what tomorrow brings..

Thanks again to all who replied it has helped just to be open without judgement ...to bad were not all living in the same place so we could meet....thanks

Offline SunnyFlorida

  • Member
  • Posts: 176
Re: Drug Study
« Reply #13 on: May 19, 2011, 08:11:17 PM »
orlmale,

I'm not far from where you are (Melbourne area) and I have a poz friend who frequents this forum. He swears by the ASO called "Hope and Health Center of Central Florida", especially their HUG-Me program. Had nothing but great experiences there. Check it out!

Hope and Health Center of Central Florida

Offline orlmale

  • Member
  • Posts: 6
Re: Drug Study
« Reply #14 on: May 20, 2011, 03:19:06 PM »
orlmale,

I'm not far from where you are (Melbourne area) and I have a poz friend who frequents this forum. He swears by the ASO called "Hope and Health Center of Central Florida", especially their HUG-Me program. Had nothing but great experiences there. Check it out!

Hope and Health Center of Central Florida

Thank you I have contacted them for help :)

Offline SunnyFlorida

  • Member
  • Posts: 176
Re: Drug Study
« Reply #15 on: May 21, 2011, 09:14:43 AM »
Thank you I have contacted them for help :)

You're welcome, and good luck!

Offline mecch

  • Member
  • Posts: 11,263
  • red pill? or blue pill?
Re: Drug Study
« Reply #16 on: May 21, 2011, 03:41:41 PM »
How are you doing, this weekend?
“From each, according to his ability; to each, according to his need” 1875 K Marx

 


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