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Author Topic: Scared and confused about meds  (Read 3527 times)

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Offline Paladin

  • Member
  • Posts: 7
Scared and confused about meds
« on: April 25, 2013, 10:53:58 PM »
It's been 3 days since I received my diagnosis. I have contacted my physician, scheduled an appointment with an hiv specialist. Been online ( where information can be doubtful ) and have read pages and pages of information on reliable sites.  The biggest problem/concern I have is becoming knowledgable about meds before going to the dr. I have insurance and can start meds immediately, but I admit to being scared of the side effects. Am I being to worried about this. It's a cliche that I know many positive people, but since I haven't told any tone yet I can't ask them. Can anyone here help?
The past is only meaningful if you have a future

Offline mecch

  • Member
  • Posts: 13,406
  • red pill? or blue pill?
Re: Scared and confused about meds
« Reply #1 on: April 26, 2013, 12:44:54 AM »
Sorry about your diagnosis. 

Its only been 3 days. You don't have to learn everything instantly. You don't even know your counts.  Before you jump the gun there's info the doc will get on you and then the doc will recommend what drugs and when you might need them.. Take down THAT info and look more for that stuff specifically, in your info searches. That will be enough extra information for now.

Bring that info into this forum and people can discuss it more with you here, too, of course...
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline jkinatl2

  • Member
  • Posts: 6,007
  • Doo. Dah. Dipp-ity.
Re: Scared and confused about meds
« Reply #2 on: April 26, 2013, 12:51:00 AM »

I will be the first to admit that the learning curve regarding HIV is pretty steep. But if it's at all possible, try to relax. You don't have to know everything today, or tomorrow, or next week. After testing positive, your doctor might refer you to an infectious disease specialist, though many doctors are comfortable treating new/early HIV infections these days.

You will get blood drawn and find out your  cd4 count and viral load. Your doctor might also do a resistance test, to see if the strain of virus is resistant to any classes of medication. Depending on these test results, you might want to hold off on meds until your numbers indicate you should start. Some people find it very empowering to start right away, and some research indicates that this can be a good idea.  Adherence is the major issue there. IMHO, the time to start is when YOU determine that you are ready to adhere to a drug regimen with as close to 100% compliance as possible.

As far as side effects are concerned, most HIV drugs will offer at least some temporary side effects. They often resolve themselves after a few weeks. Some drugs can cause psychological effects, and if you have a history of, of example, major depressive disorder, that might be a red flag to avoid those drugs. Being open and honest with your doctor is crucial. I might go so far as to say that your relationship with your doctor is arguably the most important factor in living (and thriving) with HIV.

As for resources, this site remains the best on the internet. The LESSONS sections are meticulously researched and the level of knowledge here is top-knotch. This site isn't just an aggregate of information from other sites. It's a well-sourced fount of information. You really have come to the right place.

Believe it or not, things are going to be OK. Like every life change, it's an adjustment. But you are more than equal to the task. More importantly, you are not alone.

I am sorry you had to find this place - but I am glad you did.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

Welcome Thread

Offline mikeyb39

  • Member
  • Posts: 980
Re: Scared and confused about meds
« Reply #3 on: May 04, 2013, 08:04:32 AM »
Sorry about your diagnosis.  The one word of advice is to not let your doctor decide your medication.  I started out on Atripla like most newbies do and it did me in with the side effects.  There are now two other one a day pills to choose from.  Research your options before jumping in

As a disclaimer, not everyone has bad side effects to Agrippa, but a lot do
11/02/2010  cd4-251, vl-591000
12/09/2010  started Atripla
02/18/2011  cd4-425, vl-800
06/10/2011  cd4-447, vl-70
10/10/2011  cd4-666, vl-80
01/05/2012  swiched med (prezista,norvir ,isentress, )
02/10/2012  cd4-733, vl-UD  Viread removed
06/10/2012  cd4-614, vl-UD
12/14/2012  cd4-764, vl-UD
09/01/2013  cd4-785, vl-UD
03/06/2014. cd4- 1078, VL-UD
09/05/2014  cd4-850 , VL-UD
09/05/2014 switched meds isentress, prezcobix -still only two antivirals
10/14/2015  cd4-600 , VL-UD

Offline bufguy

  • Member
  • Posts: 189
Re: Scared and confused about meds
« Reply #4 on: May 07, 2013, 01:29:38 PM »
The resources here are great and med options are better then ever. I would read up and then ask your HIV specialist questions. My Doc was an incredible guide for me.
I'm on Atripla and its been great...No side effects, undetectable with a CD4 of 1040. Plus the 1 pill per day makes it an easy regimen
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline MiniPozToyota

  • Member
  • Posts: 206
Re: Scared and confused about meds
« Reply #5 on: May 31, 2013, 11:23:19 PM »
I personally wouldn't start treatment until your CD4 is below 500, if it is already then I would start some type of treatment, like a lot of people have been saying they have a lot of different one a day pills out now, the number used to be 300 to start treatment now its 500 and this is coming from a well known hospital in DC, But I started on med Atripla and been on is ever since now with higher cd4 and undect. I take my pill every night at 10pm. I normally wake up about 455am to 545am somedays for work with hardly no effects, also if you have a iphone or smart phone they have certain apps to help set reminders to help you keep track. Pm me if you need anything.
April 2010- tested neg.
April 1 2011 -  CD4 346 VL 46856 22%
July 27 2011- Started Atripla
(Meds are good) needed more space to update been UD now for three years. Current down below
Jun 5 2014 - CD4 704 VL UD % 44.0

Offline Andy Velez

  • Global Moderator
  • Member
  • Posts: 32,271
Re: Scared and confused about meds
« Reply #6 on: June 03, 2013, 09:55:17 AM »
Hi Paladin,

Welcome. Yah, we're sorry you need to be here but we're also glad you found your way to this site. You've already received some of the caring and informed advice available here.

First of all, you can take your time making decisions, including about whom to tell and when. Don't feel rushed about that.

As to your health, gradually you're going to learn a lot about how to protect your health. Developing a good working partnership with your doctor is important. You may have lots of questions coming up between appointments. Write them down so that you don't have to depend on your memory when you speak with your doctor. Obviously HIV is very important but with time you are going to see that your life is not only going on, it's also going to continue to be about a lot more than HIV.

And remember, you're always welcome here to discuss anything that's on your mind.

Andy Velez

Offline Fisher

  • Member
  • Posts: 290
Re: Scared and confused about meds
« Reply #7 on: June 06, 2013, 12:42:46 PM »
Hey Paladin:

Three days in, you are only just beginning. At times, there is a chance that you may feel uncomfortable emotions and have thoughts the create degrees of fear and anxiety. It is normal. It is normal to panic and go a bit crazy. But trust that time heals. You will pass though them. You will be ok, make it though.

Trust in the words of the guy's advice above. Solid advice.
- fisher
06/15 CD 365 %24 VL<20
01/15 CD 468 %24 VL<20
09/14 CD 385 %22 VL<20
07/14 CD 391 %20 VLUD
04/14 CD 486 %23 VL<20
11/13 CD 351 %21  VL<20
10/13 CD 390 %16  VL<20
06/13 CD 315 %19  VL 22
02/13 CD 396 %14  VL<20
12/12 CD 392 %13  VL320
11/12 CD 428 %13  VL1200
*Started Meds: Atripla
10/12 CD 427 %11  VL 139000 -- 09/12 CD 408 %13 VL 92928
09/11 CD 745 %27 VL CLOT -- 10/10 CD 863 %29 VL 2782
10/09 CD 597 %30 VL 2537 -- 05/08 CD 809 %28 VL 1504
04/07 CD 797 %25 VL 3558 -- 11/06 CD 720 %28 VL 1214
06/05 CD 731 %25 VL 1575 -- 12/04 CD 1176 %30 VL 1329
01/04 CD 959 %26 VL 1011 -- 11/03 CD 1000 %28 VL 1581
12/02 CD 748 %28 -- 10/01 CD 860 %25
08/00 CD 1022 %28 -- 04/99 CD 854 %27
11/98 CD 899 %28 -- 02/97 CD 1400 %37
11/96 CD 1325  VL <500 -- 09/96 – Western Blot
05/83 – 04/98 - Mon - Pa

Offline DrewEm

  • Member
  • Posts: 67
Re: Scared and confused about meds
« Reply #8 on: June 07, 2013, 02:11:01 AM »
As the guys above hae said, you have to be comfortable with your treatment. Some say you should start on Meds as soon as diagnosed, others say to wait until your CD4 count falls below a certain number. I was hospitalized with several opportunistic infections and a CD<10. I started on Norvir, Truvada and Prezista and three years later it is working for me. It costs me more a month in a deductible versus a single pill treatment but I gladly pay it..


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