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Author Topic: If starting meds scares you, please read post  (Read 3312 times)

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Offline Cojo

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  • Posts: 196
If starting meds scares you, please read post
« on: November 11, 2011, 12:05:02 PM »
I feel compelled to reach out to folks who may be terrified and anxious about starting meds as I was at that point 8 weeks ago. I was obsessing over the capacity for huge side effects, imaging the worst and hoping for the best.
Early October (6th) I started Truvada and Isentress. I remember vividly waiting for the clock to strike 9am so I could put my first two down. Couldn't wait. At 855, down they went. Emotionally, I tried to stay focused on gratitude; these miracle drugs would do for me what couldn't be done by the pioneers(esses) in the early days and they are the drugs that millions upon million on the planet would do anything to access but can't.
Down they went. I felt a little flushed and spacey for about half a day. Next day, slight tummy upset, then nothing. I kept waiting for the wild vomitting, uncontrollable diarrhea, headaches. Nothing.
Ten days in I was feeling off, but I think that their was a lesson in that. As a human being, I will feel off. HIV is not in direct line of sight to everything! We sneeze, have sore throats, are tired and have headaches occasionally...just like everybody Else.
I wish I had more fully taken to heart all of the posters on here who told me all shall be well, just give it time. I guess we all need our own journey to get it.
So if you are in that spot, I reach out to you and say be still and have faith that all shall be well - it is for me!

Just a footnote: this post is not to negate that some folks do have some miserable side effects and they post them on here as well - my post is not to honor that fact, just to give another fact.

Peace
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD
Aug 2014 swap out Isentress for Tivicay

Offline WillyWump

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  • Posts: 7,177
  • your ramblings bore Yamaguchi Kitteh
Re: If starting meds scares you, please read post
« Reply #1 on: November 11, 2011, 07:43:30 PM »
Excellent post Cojo. Thanks for sharing this.

-Will
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline SANJUANDUDE

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  • Posts: 125
Re: If starting meds scares you, please read post
« Reply #2 on: November 11, 2011, 08:57:23 PM »
yes, excellent post. 

Atripla kind of did the same thing, but for a longer period of time.

I don't know that I really consider these drugs "miracle drugs", since I do believe that they do other negative things to your body.  Although, I know some people who have been taking them for 15 years and their kidney and liver counts are still fine.

http://timehasshownme.blogspot.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline WillyWump

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  • your ramblings bore Yamaguchi Kitteh
Re: If starting meds scares you, please read post
« Reply #3 on: November 11, 2011, 09:22:11 PM »

I don't know that I really consider these drugs "miracle drugs", since I do believe that they do other negative things to your body. 


The miracle comes from the fact that these drugs have allowed us to live near normal/normal life spans, compared to the 80's when people were told to go home and die.

-W
POZ since '08

Last Labs-
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline scottieman

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  • Posts: 58
Re: If starting meds scares you, please read post
« Reply #4 on: November 11, 2011, 10:41:02 PM »
Cojo,

Thanks for that post, I've been nervous as hell since my diagnosis.  I tested negative on August 27th and then ended up testing positive in the third week of October.  My CD4 was 621 at 21% and a viral load of 21,000  The Dr. told me that if I were to start meds now, I would be able to retain most of the integrity of my immune system.  So I did the only thing I know how to do and that was search for information.  This site was a relief to find, it answered most all my questions in one place.  I decided I would start meds, and today was my first dose of Complera.  I too am hoping for the best as far as side effects go, and will be staying close to home this weekend just in case.  I do believe that swallowing the first pill, was the best step I could take for me.  Thanks for sharing your experience, I hope I am as lucky as you in regard to the side effects.

Best,
Scott
August 19, 2011 Negative Oral Swap
August 30-September 4, 2011 (Thought Strep throat really sero-conversion)
October 5th, HIV Diagnosis
October 22 labs, CD4 619, VL 21,000 21%
November 13th, Started Complera
January 9th, Labs CD4 631, VL-UD 28%
March 28th Labs CD4 610, VL-UD 31%
July 2nd CD4 792, 34% VL-75
August 7th, 2012 CD4 899, 35% VL-97
September 17th, 2012 CD4 989, 33% VL-27
November 8, 2012  CD4 850, VL-UD, 39%
December 6, 2012 CD4 849, VL-UD, 39%
April 2, 2013 CD4 904, VL-UD, 33%
July 17, 2013 CD4 988, VL UD, 38.2%

Online tednlou2

  • Member
  • Posts: 4,884
Re: If starting meds scares you, please read post
« Reply #5 on: November 12, 2011, 12:44:00 AM »
Thanks for posting.  Indeed, they are miracle drugs.  

I've often wondered whether most of us (including myself here) fear these drugs irrationally.  We often get prescribed many other medications from depression to blood pressure to pain meds.  And, most of us take them without much concern at all--even knowing we we may have to take some of those the rest of our lives.  I even wrote into to one of the online docs whether HIV meds are really any more toxic than the meds I listed above.  I got a yes and no answer.  So, I don't know, but I do know I will take other meds without ever reading the side effects or wondering if they will do more harm than good in the long run.  

Modified to add:

I think the mental hangup (at least for me) is knowing that once you start, you now have to take these meds for life in order to stay alive.  So, I do wonder how much is actually fearing the side effects of the meds vs the fear that this now means my immune system can no longer do the job on its own.  And, even though it is a blessing to have the meds, it is still hard on the psyche.  I've been living with HIV for at least 10 years and have known my status for 3 years.  I fear that I've become use to having this virus without the need for meds yet, that when I do need them, it is going to be a big deal.  I try to tell myself all the time that day is coming, so don't be all dramatic about it.  And, I certainly plan to start while it is still an option and not out of dire necessity. 
« Last Edit: November 12, 2011, 12:58:31 AM by tednlou2 »

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: If starting meds scares you, please read post
« Reply #6 on: November 12, 2011, 01:45:10 AM »
Thanks for your reassuring post Cojo. It most definitely does help people who are anxious about starting meds.


I think the mental hangup (at least for me) is knowing that once you start, you now have to take these meds for life in order to stay alive. 

That's my mental hangup as well. Although, it is a silly way to think given that I probably would have to go on treatment sooner rather than later.
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline wolfter

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Re: If starting meds scares you, please read post
« Reply #7 on: November 12, 2011, 05:24:09 AM »

I think the mental hangup (at least for me) is knowing that once you start, you now have to take these meds for life in order to stay alive. 

This is a constant comment I read here.  Perhaps if you put it in perspective of all the other things you have to do every day for the rest of your life, it'll alleviate the fears.  If you want to maintain good oral hygiene, you have to brush and floss several times a day for the rest of your life.  The list goes on and on. 

It's almost like accepting the stigma that associated with HIV. 

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline emeraldize

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  • Posts: 3,348
Re: If starting meds scares you, please read post
« Reply #8 on: November 12, 2011, 10:10:17 AM »
Hey Wolfie,

Your dental hygiene analogy reminds me of a printed magnet a dentist of mine used to hand out. It read:

Only Brush and Floss the Teeth You Want to Keep!

It had a smiling bunny with buckteeth on it.  So, maybe some HIV med magnets would help.

Pre-start and post- as compliance can be a challenge for some.

Em

Offline wow1969

  • Member
  • Posts: 208
Re: If starting meds scares you, please read post
« Reply #9 on: November 14, 2011, 12:09:48 AM »
I never had the side effects that everyone fears ...

I've been on Atripla for about 2 years ..

My side effects ..

1. I feel good
2. I have really really vivid dreams ... No, not the night terrors that others report ... I have HIGHLY EROTIC dreams in full color and sound ...
3. After this long, I still get a slight, pleasant buzz from taking the meds ...

That's it for me :-) ... Kinda like my side effects, especially number 2.

Offline scottieman

  • Member
  • Posts: 58
Re: If starting meds scares you, please read post
« Reply #10 on: November 14, 2011, 06:47:57 AM »
Hey WoW,

Now those are some side effects I might enjoy!  LOL  I am on day 4 and so far no side effects at all...I had hyped myself up for nothing so far it seems.  Fingers crossed it stays this way.

Scott
August 19, 2011 Negative Oral Swap
August 30-September 4, 2011 (Thought Strep throat really sero-conversion)
October 5th, HIV Diagnosis
October 22 labs, CD4 619, VL 21,000 21%
November 13th, Started Complera
January 9th, Labs CD4 631, VL-UD 28%
March 28th Labs CD4 610, VL-UD 31%
July 2nd CD4 792, 34% VL-75
August 7th, 2012 CD4 899, 35% VL-97
September 17th, 2012 CD4 989, 33% VL-27
November 8, 2012  CD4 850, VL-UD, 39%
December 6, 2012 CD4 849, VL-UD, 39%
April 2, 2013 CD4 904, VL-UD, 33%
July 17, 2013 CD4 988, VL UD, 38.2%

Offline bufguy

  • Member
  • Posts: 161
Re: If starting meds scares you, please read post
« Reply #11 on: November 14, 2011, 10:48:34 AM »
Posts like this are important because there are many of us that don't have any side effects and tolerate the meds extremely well. Those just starting out should know that. I've been on atripla for 3.5 years and except for 1 week I've had little or no problems. I have been undetectable, my lipids and cholesterol are perfect and I have no sleep issues.
I do remember that first day starting though, knowing that was the start of a lifetime commitment.
It is amazing though that just 20 years ago an HIV diagnosis was a death sentence, and not to trivialize, but for me at this point in my life it is just a mild inconvenience taking 1 pill, once a day.
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 scottieman

  • Member
  • Posts: 58
Re: If starting meds scares you, please read post
« Reply #12 on: November 16, 2011, 06:37:17 AM »
Well I am now on day 5 of my meds, and so far not one side effect.  I am very very happy.  I take Complera, with a meal in the evening.

Scott
August 19, 2011 Negative Oral Swap
August 30-September 4, 2011 (Thought Strep throat really sero-conversion)
October 5th, HIV Diagnosis
October 22 labs, CD4 619, VL 21,000 21%
November 13th, Started Complera
January 9th, Labs CD4 631, VL-UD 28%
March 28th Labs CD4 610, VL-UD 31%
July 2nd CD4 792, 34% VL-75
August 7th, 2012 CD4 899, 35% VL-97
September 17th, 2012 CD4 989, 33% VL-27
November 8, 2012  CD4 850, VL-UD, 39%
December 6, 2012 CD4 849, VL-UD, 39%
April 2, 2013 CD4 904, VL-UD, 33%
July 17, 2013 CD4 988, VL UD, 38.2%

Offline Billy B

  • Member
  • Posts: 374
Re: If starting meds scares you, please read post
« Reply #13 on: November 16, 2011, 11:04:42 AM »
Good post Cojo! I was scared to start as well but the good people here reassured me it would be OK and it was.
I am feeling a bit off today but it is from a pinched nerve in my neck from cutting down a tree and splitting the wood this past weekend. I am glad to be here to enjoy the perils of getting older.
Peace,
Billy
VL 4420 CD4 340 CD4% 24   3/15/10 Started I&T
VL  UD   CD4 340 CD4% 26.5 05/13/10
VL  UD   CD4 360 CD4% 27.1 08/3/10
VL  UD   CD4 310 CD4% 28.4 11/22/10
VL  UD   CD4 420 CD4% 27.9 02/11/11
VL  UD   CD4 370 CD4% 26.4 06/08/11
VL  UD   CD4 360 CD4% 27.7 09/23/11
VL  UD   CD4 370 CD4% 28.3 01/20/12
VL  UD   CD4 430 CD4% 28.8 05/11/12
VL  UD   CD4 370 CD4% 28.1 09/07/12
VL  UD   CD4 390 CD4% 32.3 03/14/13

Offline aztecan

  • Member
  • Posts: 5,398
  • 29 years positive, 57 years a pain in the butt
Re: If starting meds scares you, please read post
« Reply #14 on: November 17, 2011, 12:54:22 AM »
Hey Cojo,

Thanks for including the comment about not all things being HIV related.

At my age, its a toss up - it could be HIV, it could be the effects of aging or or it could be effects of a misspent youth (which I look back upon fondly and, sometimes, in absolute horror. :o)

Glad you are doing well.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline TexasPOZ

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Re: If starting meds scares you, please read post
« Reply #15 on: November 23, 2011, 06:26:31 PM »
I'm glad you posted your experience Cojo. I don't have any side effects from my meds either.

Offline TonyDewitt

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Re: If starting meds scares you, please read post
« Reply #16 on: December 20, 2011, 07:58:11 PM »
I'm loving the references about HIV transitioning from a 'go home and die' death sentence to a manageable (and often) pill a day existence (with all due sympathy to those who do suffer severe side effects). Considering that transition, we really have come a long way; let's hope the future is as relatively advanced! Imagine one day all of us chatting about how we had to take today's medications as if they were primitive! Wouldn't that be a laugh riot! Here's to no one having to suffer with the effects of the medications ever!

Offline phildinftlaudy

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Re: If starting meds scares you, please read post
« Reply #17 on: December 20, 2011, 08:10:10 PM »


I think the mental hangup (at least for me) is knowing that once you start, you now have to take these meds for life in order to stay alive. 

I agree that thinking about meds this way can cause anxiety -
I guess a crazy way to put it into perspective is that there are a lot of things we have to do on a daily basis for the rest of our lives in order to live ----- such as eat (which can cause negative side effects in many cases, drink water, breathe, sleep, etc) --- I guess that I have kind of an unorthodox way of viewing things at times - but thinking of meds this way allows me to avoid much of the anxiety that I otherwise might have had.
September 13, 2008 - diagnosed +
Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
12/09  540    30    60   
12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
05/12  1,241  47  <20
08/12   780    37  <20
11/12   549    35  <20
02/12  1,102  42  <20
11/12   549    35  <20

Offline jkinatl2

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Re: If starting meds scares you, please read post
« Reply #18 on: December 20, 2011, 08:35:50 PM »
Whats kept me going since 1993 is thinking that I just have to hang around for the next new thing. Back then, it was meds that weren't as toxic.

For people today, the next thing might be a pill you take once a week. It might be a cure. But it's easier to swallow pills today if you don't feel like it's an open-ended perpetual, unchangeable part of your life.

It likely will not be, at least not in the way we view meds today.
"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

Online leatherman

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  • Google and HIV meds are Your Friends
Re: If starting meds scares you, please read post
« Reply #19 on: December 20, 2011, 09:28:15 PM »
if you don't feel like it's an open-ended perpetual, unchangeable part of your life.
I have to open with the caveat that besides AZT for 9 months, I really started seriously taking ARVs when I was in the hospital with PCP, so my experience didn't really give me time to debate when or even if I would go onto meds.

With that said, I just don't understand the issue about going onto HIV meds "for a lifetime". I never hear those statements from people starting high blood pressure, cholesterol meds, psychotropic meds, or even insulin for that matter. The only people I hear crying about taking meds to stay alive are some of the people who tested HIV+ enough in advance that they had the luxury to choosing when and what to take.

With so many people (in America) on daily prescriptions (how many pharmacies are near your home? I can name over a dozen within 3 miles of my houses - and I live in rural SC LOL), I just don't understand this HIV-medication phobia that people have.  :o Oh well, go figure. LOL
leatherman (aka mIkIE)


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

Offline TonyDewitt

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Re: If starting meds scares you, please read post
« Reply #20 on: December 20, 2011, 10:07:05 PM »
Amen LeatherMan - excellent examples - conversely, people with maladies that can't be medicated would jump at the chance to take a pill everyday to have a handle on their disorder, and wouldn't whine. A popular HIV doctor / male model who won the Mr. Leather contest (+ve since 1987) put it this way: if you've got to be +ve, this is a great time to be +ve.

Online tednlou2

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Re: If starting meds scares you, please read post
« Reply #21 on: December 21, 2011, 02:22:25 AM »
I have to open with the caveat that besides AZT for 9 months, I really started seriously taking ARVs when I was in the hospital with PCP, so my experience didn't really give me time to debate when or even if I would go onto meds.

With that said, I just don't understand the issue about going onto HIV meds "for a lifetime". I never hear those statements from people starting high blood pressure, cholesterol meds, psychotropic meds, or even insulin for that matter. The only people I hear crying about taking meds to stay alive are some of the people who tested HIV+ enough in advance that they had the luxury to choosing when and what to take.

With so many people (in America) on daily prescriptions (how many pharmacies are near your home? I can name over a dozen within 3 miles of my houses - and I live in rural SC LOL), I just don't understand this HIV-medication phobia that people have.  :o Oh well, go figure. LOL

When I found out in the hospital that I was being given an HIV med (would later learn sustiva mono-therapy), I don't remember feeling a bunch of anxiety about it.  I guess I was already stunned by an AIDS diagnosis and I was very sick, so I just wanted whatever was necessary to feel better.  Even when my first appointment came at the HIV doc, I was fully ready to restart HIV meds and don't remember anxiety about it.  Actually, I was very worried about not being on HIV meds.  Obviously, many factors changed that, as I'm still not on meds.  For the newer people reading this, my numbers are still above 500.  I'm not putting off meds past the recommended point.  And, the AIDS dx was an "artificial" one.   

 


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