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Author Topic: My 2 cents on meds.  (Read 2722 times)

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Offline dingowarrior

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  • Posts: 191
My 2 cents on meds.
« on: May 22, 2008, 05:44:34 PM »
We only generally here the horror stories in reguards to side effects.
Even when I found out my HIV status,I was so afraid of meds because everyone I spoke to,whether it was via email or the dozens of hotlines I called (in a panic),everyone had the scariest stories.

Well, Let me say,if I hadnt ever mentioned it before, I for one did not have any horrible side effects at all.
Just the very first night on sustiva was rough..
I had what I could campare to a really bad acid trip where I felt extremely guilty and ashamed. Because of the sustiva,the guilt was magnified and it was really speedy and I couldnt sit /lay still in my bed.
My wife comforted me by wiping a cool rag on my head and that settled me a bit and eventualy I fell asleep. The whole scene lasted about an hour.
The next night I was afraid to go to bed.Eventually I fell asleep,and had a wonderful dream that I was a world wrestling champ!(I'm a big fan) It was a great dream actually.
But that was about the extent of it.
Oh yeah, I also saw white spots for a few weeks,a bit distracting but not a big deal.
So there ya go, no horrible side effect and 2 and a half years later,if it wasnt for my lab results,I would never know I have this bug inside of me.
In fact ,there was a time that I felt that things are just too normal and I was afraid that the other "shoe will drop" But I'm over that and I am as fine today as I was the day before I was diagnose.
I was just reading a few posts and ,well,I dont know,I just thought that I'd share my feelings on the whole "meds" thing.
Yeah,this whole HIV/AIDS thing really sucks. But I'm forever grateful that there is medicine that keeps me alive and healthy without any real noticable difference in my life.
So if you are starting meds,dont be afraid, it may not be nearly as bad as you might think..It wasnt for me,and it may not be for you.
Adhere to them,keeps your I.D. appointments and stay positive!
No pun intended!  ;)


Offline Ann

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Re: My 2 cents on meds.
« Reply #1 on: May 22, 2008, 05:55:22 PM »
Great post Dingo, thanks for sharing!

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Offline Miss Philicia

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Re: My 2 cents on meds.
« Reply #2 on: May 22, 2008, 06:30:18 PM »
Thanks Dingo.  It can never be said enough that newly diagnosed people in the year 2008 are going to log onto the internet and selectively see the scariest stories, because someone that has a much-less-than-scary experience with meds is often not going to take the time to write about it.
"Iíve slept with enough men to know that Iím not gay"

Offline sharkdiver

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Re: My 2 cents on meds.
« Reply #3 on: May 22, 2008, 09:04:56 PM »
Thank you very much Dingo. I really appreciate you speaking up and sharing that.

Yes, starting meds is a big deal for many and a lot of fear has been expressed here on the forum.  But I would never want anyone to experience the alternative, which is wasting away from an opportunistic infection (believe me I know).  And especially now since treatment is available.

Thanks again,

Offline StrongGuy

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  • Posts: 492
Re: My 2 cents on meds.
« Reply #4 on: May 22, 2008, 10:14:07 PM »
Great story and thanks for sharing.

I think we all benefit when a diversity of experiences - sometimes good and sometimes bad - are shared honestly and openly.

My own personal view from what I see here, at least, is that these forums have evolved into a place where lots of people openly share their successes and receive positive support. I also think as meds and treatments change and improve somewhat, so do the stories and the balance.

"Get your medical advice from Doctors or medical professionals who you trust and know your history."

"Beware of the fortune teller doom and gloomers who seek to bring you down and are only looking for company, purpose and validation - not your best physical/mental interests."

"You know you all are saying that this is incurable. When the real thing you should be saying is it's not curable at the present time' because as we know, the great strides we've made in medicine." - Elizabeth Edwards

Offline BlueMoon

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  • Calling from the Fun House
Re: My 2 cents on meds.
« Reply #5 on: May 23, 2008, 07:28:37 AM »
Count me among the satisfied customers.

No problems after three months.  I'm looking forward to my next blood test in a few weeks and hoping for good things.
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline BT65

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Re: My 2 cents on meds.
« Reply #6 on: May 23, 2008, 07:46:34 AM »
Dingo, thanks for posting this.  Way too often all we hear is about bad happenings with the meds and not the good (i.e. that they enable us to actually keep alive).  Hopefully people will read this and take hope.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

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Offline next2u

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Re: My 2 cents on meds.
« Reply #7 on: May 23, 2008, 11:09:42 AM »
good post dingo! i am definitely a fence-sitter when it comes to meds. i will be going on meds sometime in the near future and have  been hesitant because of the side effects. let us know the results from your upcoming labs.
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5
sept14 cd4 990; vl ud; cd4% *
jun15 cd4 1152; vl ud; cd4% *
oct15 cd4 583; vl 146; cd4% 42
mar16 cd4 860

Offline Veritee

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    • Post Natal Illness Support
Re: My 2 cents on meds.
« Reply #8 on: May 23, 2008, 05:54:26 PM »
A month or so on same here re the meds
I hated the thought of taking them but so far I have few real problems.
A bit of diarrhea sometimes but nothing really bad -nothing I can not cope with easilly

Just so grateful that I got HIV at a time when the meds are so improved

And my heart goes out to those who had to take the meds in the past that could make you feel so ill

Veritee XX

« Last Edit: May 23, 2008, 05:56:09 PM by Veritee »
I have a blog here, please do not judge me on what I say here- I need to offload and this is where I do it: http://hiv-and-us.blogspot.com/

Offline danpoz

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Re: My 2 cents on meds.
« Reply #9 on: May 23, 2008, 07:58:21 PM »
Thanks Dingo.  Today will be 5 weeks on Atripla for me and I'm right there with you on side effects.  I had (and still occasionally have) strange dreams from the Sustiva in the Atripla but definitely not something that isn't manageable given all the good the meds are doing.  The dreams have all been very pleasant, except for one where I was attacked by escalators (childhood fear after my foot got stuck in one when I was little) and I rarely remember all of the details.

Thanks again for sharing something upbeat!

12/1/07 HIV-
3/17/08 HIV+, CD4 384, VL 39966
4/4/08 Started Atripla
7/14/08  CD4 343, VL Undetectable :-)

Offline ScottPhxAZ

  • Member
  • Posts: 26
Re: My 2 cents on meds.
« Reply #10 on: May 31, 2008, 05:39:47 PM »
9 months on Viracept+Truvada.

No side effects.

No big deals.

Just the way I like it.

Now undetectable with CD4 900+.

Life is good!

07/06 infected; K103N mutation (excludes non-nukes)
Date  CD4/%      VL
08/06 867/23%  1,000,000+
09/06 646/20%     434,000
10/06 948/24%   1,710,000
02/07 851/23%      439,000
04/07 CD4: 701/23%  VL:    184,000
06/07 CD4: 697/         VL:    202,000
08/07 CD4: 565/19%  VL:    184,000
08/07 Started Truvada+Viracept
11/07 CD4: 769/27%  VL:          181
02/08 CD4: 998/23%  VL:         <48
05/08 CD4: 809/26%  VL:         <48
06/08 Stopped meds while traveling
09/08 CD4: 793/31%  VL:         <48
12/08 CD4: 739/21%  VL:     27,700
02/09 CD4: 60
05/09 CD4: 508/22%  VL:     19,400
08/09 CD4: 358/22%  VL:     62,600
10/09 CD4: 548/26%  VL:         <48
01/10 CD4: 468/28%  VL:         <48
05/10 CD4: 475/34%  VL:         <48

Offline David_CA

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  • Joined: March 2006
Re: My 2 cents on meds.
« Reply #11 on: May 31, 2008, 06:06:12 PM »
Thanks for the post.  I also like to try and mention the good that comes from HAART treatment and the lack of side effects that many of us will enjoy (even if only for a while).  Hubby and I also don't experience any side effects to speak of from Atripla after about 18 months.  Unlike many, I wasn't afraid to start meds.  I knew it was inevitable, and I was so sick (PCP) that I knew I'd die if I didn't start.  I was also so out if it that nothing, including starting  HAART  bothered me much at all. 

It's important to not lose sight of the fact that one could start experiencing bad side effects 'most any time.  Some of the 'old timers' (absolutely no disrespect implied), as well as many who have passed, have not have been able to take many of the newer, improved meds that we start on today.  I enjoy the benefits newer drugs provide while I can and not kid myself that the easy meds may not always work for me.  Still, a person who will be starting meds today needs to hear the good stories, not just the horror stories.


Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi


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