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Author Topic: My newly diagnosed BF is starting meds soon...  (Read 2016 times)

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Offline dowellndoubtnot

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  • Posts: 45
My newly diagnosed BF is starting meds soon...
« on: June 15, 2012, 10:08:30 AM »
He went to his first doctors appointment and got all his blood work done yesterday, and the doctor said that whatever the results, he recommends getting on meds right away. Was wondering how you all felt about this? i know there have been different theories on when it is best to start, so just curious about opinions.

Also, the doctor seemed to lean towards Atripla for my bf. What are some of the common side effects? I know the doctor said dizzyness, rash, sleeping pattern, anything else he may not have mentioned?

Lastly, what other options would be similar alternatives to Atripla? and any opinions on any of the options is appreciated as well. I am someone who tries to get as much information about everything before jumping in, while my bf is more about pushing it out of his head...so he has asked me to help him with the research on the different meds.

Thanks everyone!

Offline Mycen

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Re: My newly diagnosed BF is starting meds soon...
« Reply #1 on: June 22, 2012, 02:48:00 PM »
Quote
Also, the doctor seemed to lean towards Atripla for my bf. What are some of the common side effects? I know the doctor said dizzyness, rash, sleeping pattern, anything else he may not have mentioned?

I think it differs for everyone.  Mine were just some crazy dreams, but I think it is exacerbated by stress.  Most times I do not even notice the dreams/can't remember them if I have them.  Dizzyness when I first took it, was a pretty cool trip...(my dream was of Ryan Reynolds...whew).  But since then I have had mild dreams to no side effects.  If you eat with it, then the side effects are supposed to be more common.  Its advised that you take it on an empty stomach right before bed, at the same time every night.

I've been on Atripla for a little over a year and love it.  And kudos to you guys, especially for you being supportive.  Made me smile.  :)

Offline vaguesbleues

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  • Posts: 93
Re: My newly diagnosed BF is starting meds soon...
« Reply #2 on: June 22, 2012, 04:15:07 PM »
Hi there!  I agree with what Mycen said regarding Atripla.  I had some C-R-A-Z-Y side effects the first few nights, including hallucinations while I was awake in the middle of the night.  It honestly made me think of what LSD must be like with colorful swirls on the ceiling, cherub angels in a golden glow poking their heads out and talking around the door frame to my bedroom, etc.  Lots of dizziness.  But, as I knew what to expect, I was able to just shut my eyes and say "Oh f*ck me!", roll over, and go back to sleep.  :)  I did have a very slight rash for a few days about a week after beginning Atripla, but my friends didn't notice, or if they did, they certainly didn't say anything to me about it.  It was very faint and went away within 3 days or so. You can take antihistamines to help I think, but for me, it just went away on its own. 

I will agree that, at least for me, I take it on an empty stomach as I've noticed crazier dreams when I eat.  But, most nights now, I see no real side effects from this medication at all.  And it did work wonders for making the VL plummet very quickly. 

I just thought I'd ask, has the doctor done all of the battery of tests including a genotype?  I'd recommend making sure that is performed prior to starting on medication just to make sure regarding any potential resistance of any of HIV meds. 

Good luck! 
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline dowellndoubtnot

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  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #3 on: June 22, 2012, 07:15:43 PM »
Hi! thanks very much for your replies guys! And for your kind words :)

I actually am not totally sure if the doctor has done the genome test, i will ask my bf tonight. I know that the last time he went he got tons of blood drawn to do several tests on, and that he is going back in about 2 weeks to discuss the results and talk about starting meds. Is the genome test typically part of the usual tests performed when you first start HIV treatment with a specialist? Or is it something you specifically need to ask for?

Thank you!

Offline vaguesbleues

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  • Posts: 93
Re: My newly diagnosed BF is starting meds soon...
« Reply #4 on: June 23, 2012, 06:41:14 PM »
It is generally something that is done initially after the diagnosis.  I remember having about 15 vials of blood drawn that first trip into the doctor....eeek!  They'll test hopefully for the genotype test, antibody tests for Hep A, Hep B, Hep C, TB, as well as the HIV viral load, CD4/CD8 panel, among others.  The genotype test basically evaluates the sequence of the specific type of HIV one has and looks for common mutations that could confer any resistance to medications.  This helps you and the doctor make an informed decision about which medications will work the best.  It is generally recommended here in the States to have this done prior to beginning therapy. 

Just to let ya know, hopefully after this first large blood draw, they should be much smaller going forward.  I hate needles, so sitting there to have so many vials taken made me feel like passing out.  But, now they only take about 3-4 vials, so not bad at all.  :) 
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline dowellndoubtnot

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  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #5 on: June 24, 2012, 03:11:56 AM »
Thanks! yes he had 15 vials of blood taken as well his last visit! So i am assuming he had all those tests taken :)

Offline mecch

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  • red pill? or blue pill?
Re: My newly diagnosed BF is starting meds soon...
« Reply #6 on: June 24, 2012, 07:01:53 AM »
You want information about all first line treatment options that exist?  Wouldn't it be more efficient if you knew your BF's needs and any possible resistances, and jot down the few that the doctor will suggest, and give them to us here for comments....

The thing not on your bf's doctors list about Atripla is the cns problems that OCCASSIONALLY present for a few people - rage, depression, anxiety, etc.  Your BF should discuss his history with his doctor and see if that is a risk for him or not.

Opinions about early treatment.  There are many threads in these forums with lengthy discussions about when to start.  Dig in an read some of them.

HIV+ people these days seem to be all over the continuum about when to start and why.  Therefore this finally comes down to a VERY individual decision that your BF makes in consultation with his doctor.

We dont even know from what you have posted if this is a recent infection, or rather a recent diagnosis.  Two different ball games. Also, we dont know the status of his immune system, his numbers.  So how are we supposed to give an opinion about starting meds soon - when we know nothing about your BF's situation? 

Therefore my advice is that he ask the doctor why he should start soon.   And when you get that rationale, and you want to discuss it with HIV+ people here, than post the doctor's reasoning.  At that time, post more information about your BF's situation.

Otherwise I feel we are pissing in the wind here and maybe providing useless information and causing you useless worries.
« Last Edit: June 24, 2012, 07:03:48 AM by mecch »
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline dowellndoubtnot

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  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #7 on: June 24, 2012, 04:23:28 PM »
Well, to answer some of your questions...my bf is waiting for his first test results to come back, he will have the results july 3rd i believe. It was actually the doctor that told him that it would be a good idea that he start doing some research about the possible first line treatments so that he is informed for his next doctors appointment. That is why i posted on here, hoping to help him out with that.

I have indeed read through a lot of the information about when to start, but i figured that rather than bringing up different threads from different time periods, i'd start my own, because i know opinions and medical information on this is changing on the subject constantly. My bf actually asked his doctor about it last time, and he said that just in the past couple months information has come out showing that it is best to start treatment right away, so was just interested in others opinions on this.

As for whether it is a recent infection or recent diagnosis, again the blood work is not back, so i cannot say for certain, but he is relatively certain that it is a recent infection from around 6 months ago, and he was diagnosed about 2 months ago.

Offline mecch

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  • red pill? or blue pill?
Re: My newly diagnosed BF is starting meds soon...
« Reply #8 on: June 24, 2012, 06:06:36 PM »
You understand that these are two different situations then.
If he has a recent infection, say, last few months, then the doctor is suggesting "early treatment".  So you can read about the rationales for that.
In any event, it will make more specific sense when you know your bf's labs.

If he had many years HIV infection, but is diagnosed now, that would be "treatment at diagnosis" but NOT early treatment.

Also, some people consider it "early treatment" even if its a few or many years HIV+ but NOT yet in the country's range of blood levels that call for treatment.

Yes there are many doctors who are treat ASAP.  In Switzerland many doctors in Geneva want to treat early in infection.  Add to that, many doctors want to treat at diagnosis, regardless of how long the infection has run.

In contrast, in another canton, doctors still follow the treatment protocols and recommend treatment when the numbers say its necessary.   

Its your bf's call, in consultation with a doctor he trusts.


There are far too many "first line" treatments available.  It only makes sense to learn about the ones the doctor recommends, AFTER he knows what is appropriate, if there are any resistances, etc.

Also depends on what is available in your country, and what you can afford, and what your bf is willing to put up with. 

 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Assurbanipal

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  • Posts: 2,173
  • Taking a forums break, still see PM's
Re: My newly diagnosed BF is starting meds soon...
« Reply #9 on: June 25, 2012, 06:08:21 PM »
You might find this section of the lessons on the site helpful to read through.  And it links to more detailed descriptions of each drug and combo.

http://www.aidsmeds.com/cn/printView.php?page=/articles/WhenToStart_10359.shtml&domain=www.aidsmeds.com

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline dowellndoubtnot

  • Member
  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #10 on: July 05, 2012, 12:56:44 PM »
Thanks! We read through that and it did help :)

My bf got his results back, and thankfully he has no resistance to drugs or other complicating factors. His VL was 4000 and his CD4 count was 490. The doctor prescribed him altripla and he will probably be starting in a couple weeks...he is going to his case manager next week to get everything going.

Couple questions...how many hours before taking altripla at night should he stop eating? And if he altripla works well for him, and he takes it religiously and does not miss doses, is it likely that he will be taking it for the rest of his life (if better meds don't come around to switch to)? Or does one build resistance even with perfect adherence over a long period of time? Thank you!!

Offline vaguesbleues

  • Member
  • Posts: 93
Re: My newly diagnosed BF is starting meds soon...
« Reply #11 on: July 05, 2012, 01:39:37 PM »
Not bad at all!  That's a pretty low VL, so I'm sure that Atripla will drop that to undetectable quite quickly. 

As for your questions regarding the medicine, I stopped eating 2-3 hrs prior to taking it for the first several weeks.  As I'm up until around 1-2 a.m., this wasn't an issue for me as that meant I'd not have anything to eat past 10 pm.  I found that the side effects were a bit stronger if I chose to eat right before taking it, but for each person, that could be different. I've been on this medication now for going on 9 months now, and I've found that I can now eat a bunch of food and then take it right away with very little issues. 

As for whether he'll be on this particular medication for life, that all depends. Starting antiretroviral therapy is currently a lifetime commitment.  But whether or not he'll be on Atripla that long will depend upon the medication's ability to drop the VL to undetectable, as well as whether or not there are serious side effects.  Just remember, if this particular medication doesn't work for him in regards to side effects, there are plenty of other options out there for him.  :)
03/10/2011 - Tested HIV negative
04/26/2011 - Inconclusive WB result
05/19/2011 - Confirmed HIV positive
                    VL < 50, T-Cell 747 (30%)
06/13/2011 - VL 345, T-Cell 841 (30%)
08/23/2011 - VL 50,100, T-Cell 1155 (19%) - CMV
09/18/2011 - Started Atripla!!
11/07/2011 - VL 489, T-Cell 881 (31%)
02/08/2012 - VL Undetectable!!, T-Cell 772 (34%)
08/08/2012 - VL UD, T-Cell 1070 (42%)
11/05/2012 - VL UD, T-Cell 1174 (35%)
03/18/2013 - VL UD, T-Cell 972 (28%)
10/04/2013 - VL UD, T-Cell 1025 (34%)

Offline dowellndoubtnot

  • Member
  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #12 on: July 05, 2012, 02:19:06 PM »
Thank you!! :)

Just out of curiosity, because i am new to all of this ahah, what do the percentages by your T-Cell count indicate?? Thanks!

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: My newly diagnosed BF is starting meds soon...
« Reply #13 on: July 06, 2012, 09:59:14 AM »
Thank you!! :)

Just out of curiosity, because i am new to all of this ahah, what do the percentages by your T-Cell count indicate?? Thanks!

There's an explanation of what the percentage means in the CD4 Test section of the The Blood Tests You'll Need lesson.

Have you checked out the Lessons section of this website? There's a wealth of information there, all written in plain English. They're also printable, so you can print them off so they're at hand any time, and you can make notes on them if you want. I found doing that to be very helpful when I was newly diagnosed.

Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline dowellndoubtnot

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  • Posts: 45
Re: My newly diagnosed BF is starting meds soon...
« Reply #14 on: July 06, 2012, 11:44:45 AM »
I just read through the Lessons section and it is indeed very helpful, thank you! :)


Offline bufguy

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  • Posts: 161
Re: My newly diagnosed BF is starting meds soon...
« Reply #15 on: July 06, 2012, 02:05:08 PM »
I started on Atripla 4 years ago with a Vl of 47000 and CD4 of 511. My doctor believes in early treatment especially if he feels his patient will be adherent...and I have not missed one dose in 4 years.
I had side effects for the first 10 days or so. After that its been a breeze. No side effects and I find I can eat whenever I want.
I'm healthy undetectable and my CD4 is over 1200.

Good Luck!
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

 


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