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Author Topic: Got Some News Today  (Read 13025 times)

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Offline LivingFree1989

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Got Some News Today
« on: August 15, 2012, 10:36:23 am »
I found out that my viral load was 19,870 and cd4 492. So they are calling in a for atripla is it wrong that I rather just live my life for however long and then just die than to take the medicine. Coming from a nurse that sounds bad but I read side effects and the difficulty concentrating   concerning to me.. I need to be able to do my job. I am really scared to start the medicine. I am going to a ID Doc soon to get a better regimen or something..I don't know I just had to get it out there.

Offline Ann

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Re: Got Some News Today
« Reply #1 on: August 15, 2012, 12:34:32 pm »
OK, for a start, your numbers aren't bad and you can afford to wait a while longer until you can get your head around the idea of starting meds - and also learn more about the meds and what combos are available to you.

There are combos other than Atripla that you can take that won't give you the CNS side-effects. I myself refused to take any combo with Sustiva in it for that very reason. I've been on Prezista, Norvir and Truvada for five weeks now and aside from a little bit of totally manageable diarrhea in the first three or four weeks, I'm not experiencing any side-effects. Atripla isn't the only combo out there and you don't have to take it if you don't want to.

To totally eschew taking any meds because of the possible side-effects from one particular drug is just nuts. Do you have any idea how protracted and painful death from aids is? It's NASTY and far worse than any med side-effects from the meds used today.
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

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Re: Got Some News Today
« Reply #2 on: August 15, 2012, 01:38:54 pm »
Thanks! I am going to talk to the ID doc before I take anything.

Offline Ann

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Re: Got Some News Today
« Reply #3 on: August 15, 2012, 01:49:34 pm »

Thanks! I am going to talk to the ID doc before I take anything.


Good plan. Before you discuss it with your doctor, you might want to read through the Meds Pages and also the Lesson pages about The Big Treatment Questions. I meant to give you those links in my previous post but I forgot. If you know a bit more about what meds are available and recommended for first-line treatment, you'll be able to have a more productive discussion with your doctor.

Stick to your guns - you don't have to take a combo containing Sustiva if you don't want to. Sustiva is the one med that is most often (but now always) associated with CNS side-effects.

Good luck and let us know what happens.
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

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Re: Got Some News Today
« Reply #4 on: August 17, 2012, 01:05:37 pm »
After much thought and research I decided to take the med. to see how it reacts with my body. Also with the assistance of insurance and a copay card its free for me as no money directly out my pocket. Took it last night 2 hours after eating. So far I feel a little high. I heard it causes mood things so we will see. I see a ID doc on Friday for the first time since 09. If I can't tolerate  it I will stoa it and ask about complera

Offline Ann

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    • Num is sum qui mentiar tibi?
Re: Got Some News Today
« Reply #5 on: August 18, 2012, 07:00:41 am »
It's best to take Atripla (or Sustiva) at bedtime. This way you will sleep through the "high" side-effects. It's also important (at least at first, until you get used to it) to take it at least two hours after eating, but you can take it much later than two hours after eating. The important thing is that your stomach is empty. And for best results side-effect wise, take it right before you go to sleep. Good luck, and keep us posted.

Ann
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

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Re: Got Some News Today
« Reply #6 on: August 18, 2012, 02:00:27 pm »
I have been taking it at bedtime. Today is better. I don't feel like I did yesterday...its much better as far as feeling high. Thanks I will keep you posted

Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Got Some News Today
« Reply #7 on: August 20, 2012, 08:04:35 am »
It's good to hear that things are getting better. Chances are great that the side-effects will continue to subside and before you know it, you won't have any problems. Hang in there! :)
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

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  • Posts: 27
Re: Got Some News Today
« Reply #8 on: August 24, 2012, 08:34:44 pm »
Went to the ID doc today, I like him. He was a little concerned about the med due to me being 23 but suggested I stay on. I had concerns about beginning to work the night shift soon and he suggested that I do a one time switch to day time if I think I can handle it. He said by the end of the month the fda is approving a med thats once a day with no side effects, he is conducting the study. So if I need to switch he will consider giving me that drug. Me and the drug are working fine together as long as I dont eat the high fat meal I can stay up after the med eventhough I usually go to sleep anyway due to being tired.  ;D

Offline TabooPrincess

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Re: Got Some News Today
« Reply #9 on: August 27, 2012, 02:23:05 pm »
I've been taking atripla for almost 3 months now (i'm also a nurse) and can honestly say that having it on an empty stomach or a full stomach has made no difference to me at all.  In fact, going to bad on an empty stomach seems to ruin my sleep even more as I'm hungry all night and wake up feeling nauseous. I'm also worried about night-shifts but so far have opted to not do them, obviously this depends on your personal work circumstances.  Just play around with it a bit and see what works best for you - since this is a life-time thing then I think you need to do what suits you.  I've discovered I need to take it immediately before going to sleep and I can't stay up longer than around 30 mins or I go a bit nuts!
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline LivingFree1989

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  • Posts: 27
Re: Got Some News Today
« Reply #10 on: September 03, 2012, 04:50:25 pm »
I dont really have a choice as I am a new graduate. its much better now. No side effects at all that I can feel! The high fat meal doesn't really affect me anymore. My vitamin d is low so I have to correct that. I am going to try out a day time does on Friday and see how it goes.

Offline emeraldize

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Re: Got Some News Today
« Reply #11 on: September 03, 2012, 09:36:11 pm »
The high fat meal doesn't really affect me anymore.

Hi Living,

So glad you decided to take meds.

Your Atripla should be taken on an empty stomach. And regarding the high fat content meals -- it's not about you not feeling a certain way physically. Food with high fat content can increase levels of efavirenz and should not be eaten before taking Atripla.

Given that you're a nurse, you might find reading the product insert interesting and helpful.

Em


Offline Ann

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  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Got Some News Today
« Reply #12 on: September 04, 2012, 05:16:24 am »
That's fantastic news, Living! I hope your switch to daytime goes well for you. Let us know, ok?

Getting out in the sunshine will help with your vitamin D levels. Ten or fifteen minutes with as much skin showing as possible - without sunblock cream - can do wonders. Just be careful you don't burn and it will be ok. Talk to your doctor (or a nutritionist) about what vitamin D supplements he or she recommends. Not all supplements are created equal.

You might also want to use our search engine to find some threads on vitamin D. It's been discussed extensively in other sections of the forums and some of the posts are very informative.

Make sure you write it as "vitamin D", with the "quote" marks, because the search engine doesn't like search terms of a single letter. It will accept single letters when they're part of a phrase inside quote marks.

Good luck with your daytime switch! I hope it goes well for you.


And regarding the high fat content meals -- it's not about you not feeling a certain way physically. Food with high fat content can increase levels of efavirenz and should not be eaten before taking Atripla.


The increased level of efavirenz isn't a problem unless the increased level causes one to feel side-effects, so it actually IS about feeling a certain way.

It makes no difference otherwise and many people can eat what they like when taking a combo including efavirenz, and still maintain an undetectable viral load. An undetectable viral load is the whole point of the exercise. :)
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

  • Member
  • Posts: 27
Re: Got Some News Today
« Reply #13 on: September 05, 2012, 07:09:11 pm »
Okay. Im switching to a daytime dose Thursday so I can see how it affects me before I try when I work. The doctor gave me a prescription for 50,000 units for five weeks 3x a week. I go to the doctor on the 17th so I will see if this med is working at all and I usually don't eat a high fat meal anyhow as I am overweight anyhow and have been working to lose weight. I research everything and did read the insert. The insert didn't tell me why I did not even have the talk with my doc he just called and said take this. So, I researched it and read on it and figured to give it a shot. Thanks for all the comments. I will let you guys know you all have been helpful. :D

Offline emeraldize

  • Member
  • Posts: 3,397
Re: Got Some News Today
« Reply #14 on: September 06, 2012, 12:38:10 am »
The increased level of efavirenz isn't a problem unless the increased level causes one to feel side-effects, so it actually IS about feeling a certain way.

Hmm, interesting Ann-- that's not the way it was initially explained to me -- it was about the pharmacokinetics. I'll go back to the doctor who explained it to me. One of my relatives takes Atripla and it will be good to revisit the info. Maybe I misunderstood what she said. Em

Offline LivingFree1989

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  • Posts: 27
Re: Got Some News Today
« Reply #15 on: October 04, 2012, 01:35:35 pm »
So, I went to the doctor and he changed me to the new Stribild because of the variable bed times and hectic schedules I have. Took my first dose today. I will see how this works for me. Since I have to take this with food it will be a better fit because I usually eat lunch around the same time.

Offline TabooPrincess

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  • Posts: 314
Re: Got Some News Today
« Reply #16 on: October 20, 2012, 02:06:09 pm »
Is strilbald available in the UK yet?  Please let us know how you get on - I would be interested in changing too, for the same reasons, shift work and whatnot
09/ 2008 - Seroconversion
11/2008 - Tested pos, cd4 640 vl 25400
12/2008 - cd4 794 vl 27798, 35%
03/2009 - cd4 844 vl 68846, 35%
06/2009 - cd4 476 vl 49151, 33% (pregnancy confirmed)
08/2009 - cd4 464 vl 54662, 32%
Started meds for pregnancy (Kaletra, AZT, Viread)
09/2009 - cd4 841 vl 3213, 42%
10/2009 - cd4 860 vl 1088, 41%
11/2009 - cd4 771 vl 563, 38%
12/2009 - cd4 885 vl 151 42%
Discontinued meds after baby born
02/2010 - cd4 841 vl 63781, 38%
05/2010 - cd4 1080 vl 113000, 39%
08/2010 - cd4 770 vl 109242
12/2010 - cd4 642 vl 111000, 34%
06/2011 - cd4 450 vl 222000, 33%
11/2011 - cd4 419 vl 212000, 24%
03/2012 - cd4 280 vl 118000, 26% (repeated Cd4 at 360)
05/2012 -cd4 360 vl 99,190
10/2012 Atripla, cd4 690, vl 80
12/2012 Darunavir, norvir, truvada, Cd4 680, vl u/d
07/2013 cd4 750,ud

Offline Ann

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  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Got Some News Today
« Reply #17 on: October 21, 2012, 10:53:20 am »
Is strilbald available in the UK yet?  Please let us know how you get on - I would be interested in changing too, for the same reasons, shift work and whatnot

I don't believe it has been approved yet, and even if/when it is, I doubt that it will be widely prescribed because of the high price. It is predicted to cost over twice the price of Atripla.

Please read the article Quad approved in US: cost may limit use in Europe, written by Simon Collins on the UK based website i-Base.

Have you thought about switching to a different combo that wouldn't have the problems that Atripla can cause for people who work changing shifts? There are other once a day combos available, although they entail taking more than one pill. The combo I'm on (Prezista, Norvir, Truvada) is four pills once a day and honestly, it's not a problem and I haven't really had any side-effects other than a little more diarrhea than usual for me in the first two weeks. That's cleared up. 

The only caveat with my combo is that Prezista needs to be taken with some food - but you don't need a whole meal. I often take it with just a snack, like a couple Babybels or a pot of yogurt, and a small glass of milk or OJ. Sometimes I have it with a full lunch, but more often than not, just a snack. And it's working - my VL went down to just 414 (from 30,900) after only six weeks and I fully expect to be UD when I have my next blood draw next week (fifteen weeks after starting).
Condoms are a girl's best friend

Condom and Lube Info  

"...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 LivingFree1989

  • Member
  • Posts: 27
Re: Got Some News Today
« Reply #18 on: December 06, 2012, 04:14:54 pm »
I have not had any major issues with Stribild. Only issues are anxiety and loss of appetite that are noticeable. But I am going to the doctor about the anxiety. Its manageable for the most part.

Offline jackie72

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  • Posts: 1
I found out that my viral load was 19,870 and cd4 492. So they are calling in a for atripla is it wrong that I rather just live my life for however long and then just die than to take the medicine. Coming from a nurse that sounds bad but I read side effects and the difficulty concentrating   concerning to me.. I need to be able to do my job. I am really scared to start the medicine. I am going to a ID Doc soon to get a better regimen or something..I don't know I just had to get it out there.
After much thought and research I decided to take the med. to see how it reacts with my body. Also with the assistance of insurance and a copay card its free for me as no money directly out my pocket. Took it last night 2 hours after eating. So far I feel a little high. I heard it causes mood things so we will see. I see a ID doc on Friday for the first time since 09. If I can't tolerate  it I will stoa it and ask about complera

 


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