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HIV Life >> I Just Tested Positive

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Mark100
Member

Reged: 02/23/13
Posts: 27
Loc: Montreal, Canada
Just started my treatment today.
      #271406 - 03/29/13 12:09 PM

Hey Guys, well I saw my doctor yesterday and after my second blood test results she decided to start me on medication. I was infected in early December 2012 and was diagnosed February 20th with an initial cd4 of 420 and a viral load of 150,000. This time my cd4 was 400 and my viral load was 500,000. I guess this is somehat common after the initial infection.

The doctor started me on Isentress and Kivexa, which is a 2 pill a day regime. She said that will help my viral load go down pretty quickly and then after that I could switch to a one pill a day treatment if I like.

Anyway, so far so good. I took my first pill a few hours ago and never really noticed any side effects. I guess time will tell.

Has anyone here ever taken any of these medications? If so, maybe you could let me know how they work for you?
Thanks!
Mark

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kicker
Moderator

Reged: 10/25/10
Posts: 1131
Loc: GA, USA
Re: Just started my treatment today. new
      #271408 - 03/29/13 04:33 PM

You have taken a very good first step in dealing with HIV. That's awesome. I haven't taken that combination myself, but I wouldn't put to much stock in other's experiences with them. I started with one 1 pill a day medication and it was one of the worse experiences of my life. I suffered for months on it. Everyone else I spoke to about it loved it. Had no problems and had nothing bad to say.

My point is that every medication has a different reaction with every person. No two people are alike so everyone will have a different experience. What matters is does it work for you. If it does great! So far it sounds like it does and that is what is important. Not if it was a great or horrible experience for someone else.

Keep up the good work, in no time you will feel like you have control and eventually even taking the meds won't seem like that big a deal if you even think about it. It's been two years since I started and I don't even give it any thought anymore its so routine. That's what you want, normalcy it goes a long way to feeling healthier and better all around.

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Mark100
Member

Reged: 02/23/13
Posts: 27
Loc: Montreal, Canada
Re: Just started my treatment today. new
      #271411 - 03/29/13 05:50 PM

Hey thanks for the words of encouragement kicker ;-)
That's what I figure as well, everyone's different so there will be many different experiences. I guess I just wanted to know if maybe this was a combination that was known to cause side effects for a lot of people.

I was a little nervous about having just started my medication because I tend to be very sensitive to stuff like that. Over the counter cough medicine can be sometimes too much for me to handle, as is a simple cup of coffee. But like I said, so far so good. I'll be taking my second pill in a few hours. I'll take it one pill at a time and see how it goes. And like you said, pretty soon it will just be part of my routine ;-)
Thanks,
Mark




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iam1
Fanatic

Reged: 06/17/09
Posts: 167
Loc: Georgia
Re: Just started my treatment today. new
      #271459 - 04/01/13 03:10 PM

Mark, Congratulations on seeking care and getting help! So many people try to deny to themselves that they could possibly have HIV. These people tend to be the people who do poorly on meds, because they don't take them like they should.

Taking your meds is IMPORTANT! Taking your meds correctly is IMPORTANT! Not missing doses of your meds is IMPORTANT! Do you see the idea I'm trying to push here?

I'm going to be the wet blanket at you party here. I'm going to tell you, because you need to know. It's been the weekend and hopefully you're still taking your meds with no side effects. But, side effects often take days to show. You may just be starting to see them now. Don't be surprised if you have a reaction next weekend. If you get through the first couple days without severe reactions chances are later reactions (if they occur) will be mild.

IF you have a reaction keep taking the meds if at all possible. Try to get through the side effects. Call and talk with the staff (the nurses are very good about handling this type of issue) at the clinic where you're being treated if the side effects persist more then 4 or 5 days. Or, if the side effects are causing you to not be able to function normally (not work, not sleep).

One of the first things I do whenever I get a new med is look it up on the internet. What is most important for me to know the interactions and restrictions. Most meds you take from now on WILL have both.

It's important to get all your meds from the same pharmacy. They are your first line for drug interactions. And, interactions don't only occur with prescribed meds. Many of the HIV meds have contra-indications for other over-the-counter products. You need to discuss with your care providor all possible meds you might take. Even vitamins and aspirin.

Most HIV meds don't have food restrictions by type of food. Some do have food restrictions by limiting when you can eat. It's important to follow these instructions. if the label says "Not 2 hours before or 1 hour after" be sure you have a good 3 hour window. And, some of the meds recommend that you DO eat when you take them. This is to prevent stomach discomfort, diarrhea (could be explosive), and gas (enough to fuel a medium sized city for the next 20 years).

The meds your doctor is going to prescribe for you are considered first line meds. Meaning they are recommended for people to take them first. They have been proven to work well with fewer side effects.

At some point in your treatment your meds will start to fail. It happens to everyone no matter how well you take your meds. HIV is a devious little bug that can mutate to find a way around the different meds being used to fight it. This is why they continue to do blood test regularly. If/when the meds fail there are other meds that can be used. Some of them first line meds. Some of them second line meds but still very good. Maybe with more pills or stricter restrictions on dosing.

BUT, the number of possible meds is NOT unlimited. If you refuse to take them as prescribed or want to complain about the side effects then you may find yourself suddenly with few to no opetions.

Luckily, for most of us, there are always new meds in the pipelines going through trials. Chances are when you change meds what you get changed to isn't even on the market, yet.

Stick with your meds as best you can for as long as you can. Suffer side effects if possible. Get through the side effects. A month of side effects for a med you could be taking for 10 years is a tiny price to pay.

Let us know how you're doing. And, if you have any side effects.

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Mark100
Member

Reged: 02/23/13
Posts: 27
Loc: Montreal, Canada
Re: Just started my treatment today. new
      #271471 - 04/01/13 09:50 PM

Hey iam1,
thanks for much for all the information, there was definitely some stuff in there I hadn't heard about before. I've been taking the medication for 4 days now and still no side effects to speak of (knock on wood). It's something I was a little concerned about too since I find I'm very sensitive to many things such as coffee and alcohol. I'm due to meet back with my doctor in a week to see how I'm handling the medication so far. I have a really great doctor and she seemed genuinely concerned about my well being and said if I ever needed her for something that I could stop by here office anytime she is there with no appointment.

I've read and been told that it's very very important to take your medication at the prescribed time and I've set up 2 reminders in my phone and I have my medication with me at all times just in case plans change. I must say that I didn't quite realise that if you took your medication faithfully at the right times that it would still stop working after a while. But like you say, they are constantly developing new medications so hopefully there'll always be one out there that works for me.

Thanks for the support and I'll definitely keep you guys posted as to how my treatment is going. I do realise that I have only just begun treatment so side effect could show up somehere eventually.
Cheers!
Mark

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DaveSF
Newbie

Reged: 01/14/09
Posts: 14
Loc: San Francisco, CA
Re: Just started my treatment today. new
      #271514 - 04/04/13 04:00 PM

I wanted to add my two cents and disagree with iam1 on one point, though I agree with most of what he says. I do not think it is at all inevitable that your virus will become resistant to your meds if you are adherent and take them as scheduled. Based on my own experience (infected for more than 30 years and on meds since 1990) and the experiences of others I know, I have not seen a single case of viral resistance (in people on triple combination therapy) that was not linked to poor adherence to the regimen.

In my own case, I have been on a bunch of different HIV meds over the past 23 years, but I am only resistant to AZT (Retrovir), which was the first anti-HIV antiretroviral, and I took it in mono therapy (alone, there were no other drugs) for years and then in combination with 3TC after that. Mono therapy will definitely lead to resistance.

But in every other case, I have changed meds because of side-effects, not resistance, and in almost every case it has been because of side-effects that were more annoying than life-threatening. All of those discarded meds are still available to me if I needed to go back on one of them.

My point is that you shouldn't view resistance as an inevitable outcome. Strive for complete adherence and, if your current regimen doesn't cause you any difficulty, you could be on it indefinitely. Most likely, you'll switch at some point because another option has more convenient dosing or something, but who knows? It's important to remember that there will always be a finite number of drugs out there, and if you burn through them because of poor adherence, you are probably taking one or more meds — and sometimes entire CLASSES of meds — out of the mix forever, and really limiting your options. So don't take the attitude that you are going to become resistant, take the attitude that you won't let that happen.

There may be people that develop resistance despite perfet adherence, but from what I have seen, and from what my doctors have told me, that is rare or unlikely.

Finally, while you should, of course, be aware that side-effects may occur, you shouldn't see them as a foregone conclusion either. Most of the more modern HIV meds have very minor side-effects that are fairly rare. I haven't experienced any in a long time (my last med change was to get rid of a pill that was difficult to swallow!). Minor stuff.

Good luck to you—you sound like you have a great attitude and are getting good care, and if both of those continue you will live to be old and crotchety, just as I hope to. ;-)

Dave

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Starboy
Regular

Reged: 12/09/04
Posts: 42
Loc: New York
Re: Just started my treatment today. new
      #271562 - 04/07/13 05:07 PM

I believe Dave SF is correct in his posting and while I still have some side effects My one pill Atripla will work on my control of HIV it will not break down in years to come. Taking your medications as directed gives the best results. After you become undetectable if you are a hour late or early it will not have much effect as there is enough residual medication still in pour system.

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Mark100
Member

Reged: 02/23/13
Posts: 27
Loc: Montreal, Canada
Re: Just started my treatment today. new
      #271627 - 04/10/13 08:29 PM

Well I've been on my medication now for almost two weeks and everything is going great so far. I'm actually feeling a million times better than before I started my treatment. I have energy like I haven't had in years (which is weird because I was just infected this past December). Anyway I'm not going to complain and I hope it continues to stay this way. Besides all the energy side effect the only other side effect I would say is that I've been having really crazy vivid dreams. I wake up and they almost seem real. Anyway, I can live with that.

Anyway I'll see how things progress but so far so good ;-)
Thanks for all the info everyone!
Mark

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DaveSF
Newbie

Reged: 01/14/09
Posts: 14
Loc: San Francisco, CA
Re: Just started my treatment today. new
      #271636 - 04/11/13 05:07 PM

Hey, that's great to hear, Mark. The vivid dreams are a common side-effect of Sustiva (one of the drugs in your combo) and they usually diminish over time, but don't necessarily go away completely. I actually enjoyed that side-effect, but I pretty much always have good dreams. I've heard that they are no fun if you have nightmares, but I just never experience those.

I assume you are taking your medication before bedtime, which is the right thing to do if you want to minimize the impact of the Sustiva effects. I found it very unpleasant to take Sustiva any other time (like if I forgot to take it before bed and had to take it the next morning.) It would make my head all foggy for a couple hours, it felt a bit like I'd taken some kind of recreational drug, which isn't a pleasant feeling when you are trying to work, drive, or "function" and want to be at full cognitive power. Taking it before bed solves that problem because any mental fog occurs while you are asleep and you don't even become aware of it.

Glad to hear about the increase in energy – don't know why, but I wouldn't question it, it's all good! I think you've got a great attitude, and I predict a long and happy life. I love reading reports like yours!

Best of continued luck to you... 30 years from now we'll probably all be cured, but if not, you'll be an old pro at it (like I am now) and undoubtedly be inspiring others to the same kind of successful outcome you'll be embodying.

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riverprincessModerator
Moderator

Reged: 12/25/11
Posts: 1787
Loc: Jersey Shore
Re: Just started my treatment today. new
      #271642 - 04/11/13 07:07 PM

Hey Mark Just enjoy the dreams. Some are like Sci-fi movies. I wish there was a thread where folks would share what they dreamt , no tany sexual ones but the crazy ones. I try to remember the faces of strangers in my dreams and am trying to ask unknown people their names. Cray huh. lol

--------------------
Look up to the Heavens for the answers to Lifes questions .

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oksikoko
Member

Reged: 02/26/13
Posts: 25
Loc: NYC
Re: Just started my treatment today. new
      #271679 - 04/14/13 02:08 AM

Hey, Mark! It's great to hear you started your medication and aren't having any serious issues with side effects. For me, they came and went in the beginning but nowadays I don't seem to have any. They say most people feel better once they get their viral loads down. I mean, if you had a cold virus running rampant in your body, you'd feel pretty run down. It's the same in principle - one of the many reasons to keep your viral load as low as you can. I felt like crap when mine was only 130,000+. I'm really glad to hear you're bringing it down from half a million. That's a real cross to bear. Bare? Bear. Whichever.

I agree with other posters here: just stick to the regimen and you'll be fine. If you're adherent and still somehow need to swap out medication (either for side effects or for the very rare occurrence of virologic failure), as long as you're seeing your doctor regularly and watching your numbers, you'll be able to make informed choices to keep your health up.

The important thing is to be in control of it, and it sounds like you are.

One note: I think I read someone here saying Sustiva was part of your regimen. If you're on Isentress and Kivexa, it's not. You don't have any non-nukes in that combo, just the two NRTIs (Kivexa) and an integrase inhibitor (Isentress). So, your side effect profile may vary quite a bit from that of someone on, say, Atripla, which does have Sustiva. Of course, as others said, side effect profiles vary wildly from person to person anyway.

--------------------
I'm sorry. I can't hear you over this popcorn.

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Mark100
Member

Reged: 02/23/13
Posts: 27
Loc: Montreal, Canada
Re: Just started my treatment today. new
      #271845 - 04/28/13 11:03 AM

Hey Guys,
well I just thought I'd give a quick little update as to how I'm doing since it has been one month exactly since I've started my medication (Isentress and Kivexa). I was a litlte concerned about starting treatment since my body can be very sensitive to things and I know that some of the medications can have side effects. However, the only side effect I've had for the entire month is insane amounts of energy! It's crazy! I've been going to the gym like mad and have been having workouts like I've never had in my life! Even my bf can't beleive how good of shape I've gotten in in just a month.

I know it's probably not all from the pills because I've also started eating much healthier and I've joined yoga as well, so I'm assuming that's helping with feeling better. But I'm just so greatful that everything has been working out so well. When I was diagnosed I was so scared and now only a few months later I'm feeling the best I've ever felt in my life. I'm just gonna cross my fingers and keep doing what I'm doing and hope for the best!

Thanks for all the stories, tips and advice on here as well, it's very much appreciated!
Cheers!
Mark

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DaveSF
Newbie

Reged: 01/14/09
Posts: 14
Loc: San Francisco, CA
Re: Just started my treatment today. new
      #271960 - 05/06/13 10:14 PM

Hi Mark,

Sorry for the slow reply, I was traveling last week, saw your post but didn't get a chance to reply until now. Just wanted to say congrats, I'm happy (but not surprised) that everything is going great! Maybe some of your newfound energy comes from relief that all of your worst fears about treatment didn't come to pass. ;-)

Anyway, I am sure you'll continue doing well, but if you ever need a friendly "ear" feel free to drop a line or post here. You will learn a lot along the way, and one of these days you'll be a veteran HIVer giving advice to someone (and I'll be an old man trying to find my teeth.) ;-)

Actually, I hope there'll be a cure along the way somewhere and we can all hang up our HIV credentials and move on to something more fun. Until then, we are all connected by this disease and hopefully we'll all continue to support each other.

Have a great May!

Dave

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poslady81
Newbie

Reged: 04/10/13
Posts: 2
Loc: Texas
Re: Just started my treatment today. new
      #272012 - 05/10/13 06:52 PM

Glad to hear that everything is working out for you!!!!

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