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Author Topic: I'm in doctor hell  (Read 4903 times)

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Offline Rockin

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I'm in doctor hell
« on: November 29, 2011, 01:40:21 PM »
Hello, this is my first post here. I'm a 31 year old gay man living in Rio de Janeiro. Sorry for the long post but I wanna tell the whole story.

I had 2 cases of pneumonia in the first half of this year...one in March and another in June. I used to be a heavy party-guy and cocaine-user...which, I believe, was the main cause of these pneumonias. In a way, it's a small miracle that I'm alive after all this.

The second one in June was pretty hardcore so I got tested and found out. Even though I was a drug user I've always been a pretty responsible guy when it comes to sex. Always condom. But then I had this boyfriend and there was a slip-up and we did it without condoms 5 times. I believe that's when it happened, even though I'm still not sure if he has it.

So I went to a doctor provided by my health care. My viral load was 17.000 and my CD4 was 290. He told me to wait a little so I could completely recover from the pneumonia to see if my CD4 would go higher. It didn't. It went to 260. So he said it was time to start the treatment.

He prescripted CT3+Atazanavir+Tenofovir because he said my HIV strain has a resistance to Effavirenz, so this, he believed, would be the next best thing.

I started taking the meds and I felt no side effects at all. I take them all at once when I wake up. It's a pretty easy and painless process. I started feeling optimistic about the whole thing.

Here in Brazil there are no HIV meds for sale, we have to get them through the government. So I went into a local public clinic, registered myself, had a doctor check on me and that was that.

BUT...a week later, this public doctor sent me an e-mail on which he questioned the treatment prescribed by the health care doctor. He said it might not be efficient and told me to drop it immediately and go back there to change it.

Well, I was working non-stop in a huge project and I really didn't have the time to go there...so I decided to keep the meds instead of suspending them, at least until I could go back to the public clinic. Better to take something than nothing at all, that's how I thought.

The health care doctor, meanwhile, stood by this treatment and said it is effective on "virgin" patients. I went back to the public doctor and he said "ok, keep taking them, have a blood test in 2 months and we'll see how it goes".

So I've been taking the meds for two months and had a new blood test. This is what happened:

Viral load - from 17.000 to 530
CD4 - from 260 to 340

I thought this was great news and felt relief. Maybe now I can convince the public doctor that he is wrong and I can keep taking them.

But no, not at all.

The public doctor told me that, by now, my viral load should be undetectable and this shows a weakness in this treatment. He is insisting that I change it and, I believe that if I refuse it, I might have to go to another public clinic to get them (further from my house)...and even then I don't know if I'll be able to.

The problem is, and correct me if I'm wrong, the next best treatments would involve: a) a med that has to be kept in the frige or b) a med that I'd have to take 2x a day.

You can see how stressed I am because of all this. I felt no side effect from this treatment and then I might have to change to another one and I might have to rely on a fuckin fridge for the rest of my life or take a pill 2x a day, which increases the chance of a slip-up, on my personal opinion.

Ever since I found out I've been trying to stay positive and confident. I'm not crying, I'm not depressed, I'm taking all this like a man. But this situation is killing me. Should I get a 3rd opinion? I'm gonna go see the health care doctor today and show him my exams to see if he agrees with the other. And I'm not gonna lie, I'm scared.

Offline mecch

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  • red pill? or blue pill?
Re: I'm in doctor hell
« Reply #1 on: November 29, 2011, 02:03:27 PM »
So you have been on HAART for two months?

Just some things I know in general: 

Lots of people don't go undetectable within two months of starting therapy.   

Sounds like you should tell both doctors you are confused by their difference of opinion and ask why should this pressure be put on you, the patient? 

Sounds like a power struggle between private and public doctors?? Are they both respected as doctors?? 

Oh, also, if the public doctor has not mentioned the althernative therapies, I think you should ask for the names, then you can learn about them.  You have some fears of refrigerated drugs, and 2x a day drugs, but you don't mention to us in the forum what specific drugs might be the alternative..

Also 2x a day dosing is a VERY small inconvenience in comparison to the HUGE benefits and necessity of being on the right combo.

And for example, my Isentress combo, with Truvada, that is very up to date, has given me so side effects, and is 2x a day.  Really, this number of pills and times of day, is the smallest of concerns, these days, when the priority is regaining a strong immune system and living well with HIV.  Don't you think??


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

Offline Cruzer625

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  • Posts: 9
Re: I'm in doctor hell
« Reply #2 on: November 29, 2011, 02:03:52 PM »
Welcome.  I'm a newbie here as well.

Things are going in the right direction, so that's something to be positive about.  :)

This might be different for everyone, but the way my doctor explained it to me is that your viral load will decrease by one log every month, which means a digit will drop off the number every month.  So, in your case it would mean that your progression would theoretically be 17,000 to 1700 to 170.  Like I said, everyone is different, so this is not definitive.  Maybe wait until your next set of labs before doing anything different?

-Michael

Offline Assurbanipal

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Re: I'm in doctor hell
« Reply #3 on: November 29, 2011, 02:53:12 PM »
Welcome to the forums Rockin

You seem to be making good progress on your current combo. 

In the event you are forced to change drugs though, many of the drugs that used to require refrigeration have been reformulated as capsules that can go in your pocket.  You might want to check to see if Brazil is offering these new formulations.

Best
A
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 Valmont

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Re: I'm in doctor hell
« Reply #4 on: November 29, 2011, 03:21:03 PM »
Hi Rockin,

Well, I´m living in Ecuador and it seems the system is pretty similar as Brazil, with imposibility to buy drugs by oneself and with the existence of gobernamental programs and impossibility to choose a doc.

I would recommand you to change of clinic and try to find a new doc, to whom you can trust and feel quiet because you know he is worry for you.  I undestand it sucks to have to go far, but it is your health that is in the balance.  I don´t think a 3rd opinion is wasting time.

I´m not infected for a large time, I don´t have many experience about how act medecines, I´m not a doc, but your results seem very good in a few time, recuperation of CD4 and relevant descreasment of VL, and I think you should wait a little more and see...

Also and I hope it is going that way, maybe your visit today will help you to clarify things...  Tell us !

Be well and take thing with tranquility (easy to say...)

Apr 2011: Diagnotized
Jun 2011: CD4: 504  VL: 176.000
Dic 2011: CD4: 714  VL: 95.000
May 2012: CD4: 395 VL: 67.000
Jun 2012: CD4: 367
Agu 2012: Starting Emtricitabine 200 mg / Tenofovir 300 mg and Efavirenz 600 mg (2 pills) different brands or VIRADAY/ATRIPLA/Mylan....
Sep 2012: VL: 138
Dic 2012: CD4: 708 VL: <34  %CD4: 32%
Jan 2013: CD4: 707 VL: <20
May 2013: CD4: 945 VL: <34 %CD4: 33%
Agu 2013: CD4: 636 VL: <34 %CD4: 50%
Dic 2013: Latent TB, started Isoniazid

Offline buginme2

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Re: I'm in doctor hell
« Reply #5 on: November 29, 2011, 03:23:03 PM »


He prescripted CT3+Atazanavir+Tenofovir

Atazanavir (brand name of Reyataz) is usually prescribed with a "booster" of Norvir 100mg per day.  However, you can take Reyataz without the booster if the dosage is adjusted.  I would ensure that you are on the correct dosage.  If not, you could very well be on an inadequate regimen.  Here is the information from AIDSMEDS:

the FDA-approved and recommended dose of Reyataz is one 300 mg capsule plus a single 100 mg Norvir (ritonavir) capsule, both taken once a day. For those starting HIV treatment for the first time and unable to tolerate Norvir, Reyataz 400 mg (two 200mg capsules) without Norvir is recommended.

Offline Rockin

  • Member
  • Posts: 494
Re: I'm in doctor hell
« Reply #6 on: November 29, 2011, 06:11:50 PM »
Hey guys,

Thanks for the replies. One correction: my viral load is at 285, not 500. My mistake.

So I just went to the private doctor and, whattya know, he actually agrees with the public doctor now. He also expected my viral load to drop below 40 after 2 months, considering how low it was to begin with (17k). So he also thinks that I have to associate these 3 meds with a 4th one, Ritonavir...which should be kept in a fridge due to its gelatinous compositions.

He said it was either that or include Kaletra in the mix, which is composed of Lopinavir and Ritonavir. But this one I'd have to take 2x a day.

Well, I'm gonna try it with Ritonavir. My biggest concern is that I might not always have a fridge avaliable...like if I spend a weekend in a friends place or something. But he said that this is just a recommendation...he said if it stays out of the fridge occasonally it shouldn't be a huge problem.

Do any of you take Ritonavir? Do you keep it in the fridge at all times?

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: I'm in doctor hell
« Reply #7 on: November 29, 2011, 06:25:35 PM »
In the US ritonavir (norvir) is available as a tablet (solidified just like Kaletra).  It has been available in that form for the last couple of years.  The tablet does not require refrigeration.

You might want to see when Brazil will have access to the new forumulation -- that would take care of the refrigeration issues.

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 newt

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  • the one and original newt
Re: I'm in doctor hell
« Reply #8 on: November 29, 2011, 06:33:07 PM »
Hello

1. As bug said earlier it is normal to add ritonavir 100mg to atazanavir when combined with tenofovir. This is not necessary when combined with abacavir.

2. You do not want to take Kaletra with atazanavir.You can take Kaletra instead of atazanavir. Kaletra is good but old,. When you get your viral load under 50 you can, if you like, take Kaletra 1 x day (though this can be hard on your stomach). The new hard tablet form of Kaletra does not need to go in a fridge. The old gel capsule type does.

3. Expect your viral load to go to 50 or under in 6 months, regardless of starting level. At 2 months a result in the 100s is a good result.

Good luck, love to Rio

- matt
"The object is to be a well patient, not a good patient"

Offline newt

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  • the one and original newt
Re: I'm in doctor hell
« Reply #9 on: November 29, 2011, 06:34:14 PM »
PS - Kaletra can be kept out the fridge for 30 days, just keep it out the sun.

- matt
"The object is to be a well patient, not a good patient"

Offline Rockin

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  • Posts: 494
Re: I'm in doctor hell
« Reply #10 on: November 29, 2011, 08:45:24 PM »
In the US ritonavir (norvir) is available as a tablet (solidified just like Kaletra).  It has been available in that form for the last couple of years.  The tablet does not require refrigeration.

You might want to see when Brazil will have access to the new forumulation -- that would take care of the refrigeration issues.



Yes, well, it's probably more expensive, that's why our government hasn't made it available yet. Just guessin, but I wouldn't be surprised if it was true.

We don't even have Atripla yet...not that I can take it but we don't.

Offline Rockin

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  • Posts: 494
Re: I'm in doctor hell
« Reply #11 on: November 29, 2011, 08:48:32 PM »
Hello

1. As bug said earlier it is normal to add ritonavir 100mg to atazanavir when combined with tenofovir. This is not necessary when combined with abacavir.

2. You do not want to take Kaletra with atazanavir.You can take Kaletra instead of atazanavir. Kaletra is good but old,. When you get your viral load under 50 you can, if you like, take Kaletra 1 x day (though this can be hard on your stomach). The new hard tablet form of Kaletra does not need to go in a fridge. The old gel capsule type does.

3. Expect your viral load to go to 50 or under in 6 months, regardless of starting level. At 2 months a result in the 100s is a good result.

Good luck, love to Rio

- matt


I'm not going for Kaletra. As I said, I think having to take it every 12hours doesn't sound appealing to me. I like the fact that I can take the meds when I wake up and that's it, I don't have to think about it for the rest of the day. If I have to take a med twice a day then I have to be constantly concerned about it.

Online leatherman

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Re: I'm in doctor hell
« Reply #12 on: November 29, 2011, 09:02:03 PM »
If I have to take a med twice a day then I have to be constantly concerned about it.
are you constantly concerned about food because you have to eat two or three times during the day? ;)

Often meds can be taken with meals (an hour or 2 or 3 either way isn't going to affect anything - so that accommodates sleeping in late some mornings, and having late or early dinners any night of the week). Just like a glass or water, a roll, or a fork, meds can be just another part of the meal and not something that needs to be thought about all day long.

by the way, obsessing about your meds is something a person new to treatment will obsess about for a while, so your worry isn't unusual. But as we tell many people that come here freaking out about meds, give it a while and they'll become just another part of your daily routine. If diabetics can give themselves shots throughout the day and still enjoy life; if people with high blood pressure can take their meds twice a day and still have an active life - well, you can go on living with your HIV meds and without them destroying your life. LOL

Just remember, your meds are NOT the enemy - HIV is! Without meds, eventually the HIV will kill you, so think of your meds as the lifesavers that they are which will ensure that you have a life to live. Then it'll be up to you to make it worth living  ;)
leatherman (aka mIkIE)


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

Offline Rockin

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  • Posts: 494
Re: I'm in doctor hell
« Reply #13 on: November 29, 2011, 09:19:53 PM »
are you constantly concerned about food because you have to eat two or three times during the day? ;)

Often meds can be taken with meals (an hour or 2 or 3 either way isn't going to affect anything - so that accommodates sleeping in late some mornings, and having late or early dinners any night of the week). Just like a glass or water, a roll, or a fork, meds can be just another part of the meal and not something that needs to be thought about all day long.

by the way, obsessing about your meds is something a person new to treatment will obsess about for a while, so your worry isn't unusual. But as we tell many people that come here freaking out about meds, give it a while and they'll become just another part of your daily routine. If diabetics can give themselves shots throughout the day and still enjoy life; if people with high blood pressure can take their meds twice a day and still have an active life - well, you can go on living with your HIV meds and without them destroying your life. LOL

Just remember, your meds are NOT the enemy - HIV is! Without meds, eventually the HIV will kill you, so think of your meds as the lifesavers that they are which will ensure that you have a life to live. Then it'll be up to you to make it worth living  ;)

Thanks, I'm not actually freaking out...I mean I wasn't until this sudden change. Not having any side effects is great, I've read some pretty nasty stories in this forum about awful side effects from some meds.

If I have to take a med 2x a day then I have to take it along with me wherever I go. During work...during gym...going out...sleeping with someone...it's a constant concern. "Is it time to take yet?' "Where did I put it?" "Oh it's here, thank God" "Will someone see me taking it if I take it here?"

I'm glad for the meds and I honestly DO NOT UNDERSTAND people who refuse it. 

I'm not afraid of death but I'm afraid of the effects of my death for people close to me. My mom had to see me getting sick from pneumonia and she was more scared than I was. I don't want to go through that ever again. 

Offline jkinatl2

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Re: I'm in doctor hell
« Reply #14 on: November 29, 2011, 09:46:56 PM »
Well, you are absolutely right. You WILL be concerned when taking meds twice a day. It will be on your mind. It will change your routine -

For a while. Week? Month? Year? Who knows? We all have different capacities for keeping ourselves crazy.

And no, this is NOT where I trot out the people who have had - and who still have to - take pills three, four, fives times a day. Or being in a movie theater when a half a dozen watch alarms went off in the 90s because people had to RIGHTNOW rush to the lobby to shovel a fistful of poisonous AZT down their throats in an unwitting race to see which would kill them the hardest.

Thing is, you WILL eventually settle down and take meds twice a day. You will adapt to the new schedule over time, just like you adapt to changes at work, or new lovers, or friends, or pets, or a different gym routine.

If you really have that little faith in your ability to handle this illness in the long run, then there really isn't too much to say beyond "Please talk to a professional or join a support group or come back here and kvetch about it."

But I fear that in our hurry to label HIV a "non-issue" we have more than succeeded. So when it IS an issue, it's suddenly an overwhelming one because the emphasis is NOT letting it become part of your paradigm.

But you are, Blanche, you are in that chair.

Maybe a little "being concerned" about it would be a good idea for you, at least for a while. HIV is still deadly. Being inconvenienced - however little - will likely not.

Sorry if I seem insensitive. Holidays do that to me. Moffie promised me a leather Xmas stocking in Montreal. He died instead. And he took medications that I wouldn't have dared to touch with a HazMat suit.

This is NOT a disease of inches. It is a marathon.  If you get freaked out by each inconvenience then you will stay pretty much freaked out an awful ot more of the time than you need to be.

I should probably not be writing this to someone as new as you are. But if not now, when? Babies get coddled, and I respect you too much to do that. You are a grown up, and if you have to take pills twice a day which will, and I cannot overemphasize :

Totally arrest a previously relentless, deadly disease

Than I suspect that you will become the person who, indeed, can do just that.

You are stronger than you know.


(added)
This is why I rarely if ever post in Just Tested Positive. I do, however, consider Living With a place where we can be frank and adult, even when it's not sensitive or sweet. Apologies to all if I'm a shithead.

"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

Offline Rockin

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Re: I'm in doctor hell
« Reply #15 on: November 29, 2011, 10:43:52 PM »
Well, you are absolutely right. You WILL be concerned when taking meds twice a day. It will be on your mind. It will change your routine -

For a while. Week? Month? Year? Who knows? We all have different capacities for keeping ourselves crazy.

And no, this is NOT where I trot out the people who have had - and who still have to - take pills three, four, fives times a day. Or being in a movie theater when a half a dozen watch alarms went off in the 90s because people had to RIGHTNOW rush to the lobby to shovel a fistful of poisonous AZT down their throats in an unwitting race to see which would kill them the hardest.

Thing is, you WILL eventually settle down and take meds twice a day. You will adapt to the new schedule over time, just like you adapt to changes at work, or new lovers, or friends, or pets, or a different gym routine.

If you really have that little faith in your ability to handle this illness in the long run, then there really isn't too much to say beyond "Please talk to a professional or join a support group or come back here and kvetch about it."

But I fear that in our hurry to label HIV a "non-issue" we have more than succeeded. So when it IS an issue, it's suddenly an overwhelming one because the emphasis is NOT letting it become part of your paradigm.

But you are, Blanche, you are in that chair.

Maybe a little "being concerned" about it would be a good idea for you, at least for a while. HIV is still deadly. Being inconvenienced - however little - will likely not.

Sorry if I seem insensitive. Holidays do that to me. Moffie promised me a leather Xmas stocking in Montreal. He died instead. And he took medications that I wouldn't have dared to touch with a HazMat suit.

This is NOT a disease of inches. It is a marathon.  If you get freaked out by each inconvenience then you will stay pretty much freaked out an awful ot more of the time than you need to be.

I should probably not be writing this to someone as new as you are. But if not now, when? Babies get coddled, and I respect you too much to do that. You are a grown up, and if you have to take pills twice a day which will, and I cannot overemphasize :

Totally arrest a previously relentless, deadly disease

Than I suspect that you will become the person who, indeed, can do just that.

You are stronger than you know.


(added)
This is why I rarely if ever post in Just Tested Positive. I do, however, consider Living With a place where we can be frank and adult, even when it's not sensitive or sweet. Apologies to all if I'm a shithead.



I don't mind at all...I'm not overly sensitive.

I'm not saying that I'm not concerned...of course I am and I will be for the rest of my life. What I'm saying is: from the very first day I found out I was positive I said to myself that I'd have to try and live a "normal" life as much as possible. That's what would keep me from losing my mind and having nasty, unhealthy thoughts (you know what I'm talking about).

Having to take 5 meds a day is bad...but you get used to it. It only takes about 1 minute of your day. My stepfather has to take meds for his heart condition everyday, I'm not the only one doing it. 

Having to take them 2x a day? Boy that would be a bitch. That's why I decided to go with Ritonavir instead of Kaletra...so I wouldn't have to do it. I know some people do, and are fine with it...and, of course, if my only option was Kaletra than fine, I'd do it. But still....it would be a bitch.

I know that none of us live a "normal" life per say...that's why I believe the illusion of it it's so important. And every little thing counts.

Online leatherman

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Re: I'm in doctor hell
« Reply #16 on: November 29, 2011, 10:56:47 PM »
Having to take them 2x a day? Boy that would be a bitch.
do whatever it takes to not end up with severe diabetes then. You'll be totally tripping if you have to give yourself insulin shots 2 or 3 times a day. LOL :D

"Is it time to take yet?'
um, is it breakfast or dinner time? :D It's not like you're taking AZT that you'll need to set an alarm clock to wake you up every four hours, 24 hours a day, 7 days a week, to take 4 pills every damned time. (Can you tell how fondly I remember the bad ol' days? LOL) Taking some pills at breakfast and dinner is such a no-brainer, I just can't understand why you think you'll be worried about taking pills all day long.
 
"Where did I put it?" "Oh it's here, thank God"
buy a pill key fob ;)

I carry a set of pills in that (remember to change out frequently) so that I can eat dinner anytime, anywhere with anybody; or have pills first thing in the morning after I've stayed over at someone's house. I refuse to let HIV meds deter me from dinner or screwing.  ;) Taking pills 2x a day is not an excuse to stop your life from being as "normal" as you want it to be or as "normal" as you make it.

"Will someone see me taking it if I take it here?"
omigoodness! ROFLMAO :D next time you're out at a family restaruant, take a look around. You'll see all sorts of people popping pills with their dinner. (make sure to hit a Denny's at 5pm to see the geriatic crowd goobling down their pills like appetizers LOL) You know it's not like HIV pills are glowing neon or something. LOL I mean Norvir looks like a big aspirin or antibiotic or something. No one will have any idea what you're taking what for - and you don't have to tell them anything but you're taking your dinnertime meds - cause it's none of their business. ;)
leatherman (aka mIkIE)


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

Offline mecch

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Re: I'm in doctor hell
« Reply #17 on: November 30, 2011, 08:09:44 AM »
Rockin, what others said.

Its normal to have a lot of anxieties and fears after an HIV diagnosis.

You are projecting some general ones specifically onto meds. For example, the scenario about 2x a day - how to take at a social dinner.  That seems to be anxiety about disclosure, rather than the medicine. 

All in due time. You'll get used to it all and it will be normal enough.

As for the dinner party, the weekends, etc., its perfectly easy to be discrete until the time you are ready to be open.  Just go to the bathroom or any private place and pop your dose.


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

Offline Ann

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Re: I'm in doctor hell
« Reply #18 on: November 30, 2011, 08:12:40 AM »
Hi Rockin, welcome to the forums.

I know where you're coming from and just wanted to let you know that someone understands. I totally get the whole thing of wanting to avoid meds that require twice a day dosing. I'm crap at taking anything twice a day and when I have to, half the time I forget, even if I set alarms or whatever. That said, if I HAD to take a combo with twice a day dosing, I do it to the best of my abilities (and be thankful the meds were available), but I'd probably drive myself (even more) crazy in the process.

I don't think the "you have to eat two or three times a day" analogy is a good one. I normally only eat one meal a day. One can skip meals, only eating once a day, and it's not going to cause drug resistance. Skip taking the second dose of twice daily meds once too often and you are going to end up resistant to one or more component of your combo. It's bound to cause stress in those of us who are crap at taking meds.

I'm really surprised at your doctors for getting so excited over the fact that you're not UD after only two months on the meds. Not everyone achieves this so quickly, even when starting with a fairly low VL. Hell, your VL (285) would already be UD on some of the older VL assays that were in use just a few years ago.

You just need a little more time before messing around with a combo that is working for you. And it IS working for you. You'll probably be UD in another month's time. If I were you, I'd try to reach a compromise with them - if you're not UD in another month, give their idea a try. If you are UD in another month, then there's no need to mess with it.

You know, I have to wonder if your doctors are so adamant that you need to be UD like YESTERDAY because of the lower transmission rates amongst people who are UD. Some doctors seem to think that those of us who are poz are out there fucking everything in sight and spreading our virus willy-nilly and the only way to stop us is for us to be UD. ::)
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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 Rockin

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Re: I'm in doctor hell
« Reply #19 on: November 30, 2011, 07:42:36 PM »
omigoodness! ROFLMAO :D next time you're out at a family restaruant, take a look around. You'll see all sorts of people popping pills with their dinner. (make sure to hit a Denny's at 5pm to see the geriatic crowd goobling down their pills like appetizers LOL) You know it's not like HIV pills are glowing neon or something. LOL I mean Norvir looks like a big aspirin or antibiotic or something. No one will have any idea what you're taking what for - and you don't have to tell them anything but you're taking your dinnertime meds - cause it's none of their business. ;)

It's not like that. People know I had pneumonia and being gay well...it's a no-brainer right? I know some people got suspicious over the pneumonia thing. And if they see me now popping pills...I'm not ready to disclose it to anybody whatsoever and I don't want people getting more suspicious about me. 

Offline Rockin

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Re: I'm in doctor hell
« Reply #20 on: November 30, 2011, 07:46:15 PM »
Hi Rockin, welcome to the forums.

I know where you're coming from and just wanted to let you know that someone understands. I totally get the whole thing of wanting to avoid meds that require twice a day dosing. I'm crap at taking anything twice a day and when I have to, half the time I forget, even if I set alarms or whatever. That said, if I HAD to take a combo with twice a day dosing, I do it to the best of my abilities (and be thankful the meds were available), but I'd probably drive myself (even more) crazy in the process.

I don't think the "you have to eat two or three times a day" analogy is a good one. I normally only eat one meal a day. One can skip meals, only eating once a day, and it's not going to cause drug resistance. Skip taking the second dose of twice daily meds once too often and you are going to end up resistant to one or more component of your combo. It's bound to cause stress in those of us who are crap at taking meds.

I'm really surprised at your doctors for getting so excited over the fact that you're not UD after only two months on the meds. Not everyone achieves this so quickly, even when starting with a fairly low VL. Hell, your VL (285) would already be UD on some of the older VL assays that were in use just a few years ago.

You just need a little more time before messing around with a combo that is working for you. And it IS working for you. You'll probably be UD in another month's time. If I were you, I'd try to reach a compromise with them - if you're not UD in another month, give their idea a try. If you are UD in another month, then there's no need to mess with it.

You know, I have to wonder if your doctors are so adamant that you need to be UD like YESTERDAY because of the lower transmission rates amongst people who are UD. Some doctors seem to think that those of us who are poz are out there fucking everything in sight and spreading our virus willy-nilly and the only way to stop us is for us to be UD. ::)

Hey, thanks for the reply. As for the meds well...there's not much I can do about it at this point, they're both agreeing that it's not working as they expected to. I'm not gonna create a war over it...I'll add Ritonavir to the mix...otherwise I'll feel really insecure about the whole thing. They must know better right?

 

Offline Rockin

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Re: I'm in doctor hell
« Reply #21 on: December 01, 2011, 09:11:42 AM »
So I went to my public doctor today and got my new prescription. 3TC+Reyataz+Norvir+Tenofovir. A lot but it's still 5 pills a day because now I only take 1 pill of Reyataz at a time.

My doctor said one (or more) of these meds can cause lypodystrophy. Did anybody experience that with this treatment or similar? He also said of an increase in fat and sugar in blood but I eat relatively healhty and I exercise so I'm not too worried about that. Lypodystrophy, on the other hand, is not something I can do anything about, as far as I'm concerned.
« Last Edit: December 01, 2011, 09:13:14 AM by Rockin »

Offline newt

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Re: I'm in doctor hell
« Reply #22 on: December 01, 2011, 10:06:46 AM »
What dose of Reyataz are you on?

You don't really see much lipodystrophy on this combo. You usually do not see raised blood sugar or major changes in cholesterol either.

- matt
"The object is to be a well patient, not a good patient"

Offline Rockin

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Re: I'm in doctor hell
« Reply #23 on: December 01, 2011, 10:12:24 AM »
What dose of Reyataz are you on?

You don't really see much lipodystrophy on this combo. You usually do not see raised blood sugar or major changes in cholesterol either.

- matt


300. I was on 400 but now that I included Norvir the doctor decreased it.

He also told me, before I started treatment on the previous combo, that one of the most common side effects was a certain yellow-ishness on the eyes but that didn't happen, thank God.
« Last Edit: December 01, 2011, 10:14:22 AM by Rockin »

Offline Rockin

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Re: I'm in doctor hell
« Reply #24 on: December 05, 2011, 11:39:43 AM »
So...what do you know? I took my meds today and, a few hours later, I noticed my eyes are indeed a bit yellow. I guess adding the Norvir was the cause.

Anyone experience anything like this? Should I use some eyedrops? Is this a permanent thing?

Offline Miss Philicia

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Re: I'm in doctor hell
« Reply #25 on: December 05, 2011, 11:49:27 AM »
No, it's the Reyataz that is well known to do that -- didn't your doctor discuss it with you? Norvir is just a "boosting agent" for the Reyataz, so the increased Reyataz staying in your body now has caused you to have elevated bilirubin which caused the yellowing. In general it's not permanent and will fade over 2-3 weeks. I think something like 5% of patients on this have severe yellowing and switch to something else, but that's really intense yellowing of the skin.
"I’ve slept with enough men to know that I’m not gay"

Offline Rockin

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Re: I'm in doctor hell
« Reply #26 on: December 05, 2011, 11:54:03 AM »
No, it's the Reyataz that is well known to do that -- didn't your doctor discuss it with you? Norvir is just a "boosting agent" for the Reyataz, so the increased Reyataz staying in your body now has caused you to have elevated bilirubin which caused the yellowing. In general it's not permanent and will fade over 2-3 weeks. I think something like 5% of patients on this have severe yellowing and switch to something else, but that's really intense yellowing of the skin.

Hmm I see. But is it a permanent thing for these 2-3 weeks? Or does it usually come and go?

Offline Miss Philicia

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Re: I'm in doctor hell
« Reply #27 on: December 05, 2011, 11:55:54 AM »
Hmm I see. But is it a permanent thing for these 2-3 weeks? Or does it usually come and go?

I don't think it comes and goes but every person is different. It's not harming you so what's the issue?
"I’ve slept with enough men to know that I’m not gay"

Offline Rockin

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Re: I'm in doctor hell
« Reply #28 on: December 05, 2011, 11:58:41 AM »
I don't think it comes and goes but every person is different. It's not harming you so what's the issue?

Well in my case lack of disclosure...I may have to come up with some excuse for this.

Offline Miss Philicia

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Re: I'm in doctor hell
« Reply #29 on: December 05, 2011, 12:10:34 PM »
Well in my case lack of disclosure...I may have to come up with some excuse for this.

I'm sure you can be creative. Certainly there must be other medications that cause elevated bilirubin but I'll leave you to research that.
"I’ve slept with enough men to know that I’m not gay"

Offline Ann

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Re: I'm in doctor hell
« Reply #30 on: December 05, 2011, 12:12:07 PM »
Rockin, chances are that nobody else will notice. Quite a few here have mentioned that they were the only ones to notice and nobody ever said a thing to them about it.

If they do, shrug your shoulders and say "I dunno. Maybe I'll see my doctor if it continues." Don't give it any importance and others won't either.
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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 Rockin

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Re: I'm in doctor hell
« Reply #31 on: December 05, 2011, 02:01:59 PM »
Rockin, chances are that nobody else will notice. Quite a few here have mentioned that they were the only ones to notice and nobody ever said a thing to them about it.

If they do, shrug your shoulders and say "I dunno. Maybe I'll see my doctor if it continues." Don't give it any importance and others won't either.

I know I know, you're right. I'm not really concerned about strangers or co-workers...my biggest concern is family. Like I said, they were witnesses to my pneumonia crisis and of course they got suspicious about the whole thing. I wouldn't mind telling my mom or dad but I don't want them to be concerned about me all the time, I can handle this by myself.

Offline newt

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Re: I'm in doctor hell
« Reply #32 on: December 05, 2011, 05:02:49 PM »
If no yellowing is a must and efavirenz based combos  (eg Sustiva, Atripla) are out why not just go for something else like Prezista (1 x day) or Isentress (2 x day) as the key drug?

I take my meds wherever, no-one ever notices, there's always someone to hole up for a minute or two.

- matt
"The object is to be a well patient, not a good patient"

Offline eric48

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Re: I'm in doctor hell
« Reply #33 on: December 05, 2011, 05:51:34 PM »
took me for a year to become UD... so no sweat, some people just need more time.

The US guidelines is not providing a strict pattern that the viral decay should normally follow.

On the other hand, where I live , our govt has issued a set of checkpoints and if the targets are not reached then the patients must be referred to an expert team of virologists. if, on the other hand you pass the check points, then you are in the clear.

the value below are , IMHO very strict and conservative, you may want to use them in your argumentation.

here they are:

CHECKPOINTS
***********
Here, targets are
- decrease of 1 log after one month
- decrease of 2 log and/or < 400 after 3 months
- <50 after 6 months

hope this helps

Eric

NVP/ABC/3TC/... UD; CD4 > 1000; CD4/CD8 ~ 2.0   safety stock : 2 months

Offline Rockin

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Re: I'm in doctor hell
« Reply #34 on: December 07, 2011, 10:21:00 AM »
If no yellowing is a must and efavirenz based combos  (eg Sustiva, Atripla) are out why not just go for something else like Prezista (1 x day) or Isentress (2 x day) as the key drug?

I take my meds wherever, no-one ever notices, there's always someone to hole up for a minute or two.

- matt


Well...my doctors told me my best choices for the moment would be this combo or Kaletra instead of Norvir. They never said anything about Prezista, maybe it's not available here.

If the yellowing goes away then fine, I can put up with it for a while. If it doesn't then I don't know...one person already noticed it. It's not intense at the moment...but it is noticeable if you look closely.

Offline route_66

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Re: I'm in doctor hell
« Reply #35 on: December 08, 2011, 12:04:03 PM »
Sou médico e soropositivo
Procure a opinião de um outro médico.Aí no Rio tem a Márcia Rachid que é bem respeitada.
Está na hora de cobrarmos do nosso governo novas drogas!!!

Offline Rockin

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Re: I'm in doctor hell
« Reply #36 on: December 08, 2011, 02:12:29 PM »
Sou médico e soropositivo
Procure a opinião de um outro médico.Aí no Rio tem a Márcia Rachid que é bem respeitada.
Está na hora de cobrarmos do nosso governo novas drogas!!!

Como entro em contato com ela, sabe?

Offline route_66

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Re: I'm in doctor hell
« Reply #37 on: December 08, 2011, 02:50:20 PM »
É só procurar o tel dela na net
Um amigo meu trata com ela e gosta muito
Eu vou ao Rio para consultar com ele

Offline route_66

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Re: I'm in doctor hell
« Reply #38 on: December 08, 2011, 02:54:02 PM »
É só procurar o tel dela na net
Um amigo meu trata com ela e gosta muito
Eu vou ao Rio para consultar com ela

Offline newt

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Re: I'm in doctor hell
« Reply #39 on: December 08, 2011, 04:43:44 PM »
Quote
If the yellowing goes away then fine, I can put up with it for a while. If it doesn't then I don't know

I found drinking more water helped, but this is completely unscientific, just my experience.

- matt
"The object is to be a well patient, not a good patient"

Offline Rockin

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Re: I'm in doctor hell
« Reply #40 on: December 08, 2011, 05:27:05 PM »
I found drinking more water helped, but this is completely unscientific, just my experience.

- matt


It's not actually...I read some articles online from doctors and they say the same thing. I just don't know HOW much I'd have to drink.

How long does this lasted for you? Or is it still going on?

Offline GSOgymrat

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Re: I'm in doctor hell
« Reply #41 on: December 08, 2011, 05:52:07 PM »
I have been on Reyataz for several years. I still have mild yellowing of the skin that comes and goes from elevated bilirubin. From what I have been told it is not harmful and is nothing that anyone would notice except myself; my partner can't even tell. If you have a day where you feel particularly yellow try wearing a yellow shirt; if you are like me your skin with look pink in contrast.

Offline Rockin

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Re: I'm in doctor hell
« Reply #42 on: December 08, 2011, 06:15:55 PM »
I have been on Reyataz for several years. I still have mild yellowing of the skin that comes and goes from elevated bilirubin. From what I have been told it is not harmful and is nothing that anyone would notice except myself; my partner can't even tell. If you have a day where you feel particularly yellow try wearing a yellow shirt; if you are like me your skin with look pink in contrast.

Actually I don't think my skin looks yellow...it's really just my eyes...for the moment at least.

Offline newt

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Re: I'm in doctor hell
« Reply #43 on: December 08, 2011, 06:26:42 PM »
It was 3-4 glasses of water I drank.

In the end I switched to darunavir cos it wouldn't go away, the yellow eyes on and off, and I was staying in and drinking/not exercising. I know lots of people who, after the first few weeks, have zero issues with yellowing on atazanavir.

- matt
"The object is to be a well patient, not a good patient"

Offline Rockin

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Re: I'm in doctor hell
« Reply #44 on: December 09, 2011, 09:59:07 AM »
It was 3-4 glasses of water I drank.

In the end I switched to darunavir cos it wouldn't go away, the yellow eyes on and off, and I was staying in and drinking/not exercising. I know lots of people who, after the first few weeks, have zero issues with yellowing on atazanavir.

- matt


I see. I usually drink lots of water so no problem. I've already talked to my doctor to see if there's anything we can change. I read that there's another med that acts as a booster for Atazanavir and that doesn't cause this particular side effect, don't remember if it's darunavir.

Offline Rockin

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Re: I'm in doctor hell
« Reply #45 on: December 10, 2011, 11:44:41 PM »
So I read an article online about Fosamprenavir and how it can subsitute Atazanavir in this current combo and doesn't cause the yellowing problem. And my doctor said it might be a solution. Anyone familiar with this med?

Offline buginme2

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Re: I'm in doctor hell
« Reply #46 on: December 10, 2011, 11:58:16 PM »
So I read an article online about Fosamprenavir and how it can subsitute Atazanavir in this current combo and doesn't cause the yellowing problem. And my doctor said it might be a solution. Anyone familiar with this med?

Fosamprenavir is listed as an "alternative" treatment per US guidlines.  Your current treatment of Reyataz/Norvir and Truvada is listed as a "preferred" treatment.

You state you are already resistant to Efavirenz (an possibly other NNRTI's). 

1.  If you were going to change off Reyataz I would try to change to another "preferred" regimen such as Prezista or Raltegravir before moving on to an alternative treatment (of course they may or may not be available were you are).

2.  I would stick it out with the Reyataz.  You just started on it and your main side effect is the yellow eyes.  Thats a common problem and many times it fades away and is no longer noticeable. 

IMO I wouldnt want to move through meds so fast, I would try to give it some time to see if the side effect lessoned..especially if you already have some resitance issues.

Offline Rockin

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Re: I'm in doctor hell
« Reply #47 on: December 11, 2011, 12:51:25 AM »
Fosamprenavir is listed as an "alternative" treatment per US guidlines.  Your current treatment of Reyataz/Norvir and Truvada is listed as a "preferred" treatment.

You state you are already resistant to Efavirenz (an possibly other NNRTI's). 

1.  If you were going to change off Reyataz I would try to change to another "preferred" regimen such as Prezista or Raltegravir before moving on to an alternative treatment (of course they may or may not be available were you are).

2.  I would stick it out with the Reyataz.  You just started on it and your main side effect is the yellow eyes.  Thats a common problem and many times it fades away and is no longer noticeable. 

IMO I wouldnt want to move through meds so fast, I would try to give it some time to see if the side effect lessoned..especially if you already have some resitance issues.

You're right bug...I think I'm going to stick with it for a while. The side effect might be temporary. Let's see how this plays out.

But do you know why Fosamprenavir is still listed as alternative? Is it new?

Offline buginme2

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Re: I'm in doctor hell
« Reply #48 on: December 11, 2011, 10:00:13 AM »
I beleive it is listed as an alternative because the preferred regimens (Reyataz and Prezista) are newer with fewer side effects.   I could be wrong though.  I don't know the specifics on why they classified it as alternative.

Offline Miss Philicia

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Re: I'm in doctor hell
« Reply #49 on: December 11, 2011, 10:11:54 AM »
Fosamprenavir, though FDA approved only 8 years ago, is actually a reformulation of an older drug Agenerase which came out in the late 90's, so it's even older than Kaletra. I've been on a lot of PI's yet I was never on either of these two. I think it's an "alternative" treatment because it has more of tendency to raise lipid panel numbers and possibly thought to have more of a propensity to have lipodystrophy issues than newer PI's like Reyataz and Prezista. Since many patients already have cholesterol issues due to diet, obviously one doesn't want to take a medication that makes that any worse.
"I’ve slept with enough men to know that I’m not gay"

 


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