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Author Topic: Newly diagnosed in India  (Read 3339 times)

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Offline IndianPoz

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Newly diagnosed in India
« on: April 07, 2014, 12:03:55 PM »
I have lived in NJ(USA) for many years but am on an extended stay in Mumbai, India since last few months. I am 54. I went for a regular yearly check-up on March 28th & when I went to pick up my reports on March 29th, I was told my ELISA HIV test was positive.
I immediately got in touch with a friend in NYC and a couple of friends in Mumbai to find some resources, including an HIV specialist. I met with him last Wednesday & he ordered some tests.
This morning my HIV positive status was confirmed by Western Blot. My VL is 17065 and CD4 count is 201.
My doctor has put me on Trustiva(aka Atripla, in the US). I just took my first pill at 8pm India time - about an hour and a half ago.

I have been overwhelmed since a week now and I have many questions. I found this forum a couple of days ago and liked what I read. I was waiting for confirmation before I start posting.

I'm still trying to figure how I got this. Even though I am gay, I have lived in the US since the mid-80s so being safe, I thought, was ingrained in me. I have been careful all through the years since then and am still always safe - so I can't figure out how I got it. However, the bottom line is I have it now & I need to treat it and get better.

My biggest concern is the side-effects of the meds. I guess I will find out soon. I will really appreciate if people on Atripla can let me know what to expect.

I have and will have many many questions, but I will post them gradually. I'm sur I'll need lots of help. For now, I just wanted to introduce myself and become a part of this forum.
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline Jeff G

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Re: Newly diagnosed in India
« Reply #1 on: April 07, 2014, 12:46:43 PM »
Welcome to the forum . If you take your Atripla at night before bed at least 2 hours after a fatty meal you will negate or reduce any side effects you may have .

Its ok to have a snack but just avoid fatty foods 2 hours either side of the dose . Many people take that combo and never suffer any side effects . Its a very forgiving and potent combo but be sure to watch out for anything changes in your mental health such as depression or decreased sense of well being . Also, expect the best and that may be what you get . Best of luck and welcome to the forum . 

Online Theyer

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Re: Newly diagnosed in India
« Reply #2 on: April 07, 2014, 05:37:13 PM »
Welcome, You have found a good place for your ? and if you wish a new group off friends. Are you now full time in India or do you plan on returning to the U.S.A ?Ah on closer reading I see you are on an extended stay.

It reads that you have a network off friends in Munbai and there have been other members based there and in India , hopefully they will be dropping by soon.

How is your physical health at the moment?

Look forward to reading your posts
take care
m

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline mecch

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Re: Newly diagnosed in India
« Reply #3 on: April 07, 2014, 05:42:07 PM »
Hi there. Sorry for the shocking news.
I got HIV i my 40s and like you, couldn't figure out my risk but obviously there was one. All those years neg, then pos.
Speaking of, is this your first HIV test ever? If you are wondering how or when you got infected, can you trace it to a time frame since a last negative test? 
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #4 on: April 08, 2014, 12:43:54 AM »
Thanks for the responses everyone.
Mecch: I got tested for HIV every year & was negative. The last negative test I got was in 2013! So it had to be sometime in the last one year.
Theyer: I was on an extended stay here in India and was hoping to return soon. However, now with this diagnosis I will need to decide what to do. I think I will wait a while & stick around in India before I return to the US.

So, the doctor's assistant, who gave me instructions on how to take my medication, told me to take the it at 8pm along with some food. I did that last night but after a couple of hours I started sweating a lot and was quite dizzy. It eased up after another hour or so but during the period I felt dizzy I had to lie down. I slept fine at night and don't remember any dreams. Now, in the morning I feel a bit weak. This seems like a very potent drug!

Based on the articles on this site, this drug needs to be taken on an empty stomach and at bedtime. I guess if I took it at bedtime, the tolerance of dizziness would be much better. I'm not sure why they recommended I take it at 8pm but I will speak to the doctor today and check.

I want to know if it will be fine to take the drug at 11pm tonight, instead of 8pm which I did last night. I was told to take it at the same time every night. I am concerned if I take it 3 hours later tonight I might develop resistance to it. Please let me know what you think.

Also, one of the articles on this site does not recommend Atripla for starting someone on ART. Now that I have have started taking it since last night, will it be advisable to speak with my doctor to change the medication already?
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline mecch

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Re: Newly diagnosed in India
« Reply #5 on: April 08, 2014, 08:53:06 AM »
The drug can be taken with a light snack, or on an empty stomach.
Avoid taking it with a fatty, heavy snack, or meal.
You can choose any time of day for your daily dosing.  Lots of time they recommend before bed, because it works well for people - they aren't awake for dizziness or whatever.

Starting any HAART can be something a person notices.. Atripla is not any more or less "potent" than any other combination. 

I recommend that you don't need to worry about switching combinations just a few days into your first combo. 
As I said, any combo could be something you "notice" the first weeks, before it fades to the background.   If you have complicated side effects, that is when you need to discuss with the doctor.

I am not an expert but as far as I know, Atripla is first-line choice of treatment in many countries.  What article said it wasn't? Link please. 

Atripla isn't a good choice for a few people - anxious or depressed. Otherwise lots of people are quite happy on it for years.

Eventually you might want a different combo, or need one.  It really all depends.

You might want to go investigate what drugs are available to you, anyway, in India, at and at an affordable price to you.

Timing of doses:  taking it the same time is important for combos when you first start treatment.  Later on, when a person is undetectable, SOME combos, like atripla, are forgiving, and hours difference each day for the timing, isn't a problem. 

As for your case, I doubt switching the time 2 or 3 hours, one time, means anything.

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

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #6 on: April 09, 2014, 12:42:53 AM »
Thanks mecch :)

I took the pill at 10pm last night and went to bed around 11:30pm. I noticed it takes about two hours for the drug to kick-in. Since I was in bed, it was definitely more tolerable than the previous night. However, the feeling of weakness/slight dizziness in the morning today is a bit worse.

I guess this is all the first week or so and these symptoms will ease as more time goes by.

The article I read was titled 'Antiretroviral Therapy in 2014' in Positively Aware, but it was one doctors opinion that he would not put any new person on Atripla. I do understand that it is the drug of choice in many countries, including the US.

As far as the costs go, Trustiva/Atripla cost in India is not bad at all - it is quite affordable. I think it is around $50 USD for one month supply. I will, in due course, ask about which other drugs are available here in India and the costs involved. It is always good to keep that information handy.
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline mecch

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Re: Newly diagnosed in India
« Reply #7 on: April 09, 2014, 05:12:19 AM »
http://www.positivelyaware.com/2014/14-03/antiretroviral-2014.shtml

Yes the doc has good arguments.  But a person has to be able to afford the treatment.  All these new molecules are not available in every country and at an affordable price.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline pittman

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Re: Newly diagnosed in India
« Reply #8 on: April 10, 2014, 12:00:59 AM »
Atripla is still very common for treatment naive patients.  There are some who do experience the side effects around dizziness and fatigue for the first week or two as their body adjusts. There are a much smaller group that continues to have side effects and may choose to switch.

For myself, I was dizzy for the first few nights I took it! and a bit tired. Now, I can take it whenever without any noticeable side effects.

It is not recommended to take it with food. Either wait 2 hours after eating, or wait to eat an hour after taking it. The reason is that it actually can make the levels absorbed higher, especially with higher fat content in your food.

Find the combo that works for you, but don't be too concerned about other options if you are already on Atripla and it's working for you. (Two weeks may give you a better feel for how the side effects really are for you.)

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #9 on: April 11, 2014, 12:21:54 AM »
mecch: thanks for posting the link :)
pittman: great advice. I plan to do exactly that.

It's been four days now since I've been on Atripla, and it is getting better. I take it around 10 or 10:30pm and go about doing whatever I have to do. Whenever the first signs of dizziness shows up, I go to bed. I have been sleeping fine. Mornings still feel a bit 'cloudy' but less so each day. I'm quite optimistic that these symptoms will go away soon & I'll be able to take this pill at any time.

I had one question on drinking alcohol while on Atripla. I'm a social drinker and drink either beer or wine - never more than one or two glasses/pints. Last night I was out with friends but avoided drinking totally. Is is ok to drink a bit? If yes, is it better to drink before or after taking the pill?
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline Ann

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Re: Newly diagnosed in India
« Reply #10 on: April 11, 2014, 05:05:41 AM »
Drinking alcohol in moderation is fine. Most people I know who take Atripla take it when they get home and are going to bed after drinking. Those dizzy side effects you're feeling will only intensify if you take your Atripla before drinking, so I wouldn't recommend it.

The main danger where alcohol is concerned is if you are drinking every day and forgetting to take your pill due to being drunk. You don't want to miss more than the very occasional dose, so as long as your drinking doesn't interfere with remembering your meds, go for it.

All things in moderation, including moderation. ;)

Ann
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Offline pittman

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Re: Newly diagnosed in India
« Reply #11 on: April 11, 2014, 01:02:47 PM »
There is no direct interaction between Atripla and alcohol, so it's not quite like Tylenol (acetaminophen).

However, your liver and kidneys are going to be working a bit harder when taking the drug. Alcohol also puts them to work more than other things.  Moderating the drinking is a good idea, but completely abstaining would be unnecessarily extreme. Some social drinking is fine.

Just no wild college fraternity style indulgences that leave you blacked out. :-) 

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #12 on: April 12, 2014, 12:33:40 AM »
Thanks Ann & pittman for some sound advice regarding alcohol :)

I've never been big on drinking anyways and can go months without it, so it is not a big deal for me even if I have to stop it. However, I will not do that and drink only in moderation - always before I take Atripla.

I wasn't aware that Tylenol has a direct interaction with Atripla. I should read up on such stuff. I used to take Nexium and a statin for a few years and my doctor asked me to continue with those and I'm doing that. Is there any website that can give me information on drug interactions with Atripla?
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline pittman

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Re: Newly diagnosed in India
« Reply #13 on: April 12, 2014, 08:52:27 AM »
I wasn't aware that Tylenol has a direct interaction with Atripla. I should read up on such stuff. I used to take Nexium and a statin for a few years and my doctor asked me to continue with those and I'm doing that. Is there any website that can give me information on drug interactions with Atripla?

Atripla info:
http://packageinserts.bms.com/ppi/ppi_atripla.pdf

There are not a lot of drug interactions to be worried about.  The list is on the link above.

As for Tylenol and alcohol, read the warnings on the package insert. My use of the word "direct" may be a bit misleading here, so what I will say is that there have been liver toxicity cases tied to both ovedosing on Tylenol (which is surprisingly easy to do) and with combined alcohol consumption.  NPR somewhat recently did a one hour show on the dangers of accidental misuse of Tylenol and the deaths that occurred.

Online Theyer

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Re: Newly diagnosed in India
« Reply #14 on: April 13, 2014, 05:06:17 AM »
Hello , in the UK the pharmacists at the hospital I attend are responsible for the study of drug interaction, s. So I know what to do with any ? I have, I do not expect my HIV Doc to also be expect in this and know that he also uses the pharmacists.

There will be pharmacists in Mumbai that Doctors use , so discuss it with your Doctor ,then in the future you will have the process understood, just a bit off research . You do not have to become an expert, but it is good to find out who the experts are.

"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #15 on: April 14, 2014, 02:27:07 AM »
Thanks pittman & Theyer.

It is good to have some knowledge of drug interactions. For more complex interactions, I will always rely on my doctor.

Theyer: My doctor's office also is my pharmacist - they dispensed my medication & will continue to do so in the future. My doctor has a large staff and they also tell you about all drug interactions. For me it seems like a good thing that I just have to make one call for any questions I have or if I need anything.

It's been one week since I started taking Atripla. I take it around 11pm now. The side-effects have reduced quite a bit & I can tolerate it much better than the first couple of days :) the good thing is there has been no effect on my sleep at all - I sleep as well as I did before I started taking this medication.
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #16 on: April 20, 2014, 01:29:49 AM »
Hi All,

Three weeks after diagnosis & two weeks after starting treatment, I'm mostly fine and trying to settle into living with HIV. However, there are a couple of things I still think about more than I should.

1) is there any way of knowing when I could possibly have sero-converted? Is there any test? My low CD4 count worries me. Since I tested negative in 2013, how can the CD4 count be so low if the infection is relatively recent? I don't even remember any recent illness that might indicate infection. Could it be I was infected a while ago & had false negative reports in the past?

2) I'm absolutely convinced my transmission could have been only as a result of receiving oral sex. Is that even possible? Are there others, in these forums, who feel that way?
I did get blood transfusion twice almost 18 years ago, but I have tested negative several times since then.

I might sound like a broken record and for many who have been living with HIV for long these might be trivial - my apologies to them. I just thought I will post here - not necessarily looking for answers, but just a way to vent :)

Two weeks into taking Atripla around bedtime (between 11pm and midnight) the side effects are much less. I still feel slight morning dizziness for a couple of hours. I hope that and a few minor side effects will go away in the next few weeks.

Thanks for listening.
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline zach

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Re: Newly diagnosed in India
« Reply #17 on: April 20, 2014, 05:13:56 AM »
hey, welcome, and hope you are feeling good now, and stay that way

you're looking backward, and thats ok. all normal, all part of the process. gear up to look forward, to look around at where you are right now. and move into the future

so, your questions

question 1. no, there is no way for you to know when you were infected. at this point, ask yourself, why does it matter? it is an unanswerable question, that will not help you going forward. you say you have tested several times. when was the last time you tested negative? there is your window.

edited to add: i just noticed you say you tested negative last year. mmkay, i think thats possible. as i understand, cd4 will take a big hit at infection, the body will adjust, return to normal, and the virus will sit and wait, lurking to come out to play. cd4 then dropping gradually until an acute OI sub 200, but all that is anecdotal.

question 2. you are absolutely wrong. your infection was not the result of oral sex. go ahead and make peace that at some point in the past, you did something very high risk. and it paid off. self acceptance is important. you say you had a blood transfusion. maybe that, just maybe. probably not. maybe.

post away man. i totally feel you about just venting sometimes, not really needing answers. i do that all the time. i use this board to dump out emotions i need to say to someone or something, but really shouldn't to the people near me. it is therapeutic.
« Last Edit: April 20, 2014, 05:20:53 AM by zach »

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #18 on: April 21, 2014, 01:19:02 AM »
Thanks zach for responding - everything you say makes a lot of sense. I say the same to myself when I'm thinking rationally, but sometimes I don't and these thoughts creep up.

Yes, it doesn't matter when I got infected. I just need to get treated and feel better. I'm on my way to doing just that.

The 'how' question - even though you say I'm wrong - is a bit harder for me but it am getting better about letting it go. Sorry about being explicit, but I have never been f**ked ever - not once, in my life. In the last one year I have not even f**cked anyone and in the past I have never ever f**ked anyone without a condom - not once. I have never done drugs (hell I have never ever even smoked a cigarette) & I don't drink much alcohol to ever have done something that I don't remember. Hence, my conviction that if I got infected in the last one year it has to be through receiving oral sex. BUT - you are right, it doesn't matter now.

Once again thanks for listening and caring to respond. I really appreciate it :)
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline zach

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Re: Newly diagnosed in India
« Reply #19 on: April 21, 2014, 02:35:12 AM »
lets posit for a moment you are able to glean that answer. you know how, you know all the who what when where why.

my question, what will you do with that information? will it help you?

don't let that gnaw at you me. thats gremlins. not a healthy line of thought... but perfectly normal right now, look to the day when you simply let go of question

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #20 on: April 22, 2014, 12:37:10 AM »
Yes zach, you are absolutely right. In my head, I know that too. I will just need to work on getting past it :)

Thanks, once again, for your encouraging words....
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #21 on: April 29, 2014, 12:38:03 AM »
Hi,

After 22 days on Atripla, I seem to be developing rash. I have been feeling itchy last couple of days and last night I saw a small area on the back of my right hand had some red hive-like rash. That has gone this morning but the itchiness still persists. I do feel itchy in other parts of my body as well, but can't see any hives or rash as yet. It kinda feels like my nerve-endings are painful/itchy.

I know rash is one of the side-effects of Atripla but most people seem to get it in the first few days. Is it normal to get it three weeks into starting treatment? I just hope it does not get worse than it is now & that it goes away. All my other symptoms from Atripla seem to have gone away and all I have is a slight bit of dizziness in the morning - which also seems to be getting better each day.

I will call my doctor's office today to check, but I thought I will post here to see if I can get some advice here.

I did not want to start a new thread so posting here - I hope it is fine.

Thanks
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Online Theyer

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Re: Newly diagnosed in India
« Reply #22 on: May 01, 2014, 07:35:18 AM »
You have already done what I would off adviced and called the Doc, it will work out just get her/him to look at it. All the Best.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline IndianPoz

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Re: Newly diagnosed in India
« Reply #23 on: May 02, 2014, 09:17:22 AM »
Thanks Theyer. I met the doctor this morning & he said he doesn't think the rash was due to Atripla since I got it just once. He said that if that was the reaction of my body to this drug, I would have seen it daily for some time before it went away. So, I guess getting the rash just one night was an anamoly & it could have been due to some other reason.

I will be completing 30 days on Atripla next week and I was expecting my doctor to order some blood tests next week - based on what I have read in these forums. However, he said he wants me to get all the blood tests done when I finish 3 months of taking Atripla. Is that normal?
3/29/2014: ELISA +ve
4/7/2014: WB confirm; CD4-201(20%);VL-17065;started Trustiva/Teevir(Atripla)
8/2/2014: CD4-385(31%); VL < 20 copies/ml

Offline pittman

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Re: Newly diagnosed in India
« Reply #24 on: May 03, 2014, 10:25:37 PM »
I was thinking that many doctors will test your liver and kidney functions fairly soon after starting.  Viral load would the the other typical one.

Testing practices have evolved over the last few years, but it doesn't hurt to discuss it with yr doctor as to why he feels that the nests are not needed yet.

 


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