on med interruption, life has never been this difficult.

[tinberlake]

Hello everyone,

i read this post regularly and found they are so many lovely and caring people. Here i am also calling out for your advice.

Currently i am on medication interruption.

I was contracted HIV Aug 2013. first  years lab was good  until last year I started party drugs (not sure if that was the cause but CD4 went down fast and felt sick)

started medication last year and  after first month VL has been undectable, CD4 700+ and now CD4 900

11 dec 2015-  apr, 2016, triumeq
some night sweats but generally ok with the medication
very active life, work, gym, parties en dancing
I used xtc and ktamine in weekend parties.
Apr – 23 jun 2016, triumeq

End March had A party almost 2 days no sleep (mixed drug abuse); afterwards went for sports; liver function was tested a bit high..

Soon after got bad night sweats and extrem tireness, each day worse, had to quite sportschool

From Apr to July, was often super tired, no interest in nothing, super low (depressed) and still night sweats

and super dry mouth,  but It actually got  better right before I switched to Genvoya

24 jun to 6 Sep 2016, Genvoya

 Energy better but new sore muscle and strange sweats.

but experienced few times unbearable heart (chest) pain.

Also feeling like acid poisoned (synptom similar to lactic anidosis, but they did the lactic test it was normal), but still sore muscle and very dizzy and sleepy. Was diffciult at work. i felt i couldnot carry on like that.

Advised by the hospital i completely stopped on 7 Sep medication.

------------------------------
after stop medication, generally all the side effects gradually disappeared
but now 2nd week without medication felt bad, the feeling almost like the acute infection. feel really desprate here,

I started to think it’s not the problem of  medication because first few months I felt good with trimeq.

 
here are my questions:
maybe I damanged myself something in my body?  Coz I had since quite some time now and then pain in right abdomin.(right beneath the rib but they used B-echo and did not see any abnormality and also liver function is normal) if something wrong with my liver, maybe that is the end.

i did not start medication until last year but i had 2 years HIV already (CD4 test was always above 500) maybe that did some harm to my organ like the liver? so now i can't process the pill properly?

last quesiton, shall i re-start the medication now if yes and which one??   the nurse said she thinks i could stop for few months coz i had so much side effects and it 's not good to start and then again stop. i will still see the doctor over few days

Thanks

[Jim Allen]

started medication last year and  after first month VL has been undectable, CD4 700+ and now CD4 900

11 dec 2015-  apr, 2016, triumeq
some night sweats but generally ok with the medication
very active life, work, gym, parties en dancing
I used xtc and ktamine in weekend parties.
Apr – 23 jun 2016, triumeq

End March had A party almost 2 days no sleep (mixed drug abuse); afterwards went for sports; liver function was tesa bit hted igh..

Soon after got bad night sweats and extrem tireness, each day worse, had to quite sportschool

From Apr to July, was often super tired, no interest in nothing, super low (depressed) and still night sweats

and super dry mouth,  but It actually got  better right before I switched to Genvoya

24 jun to 6 Sep 2016, Genvoya

 Energy better but new sore muscle and strange sweats.

but experienced few times unbearable heart (chest) pain.

Also feeling like acid poisoned (synptom similar to lactic anidosis, but they did the lactic test it was normal), but still sore muscle and very dizzy and sleepy. Was diffciult at work. i felt i couldnot carry on like that.

Advised by the hospital i completely stopped on 7 Sep medication.

------------------------------
after stop medication, generally all the side effects gradually disappeared
but now 2nd week without medication felt bad, the feeling almost like the acute infection. feel really desprate here,

I started to think it’s not the problem of  medication because first few months I felt good with trimeq.

Hi

I think if you have not already told the doctor this part of the story than in a few days you should. Ill be honest I am not sure why you switched to start with. Personally I would have first dropped the drugs and party's and any alcohol waited a few months instead of jumping the switching meds train.

Q 1/2 - God knows, I suspect not but who am i.
Talk to the doctor and keep working on finding the cause if you are still sick.

Q 3 - If it was me, I would talk to the doctor and tell them all the details of what has been going on during the past year so they know what has been happening.

On a final thought. Look you should be fine but it really is up to you, I think you really need to start taking better care of yourself and stop all the messing about.

With a hug.

Jim

[Tonny2]

            OJO        HELLO THERE, I DON'T KNOW HOW OLD YOU ARE, BUT, SOMETIMES WE HAVE TO CHOOSE BETWEEN HAVING A HEALTHIER LIFE OR KEEP DOING WHAT WE USED TO DO BEFORE THE HIV DX...WE HAVE TO MAKE SOME CHAMGES IN OUR BEHAVIOR, ESPECIALLY IF WE ARE PUTTING DRUGS OR ALCOHOL IN OUR BODIES, OUR POOR LIVER IS GOING THROUGH A LOT WITH THE MEDS, THEN WE GAVE IT MORE STRESS BY ABUSING DRUGS AND ALCOHOL, I'M NOT SAYING WE CAN NOT PARTY, BUT WE HAVE TO BE CONSIDERATE TO OUR BODY...JUST  A THOUGHT

DOES YOUR DOCTOR KNOWS ABOUT YOUR DRUG CONSUMPTION?...IF YOUR LIVER PANEL IS OK, THEM YOUR LIVER IS OK...TALK TO YOUR DOCTOR AND LET HIM KNOW WHAT YOU ARE DOING WITH YOUR LIFE, BE HONEST WITH HIM SO HE CAN FIGURE OUT WHAT'S GOING ON...WATCH OUT, SWITCHING MEDS MIGHT BE A PROBLEM IN THE FUTURE...KEEP US POSTED, BEST OF LUCK...HUGS                               OJ O

[tinberlake]

Dear Jim en Tonny2, i am on my mobile now not quite easy to type so I will put it easlier...My, laptop is not by me Coz sleeping over at a friends place... Simply dare not to sleep alone home these days..
And thx Jim, you also responded so nicely to me in May.

I am 31 and I told my doctor I used  drugs. He  said  it is ok once for a while.. But they dont know how actually it was. Completely mixed stuff...yes I will put all the fact on Thursday when I see him.

I Switched in May Coz I was hoping, since it is a "better"  version of stribld, I would most likely  feel  better... But no. Even worse.

I stopped all drugs since apri but seems alcohol is also an issue. . In juli and Aug I  got so tried and sore muscle Next day If I have taken  alcohol

And why " switching" in the future will be difficult?
.

[Tonny2]

Dear Jim en Tonny2, i am on my mobile now not quite easy to type so I will put it easlier...My, laptop is not by me Coz sleeping over at a friends place... Simply dare not to sleep alone home these days..
And thx Jim, you also responded so nicely to me in May.

I am 31 and I told my doctor I used  drugs. He  said  it is ok once for a while.. But they dont know how actually it was. Completely mixed stuff...yes I will put all the fact on Thursday when I see him.

I Switched in May Coz I was hoping, since it is a "better"  version of stribld, I would most likely  feel  better... But no. Even worse.

I stopped all drugs since apri but seems alcohol is also an issue. . In juli and Aug I  got so tried and sore muscle Next day If I have taken  alcohol

And why " switching" in the future will be difficult?
.

         ojo       HELLO AGAIN...I DON'T WANT YOU TO THINK I'M JUDGING YOU, BUT, NOBODY SAID THAT HAVING HIV WAS EASY, WE HAVE TO DO SOME SACRIFECES, ESPECIALLY THOSE, LIKE YOU, WHO SAID THAT DO DRUGS AND ALCOHOL, AS A MATTER OF FACT, I WAS HAVING DINNER JUST NOW, AND I HAD THREE BEERS, I WAS HAVING SUCH A GREAT TIME THAT I WANTED TO HAVE MORE TO DRINK, BUT. I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS, THAT I LEARNED TO RESPECT MY LUVER, MY MEDS GO THROUGH TO LIVER AS THE BEER, SO, I DO NOT WANT TO ABUSE MY LIVER AND DECIDED TO SAY GOOD BYE (I'VE ALWAYS BEEN A LIGHT WEIGHT DRINKER ANYWAYS), SO, WE, HIV POSITIVE PEOPLE, WE HAVE TO CHOOSE BETWEEN "HAVING FUN" AND RESPECT THE MOST IMPORTANT ORGAN, HIV SPAEAKING....YOU ARE STILL A YOUNG GUY, WE THINK AT THAT AGE, THAT WE ARE INVENCIBLES, BUT THAT'S NOT THE CASE, DID YOU GET HIV FOR BEING "HAPPY"?...WE CAN STILL HAVE FUN BUT ALWAYS CONSIDERING WE ARE DIFFERENT NOW, WE TAKE MEDS WHICH CAN BE HARSH FOR OUR KIDNEYS AND LIVER, SO, WE HAVE TO BE RESPONSIBLES ABOUT WHAT WE PUT IN OUR BODIES...JUST A THOUGHT...I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS AND I TRY NOT TO MIX THEM WITH ALCOHOL, LET ALONE WITH DRUGS, ALTHOUGH I HAVE DONE IT SOMETIMES BUT WITH A BALANCE.

ABOUT SWITCHIN MEDS, YOU SAID YOU WERE ON TRIUMEQ, DUROTAGRAVIR, STRIBID, ELVITEGRAVIR AND NOW GENVOYA, AGAIN SAME INTEGRASE INHIBIDOR, YOU MAY, I EMPHASY, MAY, DEVELOP RESISTANCE TO THIS CLASS OF MEDS, WHAT YOU SHOULD DO IS IF YOU START A TREATMENT, STOP TAKING OTHER THINGS, UNLESS UNTILL YOU KNOW HOW YOUR BODY RESPONDS TO YOUR TREATMENT, NO DRUGS, NO ALCOHOL, ETC, ETC. AFTER YOU KNOW EVERYTHING IS OK, THEN YOU CAN HAVE FUN, BUT YOU HAVE TO RESPECT YOUR BODY...WE ARE IN THIS SITUATION BECAUSE WE ABUSE OUR BODY, TOO MUCH SEX, TOO MUCH DRUGS, TOO MUCH ALCOHOL, I THINK, SO, IF WE HAVE A SECOND CHANCE TO BETTER OUR LIFES, LET'S DO IT, WE CAN STILL HAVE A GOOD LIFE BUT WE HAVE TO BE RESPONSIBLES, IF WE WANT TO HAVE A LONG LIFE...WHY CAN'T YOU SLEEP IN YOUR OWN PLACE, IF YOU DON'T MIND ME ASKING?...WHY YOU FEEL LIKE ACIDOSIS, HAVE YOU GOTTEN IT?, HAVE YOU BEEN CHECKED FOR IT LATELY?...TENOFOVIR MAY CAUSED ACIDOSIS, AT LEAST IN MY CASE, I CAN'T TAKE TENOFOVIR AND ALL THE NEWS DRUGS HAVE IT ;(

OK, I HOPE YOU FIND OUT WHAT THE PROBLEM IS AND IF YOU RE-START MEDS, DO NOT TAKE DRUGS OR NOTHING ELSE THAT PASSES BY YOUR LIVER, GIVE IT A MONTH, CAN YOU SURVIVE WITHOUT DRUGS AND ALCOHOL FOR A MONTH?...BEST OF LUCK...NOT A DOCTOR, JUST SHARING MY 22 YEARS OF EXPERIENCE TAKING MEDS, IT'S BEEN HARD BUT I'M STILL HERE ENJOYING MY LOVED ONES...HUGS                  OJO

[terrymoore]

Hi,
Seems to me that the drugs may not interact well with your meds or with one another if you are mixing. I am assuming you didn`t sleep properly either. So, all those things take a toll on our bodies. We are not INVINCIBLE  - i know it is hard to believe!

I cant really add to the advice you have already received. All i can do is repeat it -  go see your doctor, be HONEST with him, tell him what you have been taking and what you have been doing and give him all the info he needs so that he can make an educated assessment and give you the right advice.
Good luck!

[eric48]

but now 2nd week without medication felt bad, the feeling almost like the acute infection. feel really desprate here

this is to be expected. ARS (acute retroviral syndrome) may appear upon drug interruption. It is exactly a replay of the initial ARS , which sometimes is so minute that is goes unnoticed, and, sometimes is very symptomatic.

if you are the symptomatic type, then, it is likely to happen again and again, if you interrupt meds (long term interruption, aka drug holiday)

Pretty much like your initial ARS, this one will most likely last 2-3 weeks, then disappear.

There is evidence that doing drug holidays , repatedly, in a erratic fashion may lead to resistance.

For a one time instance, you may seek reassurance from your doctor.

Erratic use of meds is not a good idea. That does not mean that your doctor will be mad at you: as the nurse said, it may be a good idea to stop, let things cool down, and restart on a fresh start, when you feel ready.

there is a vast choice of meds , and most likely they will find something that suits you: it is important to be comfortable with ones mads, obviously
take care

[tinberlake]

this is to be expected. ARS (acute retroviral syndrome) may appear upon drug interruption. It is exactly a replay of the initial ARS , which sometimes is so minute that is goes unnoticed, and, sometimes is very symptomatic.

if you are the symptomatic type, then, it is likely to happen again and again, if you interrupt meds (long term interruption, aka drug holiday)

Pretty much like your initial ARS, this one will most likely last 2-3 weeks, then disappear.

There is evidence that doing drug holidays , repatedly, in a erratic fashion may lead to resistance.

For a one time instance, you may seek reassurance from your doctor.

Erratic use of meds is not a good idea. That does not mean that your doctor will be mad at you: as the nurse said, it may be a good idea to stop, let things cool down, and restart on a fresh start, when you feel ready.

there is a vast choice of meds , and most likely they will find something that suits you: it is important to be comfortable with ones mads, obviously
take care

Thansk, dear friend
actually i experience headache and havy chest, which i had also before without med, but not precisely as it when i first got it the fever and ulcer.. i stopped because of the bad side effect, as what i felt.. not that I intended to have a drug holiday.  if my body can well tolerate it then I understood well that i did not need to put a pause to it.. but i have to say the revival of virus feels also quite heavy....

[CaveyUK]

Have to admit I'm surprised that a treatment interruption was recommended, especially as you actually seemed to be okay using Triumeq, on the whole.

Anyway, should you re-start medication? Absolutely. No-Brainer. HIV isn't something to mess with, and the only way it will do damage to your immune system is by not taking medication. You need to be back on something which will suppress the virus down to UD levels, like, yesterday.

As others have said, the illicit drug use was probably at the root of everything you experienced - certainly whilst you were on Triumeq.

XTC will mess with your dopamine level. HIV meds can sometimes increase anxiety or depression in people pre-disposed to it, which certainly can include XTC come-downs. It doesn't sound like you were doing occasional drugs in a somewhat 'controlled' manner either which would probably be okay. Sounds like you were really getting off your head. The two things are almost certainly linked.

I'm no angel myself in this regard in the past, but I'm always acutely aware that what you get is not regulated and could contain anything as well as the core drug. Interactions with HIV drugs are not out of the question either.

Also, unrelated to the drugs, being HIV positive doesn't preclude you from getting other illnesses which could cause some of the things you had. I know folk who have had mono and it's laid them up for weeks and killed their energy for months - thats just one example. Extended illicit drug use and lack of sleep will make it easier to pick up other nasties which can lay you out.

Now you are re-gaining a degree of normality (possible acute symptoms aside from the awakening of the virus, which should pass), it would be a good idea for you to work with your doctor to get a plan together to get back on meds and keep an eye on things. Try to avoid excessive recreational drug use during this period if you can.

But staying off HIV meds is a bad idea, so you need to get this sorted quickly IMO

Best of luck

[tinberlake]

Hi,
Seems to me that the drugs may not interact well with your meds or with one another if you are mixing. I am assuming you didn`t sleep properly either. So, all those things take a toll on our bodies. We are not INVINCIBLE  - i know it is hard to believe!

I cant really add to the advice you have already received. All i can do is repeat it -  go see your doctor, be HONEST with him, tell him what you have been taking and what you have been doing and give him all the info he needs so that he can make an educated assessment and give you the right advice.
Good luck!

Thank you!

, the clinc and the doctor said the drug shall not have interaction with that. but i found out today faimily doctor who i visited did the B echo but it was on the muscles not on the organ...

[Jim Allen]

Okay I don't want sound like utter dick on this thread but I will for a sec.

Your doc said it would not interact. Well I am telling you god knows what your taking when it comes to illegal drugs. Its not like the cook prints a nice little  ingredients list on the side and contact details for feedback, but its good to know your doctor trusts the cook and the dealer to have a only good batches that contain only what they should contain.

I say this with love to you, cut the party drugs and take care of yourself, drop the drink and focus on your health and getting this sorted out. I think the below post is worth reading again.

Jim

         ojo       HELLO AGAIN...I DON'T WANT YOU TO THINK I'M JUDGING YOU, BUT, NOBODY SAID THAT HAVING HIV WAS EASY, WE HAVE TO DO SOME SACRIFECES, ESPECIALLY THOSE, LIKE YOU, WHO SAID THAT DO DRUGS AND ALCOHOL, AS A MATTER OF FACT, I WAS HAVING DINNER JUST NOW, AND I HAD THREE BEERS, I WAS HAVING SUCH A GREAT TIME THAT I WANTED TO HAVE MORE TO DRINK, BUT. I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS, THAT I LEARNED TO RESPECT MY LUVER, MY MEDS GO THROUGH TO LIVER AS THE BEER, SO, I DO NOT WANT TO ABUSE MY LIVER AND DECIDED TO SAY GOOD BYE (I'VE ALWAYS BEEN A LIGHT WEIGHT DRINKER ANYWAYS), SO, WE, HIV POSITIVE PEOPLE, WE HAVE TO CHOOSE BETWEEN "HAVING FUN" AND RESPECT THE MOST IMPORTANT ORGAN, HIV SPAEAKING....YOU ARE STILL A YOUNG GUY, WE THINK AT THAT AGE, THAT WE ARE INVENCIBLES, BUT THAT'S NOT THE CASE, DID YOU GET HIV FOR BEING "HAPPY"?...WE CAN STILL HAVE FUN BUT ALWAYS CONSIDERING WE ARE DIFFERENT NOW, WE TAKE MEDS WHICH CAN BE HARSH FOR OUR KIDNEYS AND LIVER, SO, WE HAVE TO BE RESPONSIBLES ABOUT WHAT WE PUT IN OUR BODIES...JUST A THOUGHT...I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS AND I TRY NOT TO MIX THEM WITH ALCOHOL, LET ALONE WITH DRUGS, ALTHOUGH I HAVE DONE IT SOMETIMES BUT WITH A BALANCE.

ABOUT SWITCHIN MEDS, YOU SAID YOU WERE ON TRIUMEQ, DUROTAGRAVIR, STRIBID, ELVITEGRAVIR AND NOW GENVOYA, AGAIN SAME INTEGRASE INHIBIDOR, YOU MAY, I EMPHASY, MAY, DEVELOP RESISTANCE TO THIS CLASS OF MEDS, WHAT YOU SHOULD DO IS IF YOU START A TREATMENT, STOP TAKING OTHER THINGS, UNLESS UNTILL YOU KNOW HOW YOUR BODY RESPONDS TO YOUR TREATMENT, NO DRUGS, NO ALCOHOL, ETC, ETC. AFTER YOU KNOW EVERYTHING IS OK, THEN YOU CAN HAVE FUN, BUT YOU HAVE TO RESPECT YOUR BODY...WE ARE IN THIS SITUATION BECAUSE WE ABUSE OUR BODY, TOO MUCH SEX, TOO MUCH DRUGS, TOO MUCH ALCOHOL, I THINK, SO, IF WE HAVE A SECOND CHANCE TO BETTER OUR LIFES, LET'S DO IT, WE CAN STILL HAVE A GOOD LIFE BUT WE HAVE TO BE RESPONSIBLES, IF WE WANT TO HAVE A LONG LIFE...WHY CAN'T YOU SLEEP IN YOUR OWN PLACE, IF YOU DON'T MIND ME ASKING?...WHY YOU FEEL LIKE ACIDOSIS, HAVE YOU GOTTEN IT?, HAVE YOU BEEN CHECKED FOR IT LATELY?...TENOFOVIR MAY CAUSED ACIDOSIS, AT LEAST IN MY CASE, I CAN'T TAKE TENOFOVIR AND ALL THE NEWS DRUGS HAVE IT ;(

OK, I HOPE YOU FIND OUT WHAT THE PROBLEM IS AND IF YOU RE-START MEDS, DO NOT TAKE DRUGS OR NOTHING ELSE THAT PASSES BY YOUR LIVER, GIVE IT A MONTH, CAN YOU SURVIVE WITHOUT DRUGS AND ALCOHOL FOR A MONTH?...BEST OF LUCK...NOT A DOCTOR, JUST SHARING MY 22 YEARS OF EXPERIENCE TAKING MEDS, IT'S BEEN HARD BUT I'M STILL HERE ENJOYING MY LOVED ONES...HUGS                  OJO

[tinberlake]

Okay I don't want sound like utter dick on this thread but I will for a sec.

Your doc said it would not interact. Well I am telling you god knows what your taking when it comes to illegal drugs. Its not like the cook prints a nice little  ingredients list on the side and contact details for feedback, but its good to know your doctor trusts the cook and the dealer to have a only good batches that contain only what they should contain.

I say this with love to you, cut the party drugs and take care of yourself, drop the drink and focus on your health and getting this sorted out. I think the below post is worth reading again.

Jim

the community doctor said that (today) quote drug use shall not be the reason for your side effect unquote
well the doctor for HIV did not say that

yeah for sure neither of them  encourage use of party stuff

the community doctor probably only wanted to say, i do experience side effect coz the medication
of course she is not a specilist and i went to her today only to get my echo result so i can bring to the hosptial and turned out it was not done on liver so have to re do it,

and Thanks Jim, i also stopped drugs since apr and alchhol also since few days

[tinberlake]

Okay I don't want sound like utter dick on this thread but I will for a sec.

Your doc said it would not interact. Well I am telling you god knows what your taking when it comes to illegal drugs. Its not like the cook prints a nice little  ingredients list on the side and contact details for feedback, but its good to know your doctor trusts the cook and the dealer to have a only good batches that contain only what they should contain.

I say this with love to you, cut the party drugs and take care of yourself, drop the drink and focus on your health and getting this sorted out. I think the below post is worth reading again.

Jim

the community doctor said that (today) quote drug use shall not be the reason for your side effect unquote
well the doctor for HIV did not say that he just said in very early when i jsut started med that it was to use recreational stuff

of couse not in this way i think....

yeah for sure neither of them  encourage use of party stuff

the community doctor probably only wanted to say, i do experience side effect coz the medication
of course she is not a specilist and i went to her today only to get my echo result so i can bring to the hosptial and turned out it was not done on liver so have to re do it,

[Jim Allen]

yeah for sure neither of them  encourage use of party stuff

My point being that neither of them knows whats in the drugs you took.

Anyhow glad to hear you are cutting out the drugs/drink and I hope that things improve and you have good results when they re-do the echo and that can get back onto a treatment when you are ready.

Do keep us posted.

Jim

[tinberlake]

         ojo       HELLO AGAIN...I DON'T WANT YOU TO THINK I'M JUDGING YOU, BUT, NOBODY SAID THAT HAVING HIV WAS EASY, WE HAVE TO DO SOME SACRIFECES, ESPECIALLY THOSE, LIKE YOU, WHO SAID THAT DO DRUGS AND ALCOHOL, AS A MATTER OF FACT, I WAS HAVING DINNER JUST NOW, AND I HAD THREE BEERS, I WAS HAVING SUCH A GREAT TIME THAT I WANTED TO HAVE MORE TO DRINK, BUT. I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS, THAT I LEARNED TO RESPECT MY LUVER, MY MEDS GO THROUGH TO LIVER AS THE BEER, SO, I DO NOT WANT TO ABUSE MY LIVER AND DECIDED TO SAY GOOD BYE (I'VE ALWAYS BEEN A LIGHT WEIGHT DRINKER ANYWAYS), SO, WE, HIV POSITIVE PEOPLE, WE HAVE TO CHOOSE BETWEEN "HAVING FUN" AND RESPECT THE MOST IMPORTANT ORGAN, HIV SPAEAKING....YOU ARE STILL A YOUNG GUY, WE THINK AT THAT AGE, THAT WE ARE INVENCIBLES, BUT THAT'S NOT THE CASE, DID YOU GET HIV FOR BEING "HAPPY"?...WE CAN STILL HAVE FUN BUT ALWAYS CONSIDERING WE ARE DIFFERENT NOW, WE TAKE MEDS WHICH CAN BE HARSH FOR OUR KIDNEYS AND LIVER, SO, WE HAVE TO BE RESPONSIBLES ABOUT WHAT WE PUT IN OUR BODIES...JUST A THOUGHT...I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS AND I TRY NOT TO MIX THEM WITH ALCOHOL, LET ALONE WITH DRUGS, ALTHOUGH I HAVE DONE IT SOMETIMES BUT WITH A BALANCE.

ABOUT SWITCHIN MEDS, YOU SAID YOU WERE ON TRIUMEQ, DUROTAGRAVIR, STRIBID, ELVITEGRAVIR AND NOW GENVOYA, AGAIN SAME INTEGRASE INHIBIDOR, YOU MAY, I EMPHASY, MAY, DEVELOP RESISTANCE TO THIS CLASS OF MEDS, WHAT YOU SHOULD DO IS IF YOU START A TREATMENT, STOP TAKING OTHER THINGS, UNLESS UNTILL YOU KNOW HOW YOUR BODY RESPONDS TO YOUR TREATMENT, NO DRUGS, NO ALCOHOL, ETC, ETC. AFTER YOU KNOW EVERYTHING IS OK, THEN YOU CAN HAVE FUN, BUT YOU HAVE TO RESPECT YOUR BODY...WE ARE IN THIS SITUATION BECAUSE WE ABUSE OUR BODY, TOO MUCH SEX, TOO MUCH DRUGS, TOO MUCH ALCOHOL, I THINK, SO, IF WE HAVE A SECOND CHANCE TO BETTER OUR LIFES, LET'S DO IT, WE CAN STILL HAVE A GOOD LIFE BUT WE HAVE TO BE RESPONSIBLES, IF WE WANT TO HAVE A LONG LIFE...WHY CAN'T YOU SLEEP IN YOUR OWN PLACE, IF YOU DON'T MIND ME ASKING?...WHY YOU FEEL LIKE ACIDOSIS, HAVE YOU GOTTEN IT?, HAVE YOU BEEN CHECKED FOR IT LATELY?...TENOFOVIR MAY CAUSED ACIDOSIS, AT LEAST IN MY CASE, I CAN'T TAKE TENOFOVIR AND ALL THE NEWS DRUGS HAVE IT ;(

OK, I HOPE YOU FIND OUT WHAT THE PROBLEM IS AND IF YOU RE-START MEDS, DO NOT TAKE DRUGS OR NOTHING ELSE THAT PASSES BY YOUR LIVER, GIVE IT A MONTH, CAN YOU SURVIVE WITHOUT DRUGS AND ALCOHOL FOR A MONTH?...BEST OF LUCK...NOT A DOCTOR, JUST SHARING MY 22 YEARS OF EXPERIENCE TAKING MEDS, IT'S BEEN HARD BUT I'M STILL HERE ENJOYING MY LOVED ONES...HUGS                  OJO

Thank you so much OJO!!!
I typed a lot but it was just gone... brains are not fuctioning quite well either.
thanks dear in short with triumeq i was very good in the first few weeks. i did not use stribid jumped straight from trimeq to genvoya and i felt the lactic adonisis but the result last month was ok. and correct it has the TENOFOVIR   i stopped with recretional drugs and few times parties drink till 4am also drag me down.  i can sleep at my own place but these days i dont want i am single since 1.5 years i mean  i feel vulnarable so i can have really bad dreams nowadays,
triumeq as i understood is from tier1 drug and genvoya is tier 2?
do you think i can still go back to triumeq ?

i will get back to the other things you mentioned in your post... really tired and need to go to bed now

thanks xoxo

[mecch]

My impression reading this globally is that you do not have enough medical supervision.

I don't think you should be looking to this FORUM for answers and advice because a medical specialist should hear EVERYTHING you are experiencing and you should give a list of EVERYTHING you take, party drugs included, and let a doctor figure out what's best for you, and please, follow the instructions, at least for a few years. 

You really shouldn't be off HIV treatment.  I think you need a doctor who is going to set your priorities straight.  After you have a few years of successful treatment and are feeling fit, then maybe you can experiment with some pleasure drugs and see what your limit it.

Best to stick to drugs that you can quality control somewhat.

Anyway, thats my two cents. Not enough doctoring in your life.  Sounds to me you should be seeing someone every month for the near future and maybe a shrink as well.  Don't let your life fall apart, be active and ask the professionals for their advice and guidance.  That is their speciality. Health.  We all need to rely on them.  Especially HIV positive folks.  Let the docs figure it out and give it a try following their treatment plans.

[tinberlake]

My impression reading this globally is that you do not have enough medical supervision.

I don't think you should be looking to this FORUM for answers and advice because a medical specialist should hear EVERYTHING you are experiencing and you should give a list of EVERYTHING you take, party drugs included, and let a doctor figure out what's best for you, and please, follow the instructions, at least for a few years. 

You really shouldn't be off HIV treatment.  I think you need a doctor who is going to set your priorities straight.  After you have a few years of successful treatment and are feeling fit, then maybe you can experiment with some pleasure drugs and see what your limit it.

Best to stick to drugs that you can quality control somewhat.

Anyway, thats my two cents. Not enough doctoring in your life.  Sounds to me you should be seeing someone every month for the near future and maybe a shrink as well.  Don't let your life fall apart, be active and ask the professionals for their advice and guidance.  That is their speciality. Health.  We all need to rely on them.  Especially HIV positive folks.  Let the docs figure it out and give it a try following their treatment plans.

Thanks mate

i saw your comments very often here and you have your opinons

you know the hosptial I am going hosts HIV 500 patients but they only have 2 doctors and 3 nurses.

about the life style, even before apri i felt like i was really invincible coz i felt so fit...but after apri it just deteriateD so fast...

well they did some test about Heptitis c, latic level and others but was good so they thought the way to find out why is to see first if those were really side effects. and i have to be honest judging from how i feel i do think it's from the side effect (i have headaache and heavy chest feeling but they all came after i stop the med)

i was too confident since i really felt nothing when i started Triumeq, simply perfect. and i even said to myself : is this HIV? thsi easy

damn i was wrong! HIV is verocious and the whole healthy and mental thing just worn me down like hell.

last few months was the most difficult time in my whole life.

tomorrow i am going do have an echo really want to know why. and the day after i will see the internist.

[tinberlake]

Have to admit I'm surprised that a treatment interruption was recommended, especially as you actually seemed to be okay using Triumeq, on the whole.

Anyway, should you re-start medication? Absolutely. No-Brainer. HIV isn't something to mess with, and the only way it will do damage to your immune system is by not taking medication. You need to be back on something which will suppress the virus down to UD levels, like, yesterday.

As others have said, the illicit drug use was probably at the root of everything you experienced - certainly whilst you were on Triumeq.

XTC will mess with your dopamine level. HIV meds can sometimes increase anxiety or depression in people pre-disposed to it, which certainly can include XTC come-downs. It doesn't sound like you were doing occasional drugs in a somewhat 'controlled' manner either which would probably be okay. Sounds like you were really getting off your head. The two things are almost certainly linked.

I'm no angel myself in this regard in the past, but I'm always acutely aware that what you get is not regulated and could contain anything as well as the core drug. Interactions with HIV drugs are not out of the question either.

Also, unrelated to the drugs, being HIV positive doesn't preclude you from getting other illnesses which could cause some of the things you had. I know folk who have had mono and it's laid them up for weeks and killed their energy for months - thats just one example. Extended illicit drug use and lack of sleep will make it easier to pick up other nasties which can lay you out.

Now you are re-gaining a degree of normality (possible acute symptoms aside from the awakening of the virus, which should pass), it would be a good idea for you to work with your doctor to get a plan together to get back on meds and keep an eye on things. Try to avoid excessive recreational drug use during this period if you can.

But staying off HIV meds is a bad idea, so you need to get this sorted quickly IMO

Best of luck

Thank you so much for your encouragement, CaveyUK

well they did some checked but the results were ok.. so they thought the best way to find out if those were really side effect, was to stop it for a while. i was advised to stop in aug already but i wanted to give it bit more time then it went worse coz i had then heart pain and chest pain (which is gone now)
so it had idd reached the pointed i icould not take it anymore...i thought of switching back to triumeq, which i did not raise it to the hospital.
they said i was quite a special case since  most people tolerate it well. 

but now without med, except the shittt feeling from reviving from virus, i feel good. (tempararily)

But want to go back on med, withot thinking of passing this to others and worrying about CD4 level constantly. i miss being fit and happy , really.

[tinberlake]

     ojo       HELLO AGAIN...I DON'T WANT YOU TO THINK I'M JUDGING YOU, BUT, NOBODY SAID THAT HAVING HIV WAS EASY, WE HAVE TO DO SOME SACRIFECES, ESPECIALLY THOSE, LIKE YOU, WHO SAID THAT DO DRUGS AND ALCOHOL, AS A MATTER OF FACT, I WAS HAVING DINNER JUST NOW, AND I HAD THREE BEERS, I WAS HAVING SUCH A GREAT TIME THAT I WANTED TO HAVE MORE TO DRINK, BUT. I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS, THAT I LEARNED TO RESPECT MY LUVER, MY MEDS GO THROUGH TO LIVER AS THE BEER, SO, I DO NOT WANT TO ABUSE MY LIVER AND DECIDED TO SAY GOOD BYE (I'VE ALWAYS BEEN A LIGHT WEIGHT DRINKER ANYWAYS), SO, WE, HIV POSITIVE PEOPLE, WE HAVE TO CHOOSE BETWEEN "HAVING FUN" AND RESPECT THE MOST IMPORTANT ORGAN, HIV SPAEAKING....YOU ARE STILL A YOUNG GUY, WE THINK AT THAT AGE, THAT WE ARE INVENCIBLES, BUT THAT'S NOT THE CASE, DID YOU GET HIV FOR BEING "HAPPY"?...WE CAN STILL HAVE FUN BUT ALWAYS CONSIDERING WE ARE DIFFERENT NOW, WE TAKE MEDS WHICH CAN BE HARSH FOR OUR KIDNEYS AND LIVER, SO, WE HAVE TO BE RESPONSIBLES ABOUT WHAT WE PUT IN OUR BODIES...JUST A THOUGHT...I'VE BEEN TAKING MEDS FOR ALMOST 22 YEARS AND I TRY NOT TO MIX THEM WITH ALCOHOL, LET ALONE WITH DRUGS, ALTHOUGH I HAVE DONE IT SOMETIMES BUT WITH A BALANCE.
----
you are absolutely right on that.i define myself as as person with weak limits and boundary. i tend to test the extra bit to give me that bit kicks.
trust me, i leart my lesson, very harshly
when i went to the party. in general i idd found now, the combination of alcohol and medications are very bad combinations, and loved alcohol and clubbing and i like to dance when i was bit under influence ..ja too cocky now fell hard

ABOUT SWITCHIN MEDS, YOU SAID YOU WERE ON TRIUMEQ, DUROTAGRAVIR, STRIBID, ELVITEGRAVIR AND NOW GENVOYA, AGAIN SAME INTEGRASE INHIBIDOR, YOU MAY, I EMPHASY, MAY, DEVELOP RESISTANCE TO THIS CLASS OF MEDS, WHAT YOU SHOULD DO IS IF YOU START A TREATMENT, STOP TAKING OTHER THINGS, UNLESS UNTILL YOU KNOW HOW YOUR BODY RESPONDS TO YOUR TREATMENT, NO DRUGS, NO ALCOHOL, ETC, ETC. AFTER YOU KNOW EVERYTHING IS OK, THEN YOU CAN HAVE FUN, BUT YOU HAVE TO RESPECT YOUR BODY...WE ARE IN THIS SITUATION BECAUSE WE ABUSE OUR BODY, TOO MUCH SEX, TOO MUCH DRUGS, TOO MUCH ALCOHOL, I THINK, SO, IF WE HAVE A SECOND CHANCE TO BETTER OUR LIFES, LET'S DO IT, WE CAN STILL HAVE A GOOD LIFE BUT WE HAVE TO BE RESPONSIBLES, IF WE WANT TO HAVE A LONG LIFE...WHY CAN'T YOU SLEEP IN YOUR OWN PLACE, IF YOU DON'T MIND ME ASKING?...WHY YOU FEEL LIKE ACIDOSIS, HAVE YOU GOTTEN IT?, HAVE YOU BEEN CHECKED FOR IT LATELY?...TENOFOVIR MAY CAUSED ACIDOSIS, AT LEAST IN MY CASE, I CAN'T TAKE TENOFOVIR AND ALL THE NEWS DRUGS HAVE IT ;(

OK, I HOPE YOU FIND OUT WHAT THE PROBLEM IS AND IF YOU RE-START MEDS, DO NOT TAKE DRUGS OR NOTHING ELSE THAT PASSES BY YOUR LIVER, GIVE IT A MONTH, CAN YOU SURVIVE WITHOUT DRUGS AND ALCOHOL FOR A MONTH?...BEST OF LUCK...NOT A DOCTOR, JUST SHARING MY 22 YEARS OF EXPERIENCE TAKING MEDS, IT'S BEEN HARD BUT I'M STILL HERE ENJOYING MY LOVED ONES...HUGS       

I think triumeq should be my pill, it worked and it shall work. I just need to know if i can still carry on with that since i stopped for a while. the result for the anodosis was nagative they checked so they decided to let me stop to find out if that was from the medication (and i feel it was coz now i feel all were gone; )

man, to be honest what i have learnt from last half year: POZ really need to take good care of ourselves. things can really go wrong if we abuse our body in the way as if we did not have the bug.  if i can get a new medication and start healthy again, i will never forget what i experiened. absolutely the worse nightmare, testing the limits of my mentality and body as well...

and you are a wise man, OJO.. also a like bit mellow (in a posive way).. i like it
         

[Tonny2]

   
I think triumeq should be my pill, it worked and it shall work. I just need to know if i can still carry on with that since i stopped for a while. the result for the anodosis was nagative they checked so they decided to let me stop to find out if that was from the medication (and i feel it was coz now i feel all were gone; )

man, to be honest what i have learnt from last half year: POZ really need to take good care of ourselves. things can really go wrong if we abuse our body in the way as if we did not have the bug.  if i can get a new medication and start healthy again, i will never forget what i experiened. absolutely the worse nightmare, testing the limits of my mentality and body as well...

and you are a wise man, OJO.. also a like bit mellow (in a posive way).. i like it
       

             OJO         HELLO AGAIN, I'M TONNY2, OJO IS SUPPOSED TO BE MY EYS AND MY NOSE, MEANING "READ"

I'M NOT A DOCTOR, JUST SHARE MY EXPERIENCES...YOU HAVE, I THINK, TO TALK TO YOUR DOCTOR AND BE HONEST ABOUT WHAT YOU PUT IN YOUR MOUTH, ONLY THAT WAY THE DOCTOR (HIV SPECIALIST) WILL CONSIDER ALL POSSIBLE SIDE EFFECTS AND INTEREACIONS OF WHAT YOU ARE USING, THAT WAY, YOU CAN HAVE THE BEST MEDICAL TREATMENT FOR YOUR OWN BENEFITS. SO, TALK TO YOUR DOCTOR, TELL HIM HOW YOU FEEL ABOUT RE-STARTING TRIUMEQ, BUT, DO YOURSELF A FAVOR, DO NOT MIX YOUR MED WITH ANYTHING ELSE, AT LEAST GIVE IT SOME TIME, MAYBE A MONTH OR TWO, IF YOU DO OK, I GUESS MAYBE YOU CAN PARTY A LITTLE BIT, THEN YOU WILL KNOW IF YOUR "PARTY STUFF" IS THE CAUSE OF YOUR PROBLEMS.

AS I TOLD YOU BEFORE, HAVING HIV IS NOT EASY, WE CAN STILL HAVE A NORMAL LIFE ALTHOUGH, WE HAVE TO BE HONEST WITH OURSELVES AND RECOGNISE THAT MAYBE OUR PAST BEHAVIOR HAS TO DO WITH OUR NEW SITUATION...IF YOU DON'T CHANGE YOUR PAST, YOUR PRESENT AND FUTURE WILL BE YOUR PAST, COMPRENDE?...REMEMBER, BALANCE, YOU WANT TO KEEP LIVING A LONG HAPPY LIFE MAKING SMALL CHANGES OR KEPT DOING THE SAME "PARTYING" YOU USED TO DO, NOW YOU KNOW IT'S NOT THE SAME BEFORE STARTING TREATMENT, RIGHT?

AGAIN, TALK TO YOUR ID DOCTOR, HE IS LIKE YOUR PRIEST, TELL HIM EVERYTHING, SO HE CAN GIVE YOU BETTER HEALTH CARE...LIKE I TOLD YOU BEFORE, I GET LACTIC ACIDOSIS, MY DOC TOLD ME THE SAME, YOU ARE DIFFEENT BECAUSE IT'S RARE, BUT I GOT IT, I REMEMBER THAT IN DAY 10 OF TAKING TENOFOVIR, VIREAD, AFTER 10 MINUTES OR SO OF TAKING MY MEDS, I THRW UP ALL MY MEDS...YOU MENTIONED ABOUT "TIER", 1 OR 3, I SUPPOSED YOU MENTIONED NEWER DRUGS, CORRECT ME IF I'M WRONG, MY POINT IS THAT EVERY MEDICATION DOES THE SUPPRESSION OF THE VIRUS, I TALK TO LOTS OF PEOPLE WHO ARE TAKING ATRIPLA AND THEY ARE DOING GREAT...I'M ALLERGIC TO ABACAVI, SO I CAN'T TAKE TRIMEQ, BUT IF YOU DID FINE WITH IT, TALK TO YOUR DOSTOR AND GIVE IT A TRY...IF YOU ARE STOPPING MEDS UNDER THE SUPERVISION OF A DOCTOR I GUESS YOU WILL BE OK, BUT, AGAIN, IF YOU RE-START THIS MED, STOP YOUR PARTYING AT LEAST FOR A COUPLE OF MONTHS, YOU WILL SAVE MONEY AND MAYBE EVEN YOUR LIFE...THERE IS LIFE AFTER A HIV DX, BUT WE HAVE TO MAKE SOME CHANGES IN OUR PAST CRAZY LIVES, OVERALL, RESPECT OUT BODIES, WHICH ARE TELLING US TO TAKE CARE OF US IN THIS SECOND CHANCE IT IS OFFERING...TRY TO BE A BETTER HUMAN BEING, MAKE BETTER CHOICES IT WILL MAKE YOU FEEL BETTER, THAT'S FOR SURE...WHEN YOU FEEL BETTER, INVITE ME A BEER, I GUESS IT WON'T KILLS US...BEST OF LUCK...HUGS                                                           OJO                                                               

PS. BEAR WITH ME ENGLISH IS MY SECOND LANGUAGE

@TERRYMORE, THANKS FOR THE CORRECTION "INVINCIBLES", I WAS THINKING IN SPANISH, NOTHING TO DO WITH MY BLINDNESS

[tinberlake]

@ Tonny2, thanks. you are right, i am running completely abstinence so i can get back again right on track. no chem, no joints, no alcohol. fruit, run, vegi, gradually again on sports, etc

i went to the hospital. the nurses are very nice. They are really surprised I turned out like this since they knew me as the upbeat person who also came to them with smile and they first thought i might be a "natural surpressor" since my VL without med was firstly on 43.  one of them gave me big hug and said : it will be alright.  the thing is i met with the doctor and he said, it is not known if the bad expereince i had was from the medication or from the other stuff that i took. the result of bood test is all normal, blood sugar, acide level, etc. so he suggested to wait for few months to retart the medication, until my body recovered to the level that i had before i started the treatment end last year.

i can still start triumeq he said. he gave options also to start now and he just asked me if i want to start now or later. i said i will think a bout it and if i want to start i will call the hospital.
he said i could also wait for a month coz the new edition for eviplera will come in so i can try that next month..i think he meant Odefsey

i did my own research but it's like genvoya also contains  tenofovir alafenamide.
anyways, i think i will wait for a bit. i just have an impression only thing they do is to switch but they can't say what ingredient may lead to what.. that is bit disappointing. though the nurses are really super nice people.

also now with the new 1 pill/day regime, I sense that the doctor kinda even bother to check options with diffierent combinations.

Anways, i will keep you guys posted. now it's the 3rd week i stopped my medication and it feels not pleasant trust me. (quite rough last week headache and feel like having cought a flu except no fever)

[CaveyUK]

So your doctor offered to start you on medication again right away and you have declined and are choosing to wait, for some reason.

This is not a smart thing to do.

A single low VL count off meds does not mean you are a 'natural suppressor'. Even if you were - and very few people actually are - there are other health issues that are more prevalent amongst those people. Getting on effective HIV treatment is the number one priority.

I think you are hunting for reasons to be frightened of the drugs. Yes, if the meds do cause side effects then they can be switched. Much of the time, people attribute any side effects to the HIV meds when it may be something unrelated (sometimes, even psychological), but the one thing that pretty much everyone agree's on is that if you are HIV positive, then being on ARV treatment is important.

You will have to go back on the meds at some point, so whats the point of waiting? You want to wait a month or two and then start a new med regimen just before the holiday season? I'd prefer to get sorted before that. And what will realistically change between now and then? If there is a fixed plan to put you on a new drug that is available in a months time then perhaps that is ok, but it doesn't sound like there is a firm 'plan' for this based on what you say.

My guess is that in a month or two you will find another reason not to start again, and before too long your anxiety about HIV meds will be so big you will struggle to bring yourself to start again - at least until you start having serious complications due to the virus, and a seriously impaired immune system.

I think you know what to do. If you do have problems then switch until you find a regimen that works for you. It really isn't that complicated

[tinberlake]

haha thanks CaveyUK, i just swallowed a triumeq and I will request a new receipt on Monday.

yes it will happen at some point and lets just let it happen now. i did not wait i just did not give the doctor the answer straight away, espcially he recommended to wait for sometime while i want to start earlier. and i swear 2 you the comeback of the virus doesnt feel good...
if I want to keep the virus surpressed?? yes yes yes
my virus right before the treatment was 88000 so i am certainly not a natural surpressor...that was the false idea before i started party drug use and that was in 2014.

well i really hope it will work out this time... till end  this  year, no joint no drugs no alcohol...keeping you guys updated.