Side effects from Isentress (+truvada) - side story of my life

[sillyrabbit]

Hi guys,

This is my first post in this forum. I tested POZ last year in August and I felt that my world came apart. (And it did ) )
I started treatment during acute infection with ABC + lamivudine and DRY....after less than three months I had daily heart palpitations at bedtime and during rest periods... I had my doctors change the ABC + lamivudine and replace it with truvada.

The palpitations slowly disappeared but the DTG had me  very dizzy every day...one day I slept for 13 hours... I later came to find out that the Dutch made a study and the initial combination they gave me was terrible affecting CNS ...

I went back to the doctors (btw I live in eastern Europe so you can imagine the friendliness of them) and replaced Dolutegavir with Isentress.

I had absolutely no side effects for the first week and a half but then nausea and tiredness came through now. I have been taking proton pump inhibitors to treat my acquired GERD and H2 blockers...cause antacids are not recommended with isentress/raltegavir.

My question is... is it possible for the side effects to appear after a while since you start a new regimen (change one active ingredient) and if there are any others on this regimen how long does it take for these side effects to wear off? (If ever...) for me there is no other option to change meds so I dearly hope they do disappear...

Thank you guys! Bless u!

[klauss]

Hey Sillyrabbit,

                Sorry to hear that your have problems with your treatment,I am also newly diagnosed like you,started treatment in January with Truvada + Tivicay(DTG),three months has past with any side effects....

You must give a little bit of time to your body to adjust with your meds ,I was also very scared at first because i'm working and I wasn't sure if I could face the side effect durring the day.I take my meds at 8 PM with food ,have you tried to have the with food even if  there is no requirement to take them with food,or you can try to have a yogurt after you take them....

Hope this advise ,will help you ...take care:)

I also live in eastern Europe

[Jim Allen]

Hi

Sorry to hear about the digestive disorder.

Look firstly yeah give your body time to adjust and if you have side effects (You should not be expecting any long lasting) than its either a case of manage them or switch. 

Since the side effects came back after switching I would urge to check again for any underlining conditions or counter effects with the other medications you are taking.

As for the Dutch well the majority in the study were okay with it, i think it was a limited clinical data setting that found 62 of the 387 patients (16%) who had started DTG therapy halted DTG and from that 31% said CNS so not a huge group but interesting to know.

Not sure as you did not provide a link so I guess that is the study you mean ? Anyhow you will get used to that we ask members here for links. I think if i know the studies you mean later bigger studies have reported about 10.7%

Anyhow try not to read too much into side effects from others, not much point really :-) Instead try to manage any problems you encounter and the root causes if possible and find solutions.

Hope it all settles for you soon and that you feel better.

Jim

http://i-base.info/htb/30853

[sillyrabbit]

Hi Klaus,

Thanks for your input -- I am working as well and these side effects I had the past two quarters have hit me really hard. Hopefully, you are right and I will give Isentress a bit more time in order for the sides to wear off! Good to hear I am not the only one in Eastern Europe on this forum...you know how the doctors are here and how difficult dealing wiht them is...

Hi Jim,

Thank you for replying to me - the past few months I have been going to several forum threads and noted that you are putting your shoulder on to support so many poeple in emotional or physicall distress. Congratulations! I hope I arrive at that level of physical comfort that would allow me to share my story and advices to the ones in need.

Going back to the action points, here is the article that I was qouting, and it is exactly the same one that you have been talking about.
http://www.aidsmap.com/Doctors-in-Netherlands-observe-higher-than-expected-dolutegravir-treatment-discontinuation-rate/page/3089707/ (Klaus, I hope you dont end up in the same predicament) I had exactly the same killer combo at first with ABC + DTG that really brought me down.

I stongly believe that the side effects I have are due to the gastric medicines I ma taking (omeprazole + famotidine) and I stopped taking them a few days ago and my brain is much more relaxed now. I don't feel nauseos, dizzy or fatigued... the heartburn returned... but I will try to cope with it. I forgot to mention that due to the fear, I stuffed myself with around 15 pills a day (a large spectrum from ARVs , anti nausea, anti acids, to vitamins ) I will put a hold on these as they were  probably too much for myliver to handle.

One more thing that I havent asked you about... after 6 months of ABC,LVD+DTG and TDF,emtvira+DTG... I got my lab results and i had 56 viral load ...so way above undectebale...should I worry about this? My CD4 are at 560. Is this transmissable?

Thank you for your support!

[Jim Allen]

Hi

I stongly believe that the side effects I have are due to the gastric medicines I ma taking (omeprazole + famotidine) and I stopped taking them a few days ago and my brain is much more relaxed now. I don't feel nauseos, dizzy or fatigued... the heartburn returned... but I will try to cope with it. I forgot to mention that due to the fear, I stuffed myself with around 15 pills a day (a large spectrum from ARVs , anti nausea, anti acids, to vitamins ) I will put a hold on these as they were  probably too much for myliver to handle.

Okay wow, well cutting out what you don't need would be an idea to reduce the pill burden and also have some insights to the root cause. The vitamins is something i would just drop for the moment until you have a balance. But I would not recommend anyone dropping a medication to test, before speaking to a doc but you have and it seems to indicate the gastric meds are a possible cause or interaction.

Look for myself i check the interaction page on drugs.com . Now what i would suggest is that next time you see the doctor to inform them of your findings, perhaps a change in gastric meds is possible, who knows. Hopefully something or some balance can be arranged 

One more thing that I havent asked you about... after 6 months of ABC,LVD+DTG and TDF,emtvira+DTG... I got my lab results and i had 56 viral load ...so way above undectebale...should I worry about this? My CD4 are at 560. Is this transmissable

As for the 56 VL, you just switched meds and its just a blip, clinically its not be UD however as for transmission most of the studies used under 200 as UD threshold.
I presume you ask about transmission in the context of sex, well no need to panic  Its a tiny blip of 56 VL and just keep practicing "safer" sex as normal.

Have a look here I think this is a very informative and reassuring statement: https://www.preventionaccess.org/consensus
 
But the truth is however I can not guarantee TaSP (Treatment as Prevention) and being UD is no risk, and none of the other moderators here will either, see TaSP is a great thing and has been studied a number of times now and is very reassuring to both people living with HIV and their HIV negative partners, and some people will go condom-less based on that reassurance accepting the slight risk.

TaSP (Treatment as prevention), is not something new, and has been shown to work a few times over and the short version is that if he has confirmed and sustained (>6 months) undetectable viral load than the risks of transmission greatly reduces to negligible.  That is of course if you remain on treatment, remain adherent to treatment and remain undetectable. (UD) 

From a general safer sex point of view and something you will see back in messaging we give in the "Am I infected section" nobody can guarantee TaSP as it requires the individual to remain on the meds and monitored etc and not to experience treatment failure and to remain UD.  I could personally never in good faith for example tell a HIV negative and sexually active person not to reduce risks where possible and to protect themselves additionally next to testing regularly.

"Safer sex" as there is no "safe sex" is simple a combination of tools used to reduce risks, TaSP is one thing or part of that but we tell people to use condoms and HIV negative people to also consider PrEP as additional layer of protection against HIV. Condoms also give some protection against other STIs

It all depends on what level of risk and trust you and your partner are comfortable with and willing to accept. This widely differs from person to person and from relationship to relationship.

Jim

[harleymc]

Your viral load is great! 56 is really very good. Undetectable is lovely but a significant proportion of people on ART never get there.
I have no idea what your initial counts were before treatment but I'm betting you have cleared 99.9% or 99.8%  of the virus in 6 months that's awesome. If you continue at this rate You'll be hitting undetectable within a year of starting.
It appears from a meta study of several trials that transmission is rare at VL <1000.
With your cd4 counts as high as they are you will never have to worry about HIV affecting your health if you can find a way to be comfortable with your pills. So forget about HIV don't let it ruin your sleep or make you anxious.

You've constructed a mental framework about yourself of bad things happen to me and they are the worst and there'll never be an end to them.

That;s clearly not true, you have access to state of the art medications. You've had several distinct health issues this year and managed to resolve them one after the other.

You can choose to keep thinking like that or you can take some action and take charge of your thought processes.
There's lots of good resources on line for treating depression and anxiety or you can see a psychologist.

PS you have 4 times as many CD4 cells as i do.

[sillyrabbit]

Hi,

Thank you Jim and Harley for replying to my thread. It's been both reassuring and comforting to go through your comments.

In order to have the full picture, I would like to tell you that I got diagnosed last August, during Acute Infection when my viral load was of around 2.5 mil units...CD4 760.. I was so eager to start treatment back then, and I believe I did good to follow doctor's recommendations. (still a bit concerned because my CD4 fell from 760 to 560...even with ARV pills)

I must say that after six months on the pills, I went from being extremely enthusiastic about taking them, to depressed due to the pills side effects (espeically heart palpitations of ABC...horrible!), ending up in being a 'secret' side of my daily routine. I seem to enjoy this double life ...of 'hiding' twice a day for taking the pills..for now! On a more joyful note, I would like to tell you that once i was with friends out and due to the timing of the pills I had to distract their attention saying that was a popular TV star on the other side of the side walk... so that I have time to quickly take them... that felt both funny and sad... /// about this...I would have a question...considering that I use to take the main ARVS TRuvada + Isentress once as soon as I wake up... is it ok to keep this same schedule during the weekend...when of course I tend to wake up later? (1-2 hours later) and then come back to initial schedule during weekdays?

Also, the 56 VL sample was taken before changing the meds (the same being changed due to side effects I had and not to virologic failure)...i hope the new ones (replacing DTG with RAL (twice a day) will take me to the paradise ....UD

Jim, I would also like to thank you for sharing the UD confirmation & article...the issues in Eastern Europe are as follows: people don't get tested or they do but very rarely, they usually practice unprotected sex based upon verbal confirmation when meeting the partner and the general acceptance is that if you have HIV...you are on deathrow. Taking all this into consideration, it is very difficult for me to disclose this status, considering the conservative mentality, but also to impose safe sex to a new partner without disclosing - I have to tell you that 1 in 2 guys would become intrigued if you insist in using the condom.... horrible mentality!
The good side (at least for others than me who are negative) is that we dont have dark rooms, saunas, big pride events which promote casual sex with numerous partners.

One more quick question aboout this rather new condition that I/we have ... is it possible to really make 100% peace with your medicines...to take them as you go and enjoy..... a walk at the seaside...driving for 8 hours to the countryside or a pizza or a coke? does life come to normal eventually?

Thank you very much!

AJ

[Wade]

Hi srabbit, I took Isentress and Truvada for years and took them both at bed time. Neither have food requirements so that makes things easier.
To be honest if I had any side affects I slept through them. I would discuss anything like heart palpitations with your doctor, it may have nothing to do with your meds

Best, Wade

[Jim Allen]

I would also like to thank you for sharing the UD confirmation & article...the issues in Eastern Europe are as follows: people don't get tested or they do but very rarely, they usually practice unprotected sex based upon verbal confirmation when meeting the partner and the general acceptance is that if you have HIV...you are on deathrow.

I wish I could say that thinking was limited to one location or area as you mentioned Eastern Europe but its not.  Anyhow look after yourself in that respect.

One more quick question aboout this rather new condition that I/we have ... is it possible to really make 100% peace with your medicines...to take them as you go and enjoy..... a walk at the seaside...driving for 8 hours to the countryside or a pizza or a coke? does life come to normal eventually?

Sure its a pill or two a day, and unless I am answering a question in the "Am I" section I don't even think about it and even than I tend to forget I am living with HIV. 

Things settle in and life goes on as normal.

Jim

[sillyrabbit]

Hi everyone,

I am taking Truvada and Isentress, every morning around 1-2 hours after I wake up. I seem to get very dizzy and tired 2 hours after taking the pills... feeling that last throughout the afternoon, getting better in the evening. Is anyone on this combo having similar side effects? (I have been on this regimen for a few weeks)

Also, considering the timing of taking the pills - during the weekend, I tend to wake up 1-2 hours later and of course, delay taking the pills a few hours, coming back to the same hour during the weekdays. should this be a problem?

Thank you,

[Jim Allen]

Best time would widely differ per person and routine of course.

Perhaps taking at least the "Truvada" with food and if possible a few hours before bed so during the weeks ahead as your body adjusts you sleep over any dizziness. (If the meds are causing it, you should check with GP for other concerns)

If however after a few months you are still not feeling the love on Truvada than go back to the doc and see if something can be changed.

Jim

[mecch]

 sillyrabbit I took that combo for 3 years.  It was my favourite so far.

Can you tell me if your doctor insisted 1 pill isentress in the morning and the other in the evening?

The 2x a day dosing was the recommended way. My doctor told me to take it like that but after a year he said he personally felt it was ok to take all 3 pills at one time but he wouldnt tell me officially because it was not "official".  He also said taking it all together would prevent me from missing half doses of isentress.  Sometimes I DID end up with a pill or two of Isentress at the end of the month.  Bad boy.

Anyway, I was years undetectable so I guess that may have been a factor in his unofficial blasé attitude if I took it all at once.

I just decided to take it all together.  Mostly in the evening. But sometimes at other times of the day.

My work day is so busy and distracting, I can work through anything, and I have never noticed any side effects form any combo - except years ago my first 1/2 year on efavirenz - the molecule in Truvada.

I hope you find a working solution because its a nice combo - well at least it was for me.

Remember any molecule switch may take a while to get used to.

[sillyrabbit]

Hi guys,

Thank you both for replying!

Jim,
My doctors would kill me if I were to ask for another treatment change....anyway let's see how this goes, as you said.

Mecch,
we don't have the one pill option of Isentress yet ...and adding 3 pills instead of one would make me require more Isentress monthyl dose.
Still, I dont have any problem of forgetting (as I am treatment naive still and very concerned about them) but the few side effects that I was mentioning below... anyway I am just a few weeks on Isentress and hope they will wear off with time. Are you really at 100% power on this combo? I mean I know that everyone reacts differently to each molecule, but I would like to know if there is a light to this tunnel. I used to have strong nausea second week but now its better..

thank you!

[Wade]

I merged both your threads as they were pretty much the same topic.

Best, Wade

[sillyrabbit]

Hi everyone.,

Has anyone tried to switch the time for taking the pills from morning to the evening? How do you do it? Specialists recommend gradual change...but I would like to do it faster. I practically need to move just the truvada side from morning to the evening as isentress is twice a day anyway...
 I wonder if anyone tried to this quick change and if there are any sides associated with it..


Thank you!!!

[Ptrk3]

Since today's meds are so forgiving and have much longer half-lives as the meds a generation ago, I would think that you could just do it during one day; i.e. if you take your meds at 8 a.m Monday, take the next dosage at 8 p.m. Tuesday and at 8 p.m. thereafter.  After all, people do miss dosages once in while (and you're not doing that) and still remain "undetectable."

Of course, you may wish to check with your healthcare provider.

[CaveyUK]

If you are switching from morning to evening, just do it. Having a gap of 12hrs one day isn't going to make any difference to your numbers.

[sillyrabbit]

Thank you!!  I will do that and keep you posted.  Still very tired from the Isentress during the day...it seems that this is the culprit....

[Ptrk3]

You're welcome.

I'm sure you will be fine.

[sillyrabbit]

Hi!
I did the change and I had no different side effects... so at least this is good.

however, I feel a little light headed / dizzy almost all day long...tired always feeling like I need naps even if I sleep full 8 hours per night... is this normal?
I just started Isentress (RAL) a few weeks ago...

i really appreciate your opinion...i dont have anyone else to speak to

[Jim Allen]

Hi

I am merging your threads as its on the same topic and easier for other people to help you if its in one thread.

Are you taking the medication with or without food? I know both are allowed but would recommend if you are doing it empty to switch to taking with food.

Overall my two cents are cut out anything you taking that is not prescribed (so over the counter, vitamins anything like that) and if you keep having the feeling you are tired than report it back to the doctor.

Realistically that is all you can do, and than you and the doctors should be checking for any other underling conditions that can be causing this. You have reported tiredness & sleep concerns under both or all 3 ? combinations so far.

It does take a few weeks and sometimes a good few weeks for someone to settle into a routine and i hope this all becomes an easier thing for you in say 2-3 months time.

Take it easy and keep us posted.

Jim

[sillyrabbit]

Hi! I feel very weak especially when the time comes when I need to take the pills...very low energy ... and an over all I'll feeling... ... today I did not take the Isentress during the day... I will take double dose along with truvada in the evening and keep this schedule.... I really hope it is going to get better... I can't stand this anymore  ..

[sillyrabbit]

Sleep concerns I don't have...just tiredness... muscle aches.. dizziness.. loss of appetite . I believe it's due to Isentress... truvada seems to have little to no side effects to me... ugh

[Jim Allen]

Look don't double doze. * You missed a doze the answer is not to double up next time its due. If its near the time you have to take you next doze than skip this one and try not to make it a habit going forward.

Talk to your doctor about the continue weakness and check for anything underlining.

I feel very weak especially when the time comes when I need to take the pills.

If its worse when the time come to take the pills ? than to me it sounds like you have perhaps an issue and perhaps the thought or metal aspect of taking the pills is making it worse.  This is also something you doctor should be working with you on.

Jim

*
https://www.drugs.com/isentress.html

[Ptrk3]

Jim is correct:  do not double dose.  That is likely considerably more counterproductive than delaying a dose by 12 hours or missing a day. 

Truly, if you are unsure how to proceed, consult with your doctor.

[mecch]

I think OP meant he will take his 2 pills of Isentress together, rather than at different times of the day.   Not the "double dose" you guys are worried about.

[sillyrabbit]

Correct... I would not have double dosed on the Truvada... I take it once a day and I keep the schedule - it was just the Isentress that I did not take during the day and I took two pills now... anyway I informed my doctor about the tiredness, dizzyness, feeling sick all the time and the fact that I seem to have muscle aches....

I hope they wont reject me.... as they warned me last time.... is it so hard for them to understand that people are not feeling well and not making these things up? I wish I was so lucky as many guys here... that have the first regimen...the best regimen with almost no side effects... but this is my luck !....always!

Doctor said she would speak with the head of the ward and let me know tomorrow how to proceed...

just want to let anyone know that no matter how bad i felt i took my medicines without skipping doses (only changing the part of the day, or chosing to take isentress once per day 2 pills)

thank you for all your support! i feel that I am not alone when I read your messsages!

[Jim Allen]

I hope they wont reject me.... as they warned me last time.... is it so hard for them to understand that people are not feeling well and not making these things up? I wish I was so lucky as many guys here... that have the first regimen...the best regimen with almost no side effects... but this is my luck !....always!

Doctor said she would speak with the head of the ward and let me know tomorrow how to proceed...

Well good that you reported it and hopefully you can see some progress soon. I am sure that they are just concerned and wanted to make sure you are not just jumping treatments before they have a chance to work and your body has had a chance to adjust to them. See it a little from their point of view as I am sure they get people like that who don't give initial treatment time or read too much into side effects and they probably just wanted to make sure you to give it a try.

On a different note, have you spoken to anyone face to face BTW like a support group or a hiv counselor?

Jim

[sillyrabbit]

thanks Jim! I have asked about a support group..and they said that considering that HIV is now more a chronicle disease and not deadly as in the 90s (Eastern europe) there are only support groups for pregnant ladies.... anyway...when I asked that the doctor bursted in laughter... like what a crazy thing to ask?!?

i know that I get informed a lot and read through the side effects.... but the only thing that I cannot handle (and I had a bit from all.... from nausea&vomit to headaches...) is the dizzyness...the fact that I cannot concentrate and that my body feels powerless... I live in a communist block and need to go up 4 floors without an elevator .. it is very difficult now....never had this before! I want to say that if they say that it is ok to feel like this in the first month....maybe a few weeks more...i can try to cope with it.... but if it is undefinite and this doesnt go away.... i would definitely need a change...

also... I wanted to ask you guys... if you change a regimen with another one (without skipping doses or making a break in between) is it mandatory to get resistance to the previous regimen? (meaning you could never go back to the meds that you discontinued)

thanks!

[Ptrk3]

No, it is my understanding that you do not develop resistance to the retroviral regimen that you left presuming, as in your case, the development of resistance was not the reason you left the retroviral regimen.

[Jim Allen]

thanks Jim! I have asked about a support group..and they said that considering that HIV is now more a chronicle disease and not deadly as in the 90s (Eastern europe) there are only support groups for pregnant ladies.... anyway...when I asked that the doctor bursted in laughter... like what a crazy thing to ask?!?

Than its about time to be the first member of you own, find others and do a coffee morning  Alternatively start looking if there is a ASO in your nation, i know the hospital from what you said does not have a support group but perhaps there are other non-state related organizations. 

i know that I get informed a lot and read through the side effects.... but the only thing that I cannot handle (and I had a bit from all.... from nausea&vomit to headaches...) is the dizzyness...the fact that I cannot concentrate and that my body feels powerless... I live in a communist block and need to go up 4 floors without an elevator .. it is very difficult now....never had this before! I want to say that if they say that it is ok to feel like this in the first month....maybe a few weeks more...i can try to cope with it.... but if it is undefinite and this doesnt go away.... i would definitely need a change...

Its more the over reading I am hinting at and yeah sometime its does take a few months to settle in, most people on newer drugs have no problems except a few adjustment days but some do take a few months particularly if they have been ill to start with.

Don't forget to rule out other factors such as drug interactions and underling causes when working with your doctor.

Jim

https://www.poz.com/basics/hiv-basics/hiv-drug-resistance
https://www.poz.com/basics/hiv-basics/switching-hiv-treatment

[klauss]

Hey sillyrabbit,

I'm also alone from the same country if you want to talk more send a private message and we will not be alone anymore ....take care

[sillyrabbit]

Hi guys,

I have been going on several regimens since I tested poz back in August 2016 and it seems that my body doesn't want to get used to them. I am now back to Truvada and Tivicay and I experience loss of appetite, chest pain and every day low energy.
Is anyone else having similar experiences? How long does it usually take until your body gets accustomed to a regimen? I have been switching back and forth from Tivicay to Isentress and I don't know how much to 'hang on' until you feel 100% ok. (does this even happen?)

Thank you for being here!

[Jim Allen]

Some no issues, most people adjust in a few days, others a few months.

So you have switched again? When and how long are you on Truvada/Tivicay

Look chest pains can have many causes some serious. It could also be mental such as anxiety or stress. Who knows.

Whatever the case maybe chest pains should not be ignored. Go see your primary/gp or whatever they call a front line doctor to check on you and also to rule out or treat  the chest pain.

Hope you feel better soon.

Jim

[sillyrabbit]

I have been on Tivicay/Truvada from November 2016 till March 2017...and then for one month I switched Tivicay with Isentress (bad choice! my stomach never felt worse...very very tired) and now I returned to Tivicay and Truvada.
I havent missed any doses all this time and I hope that considering the change is from the same meds class DTG/Tivicay-RAL and back, will not create any mutation :I

I have made a heart ecography and that seems to be ok... chest pain seems to gets worse when I eat or drink.... I am currently on business trip... so I cant do much about it now... maybe I should go request a chest x-ray upon  my return..

[sillyrabbit]

~~~update
I just spoke with my doctor and said to keep on staying on Truvada/Isentress not to switch back, which I did for one day by myself... i hope I will get rid of these side effects once and for all.... really upset....

[Jim Allen]

Hi Sillyrabbit

Your doctor is correct really do need to stop changing meds and switching. This should only be done with doctors guidance. You can't without risk change treatment by your own accord. 

Are you taking any other drugs at the moment OTC or otherwise and have you professionally checked for interactions between all of them?

Also you should be giving a combo time and rule out any underling physical or mental health conditions with your doc.

I am really sorry to hear you are feeling bad at the moment and hope you feel better soon.

Jim

[sillyrabbit]

Hi Jim and thanks for your update. Back on Isentress and truvada and extreme fatigue from early morning to late evening still here...anyone experiencing this fatigue and how long shall I cope with it until it disappears? I cannot work / drive/ concentrate... user input is highly appreciated.... please!

[mecch]

I am sorry you are so debilitated from the HIV treatment.

I have already posted my experience with your combo - it was unnoticeable, no side effects. Most have it like that. I am sorry no combo is working for you.

You will have to work closely with a doctor to find a solution.

You said you can't work. How is that experienced by you now, then? You are unemployed?  Did you leave a job over this? How are you managing financially?

Is it possible you are completely burned out emotionally and psychologically? Have you had any psychological or neurological examinations and had any experts give you their expertise?