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Multiple Side-effects

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Quint1976:
Hi,

I’m new here so if i’m in the wrong section please move or delete it.

Been hiv positive since May 2011 and have had several different meds to treat my HIV but they all gave me multiple and severe side-effects.
I am without treatment because of this and i am looking for people who have the same experiences with multi side-effects that do not go away after a couple of weeks/months.
Feels like i am in a minority in this but maybe there are other people out there who are willing to share and maybe even have pointers  ;)

Oh yeah i’m from The Netherlands by the way and am 46 years old.

Jim Allen:
Hiya,

Welcome to the forum.

Sorry to hear you have been having presumably unmanageable side effects with regard to treatments so far. Sometimes it did take me 4-5 months to settle into a treatment or adapt to it; although I never could adjust to TDF and gave it up after two years, it did save my life though.

What treatment combinations have you tried so far, for how long and what side effects were you experiencing with those treatments?

Jim.

Quint1976:
Hey Jim

Thanks and sorry for putting my thread in the wrong topic header.

I’m what doctors call a multi-responder, which means i react to almost all medication in one way or another.
This goes for hiv medication as well….

First of all i’m HLA-B57 positive so there goes everything to do with Abacavir.
Second i use a type of medication that interacts with Rilpivirine (aka complera) by breaking it down way too fast so that i can’t use either.

I’ve first tried the Viramune/Truvada combo for over 6 months when i first got diagnosed. It gave me dizziness, diarrhea, tiredness, bad skin rashes, headaches and more but most of all a lot of pain in my stomach which never stopped day in day out for those 6 months.  I was forced to stop after concerns for my health by my doctor.

Then came Stribild which gave me most of the above plus muscle pains, joint pains and it heavily impacted my mental health. This i used for around 7 months before i switched to Genvoya ,which only is different from Stribild in TAF, due to concerns for my kidneys. Funny enough it made the problems only worse so after 4 months of Genvoya i stopped.
Then came Biktarvy in October of 2018 which i started and have me headaches, dizzyness, joint pains, muscle pains, involuntary movements, sleeping disorders, nausea, weight gain (gained 10 kilo’s in like 3 months) and it made my depression worse to the point i had to be hospitalized.
All in all i used Biktarvy for a year before having to decide to stop using it.
Then i went for three years without meds and my cd4 count and viral load held steady but it was suggested i try Delstrigo by my doctor.
After only one day i got a 40+ degree fever and started to get upper lung and throat infections as well….they had to hospitalize me again and concluded that i had an allergic reaction to the Delstrigo.
Had to stop that immediately and stayed in the hospital for 5 more days to recover from that !

They looked into one final option which was Dovato pill but ultimately decided against it because i apparently have some resistance which came out of the test they did when i got diagnosed with HIV in 2011. The doctor feared it could result in resistance for Dolutegravir since Dovato only has two active components.
After this they basically said there were no viable options for me at the moment…..

So that’s where i am at in this point in time…..living with HIV without treatment due to the many side-effects that do not go away.
I feel very much alone in this, many fellow hiv patients i know don’t understand me because they think i want to die but the burden that goes with taking the meds make the quality of life so low it’s like choosing between two evils  :'(
Thats why i wanted to place my post to search for people who have the same experiences…….

Matths:
Hi there, thank you for sharing your story. I only wanted to make 2 comments. One, do you know for which components/medicines of Dovato you may be resistant to? I am asking because if it is Lamivudine, there is published literature out there that shows that even if you are “resistant” to lamivudine, the virus remains compromised in its ability to replicate and continues to be susceptible to ART including lamivudine. And, especially in combination with Dolutegravir the combo of the 2 medicines, Dolutegravir + lamivudine (which is Dovato as you know), this combo is effective. I saw another paper that shows that a virus that is resistant to lamivudine is specifically susceptible to treatment with TAF (but I believe you had that medicine in the past and had side effects).

The other comment is if you had tried protease inhibitors? They have a completely different mechanism of action but as far as I know this class is only available in combination with drugs that you may have had negative experience with in the past. But maybe worthwhile to discuss with you doctor.

Hope you find a combo that works for you, best Matt

Quint1976:
Hi Matt,

Thanks for your reply, i appreciate sharing your thoughts with me.

I believe i have a resistance to NRTI's (nucleoside reverse-transcriptase inhibitors), which i "inherited" from the person who have me HIV.
This does include the Lamivudine component which is in Dovato but also TDF and Emtricitabine which i used in several other combo-pills and it worked fine. Most of the time when other component(s) are introduced as well it does bring replication to a halt. The reasoning my doctor has for not giving me Dovato is that she is questioning if two components can be enough to keep my HIV in check without developing resistance to both components including Dolutegravir.
She did not say to me that she would never consider it but she would have to talk to a virologist specialized in drug resistance (they only have like one such a person in the whole of Holland hahaha) if it is worth the risk.
I am thinking less components may lead to less side-effects or at least manageable ones...or maybe thats just wishful thinking on my side :)
Anyway she will not be talking to that virologist for now since i am just not ready to try and start another regimen......that Delstrigo experience made me a little scared to be honest.  :-[

As for your other question i believe that i never had Protease inhibitors, they are mostly older meds right like Prezista ?

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