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Author Topic: Multiple Side-effects  (Read 1720 times)

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Offline Quint1976

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Multiple Side-effects
« on: August 20, 2022, 04:02:23 pm »
Hi,

Iím new here so if iím 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 iím from The Netherlands by the way and am 46 years old.
Open Your Mind To Possibilities

Offline Jim Allen

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Re: Multiple Side-effects
« Reply #1 on: August 20, 2022, 04:07:25 pm »
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.

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Offline Quint1976

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Re: Multiple Side-effects
« Reply #2 on: August 20, 2022, 05:29:22 pm »
Hey Jim

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

Iím 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 wellÖ.

First of all iím 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 canít use either.

Iíve 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 kiloís 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 wellÖ.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 momentÖ..

So thatís where i am at in this point in timeÖ..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 donít 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 itís like choosing between two evils  :'(
Thats why i wanted to place my post to search for people who have the same experiencesÖÖ.
Open Your Mind To Possibilities

Offline Matths

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Re: Multiple Side-effects
« Reply #3 on: August 21, 2022, 08:05:23 am »
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 ďresistantĒ 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

Offline Quint1976

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Re: Multiple Side-effects
« Reply #4 on: August 22, 2022, 04:15:01 am »
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 ?
« Last Edit: August 22, 2022, 04:19:35 am by Quint1976 »
Open Your Mind To Possibilities

Offline Matths

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Re: Multiple Side-effects
« Reply #5 on: August 22, 2022, 07:35:32 am »
Hi again,

Given that you currently do not take any HIV treatment, they can test resistance with todayís tools which are much more precise than back when your ďresistanceĒ pattern was first established. I would encourage you to initiate that step if it hasnít been done so yet. I believe that Dovato (which I am taking for full disclosure) can only been prescribed if neither of the 2 components is affected by resistance (but please double-check with your doctor).

You are correct, Prezista falls into the group of protease inhibitors. But there are up to 10 protease inhibitors approved to date, the more recent ones being better studied in trials and more experience. So, this class could be an option for you to consider.

Final comment: I understand why you donít take any treatment currently. However, if this was me, I would not sit and wait because untreated HIV has the potential to harm you and others potentially, and with todayís treatment options there is a very high possibility that also you will find a combo that works for you to keep you undetectable. Best of luck, Matt

Offline Quint1976

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Re: Multiple Side-effects
« Reply #6 on: August 22, 2022, 09:07:10 am »
Hi Matt,

Thanks for replying to my post.

hmmm i will look into that Protease inhibitor story and see what i can do with that.

Second i was with my doctor last Wednesday for a check-up and asked the very same thing you advised me by checking resistance again.
She told me after i asked that it was not possible to do so since resistance testing, after testing when diagnosed, would be pointless since i do not use meds at the moment so they could not see what kind of specific hiv tribe would be resistant to the meds. I told her that was the first time i heard of it that you need to be on meds in order for them to test what kind of meds i was resistant to.
I was under the impression that you could always test it with or without the meds since in a lab setting they would use various hiv med components to test resistance but apparently not ??
Anyway she went on to say labs were okay at this time so no hurry to start meds....

Regarding your last comment, point taken and i totally agree....sit and do nothing will do me more harm than taking action.
I just have to figure out what steps i could take next.....
Open Your Mind To Possibilities

Offline Jim Allen

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Re: Multiple Side-effects
« Reply #7 on: August 22, 2022, 09:11:42 am »
Viramune/Truvada, Stribild, Genvoya, Biktarvy

 ???

It's a bit odd that they keep giving you combinations containing mainly the same drugs TAF/TDF and yet expect a different outcome. 

However, there are still plenty of other combinations possible, and I hope you find something that suits you better sooner rather than later.

Quote
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.

DTG is not everyone's cup of tea, works fine for me, though. If the concern for developing resistance is that high prehaps, your doctor might consider twice daily DTG (so double doze of DTG).

https://www.natap.org/2013/IAS/IAS_21.htm
https://www.aidsmap.com/news/oct-2011/dolutegravir-potent-twice-daily-works-better-integrase-resistant
https://journals.sagepub.com/doi/full/10.3851/IMP3275

Anyhow, best of luck.
« Last Edit: August 22, 2022, 09:18:35 am by Jim Allen »
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Offline Quint1976

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Re: Multiple Side-effects
« Reply #8 on: August 22, 2022, 10:37:09 am »
Hi Jim,

Thanks for your reply.

Yeah i know, i never understood it either....
I will look into that DTG option and check out those links you provided.

Thanks again for helping me with this info Jim, much appreciated !
Open Your Mind To Possibilities

Offline Matths

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Re: Multiple Side-effects
« Reply #9 on: August 22, 2022, 10:41:24 am »
Hi again,

With all due respect to your doctor, but the comment regarding resistance testing is flat out wrong. If my doctor said something that wrong to me, I would immediately switch (and I am big against doctor shopping!!). However, here your doctor got one basic of HIV care fundamentally wrong!!

I also agree with Jim on the prescriptions for the same class of drugs you are believed to be resistant to. If you had in the past a good response defined by lowering your virus load, and you completely stopped your medication, there is little reason to assume that new resistance has developed and it can assumed that you will continue to respond to this class (unless the side effects prevent you from taking them). However, as you correctly pointed out, 2 drugs like in Dovato provides a smaller chance of side effects.

I must also reiterate that Dolutegravir is not everyoneís cup of tea. For me it works and given its high barrier of resistance itís my backbone treatment and keeps me U.

Altogether, I suggest you continue looking out for yourself, may want to consider the above and keep us posted on how you proceed, best Matt

Offline Quint1976

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Re: Multiple Side-effects
« Reply #10 on: August 22, 2022, 10:51:35 am »
Thanks Matt for your contributions to my story.

I don't believe what she said either so i asked for a second opinion and contacted a specialized laboratory today who do resistance testing for hiv to see what their opinion is.
So i am actively working on resolving this now, something which i should have done earlier.

It's a learning experience for me and both your and Jim's contributions help me with this process....

Thanks again guys and i will keep you updated 👍
Open Your Mind To Possibilities

Offline Quint1976

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Re: Multiple Side-effects
« Reply #11 on: September 25, 2022, 05:15:00 am »
Hi everybody,

Just a little update on how things have gone by the last month or so.

So after everything we talked about in this topic i started talking to a biochemist from one of our national bloodbank- and research labs and asked him about the possibility of testing resistance.
He told me that there would be no problem to test resistance for meds as long as i had a viral load of at least 500 copies per unit blood.
Now he did explain to me that it could happen that mutations (read resistance) could not show up during testing and therefore the results could be a little questionable.
His opinion was that my doctor wanted to say that but it came out all wrong.
Also he said that testing can be done while on meds but that that usually was done when there is a suspected rising resistance to the meds used at that moment when testing revealed spikes in viral load when normally you would expect an undetectable load.

All in all he was confident that if i requested such a test the results would be reliable enough to make a conclusion.

So i have been experiencing various problems recently concerning my health.
I've been very dizzy, having headaches, getting muscle spasms in my feet and lower legs , having sweat attacks, having my heart racing for no reason, having hot flashes and more complaints so i went to my personal physician.
He said that it could be a number of things or just due to me being stressed/depressed.
He asked me to talk to my specialist in the hospital for a new check-up of my HIV and so i called and i got an appointment for two days later.
Now yesterday i got an email saying there were new test results in from the bloodwork we had done.
My CD4 count dropped from 470 early August to 410 now and my viral load went from 50.800 early August to 96.000 now.....while not a major drop for my CD4 i am reaching the minimum required bottom line of 400.
I was going to return by the end of November for a check-up but i expect that when i do my CD4 count would be well below 400 and my viral load well above 150.000  :o
So conclusion while it may not explain my complaints i am however very worried about how this is evolving.
My specialist is going to call me tomorrow to discuss these results so we shall see what she is going to say about all this.

Keep you guys posted and thanks for listening and responding to my messages  :)
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Offline Jim Allen

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Re: Multiple Side-effects
« Reply #12 on: September 25, 2022, 06:07:33 am »
Hiya,

Sorry to hear that you have been feeling unwell and about the depression; not sure if you are getting support with the depression, but I wish you all the best in managing this condition and hope you feel better soon.

Also, hope you can revisit the doctor and, this time, treat whatever else makes you feel unwell.

Regarding HIV and HIV treatment, look CD4s are not a measurement of health, and we know HIV uncontrolled does damage even with good CD4 levels so the sooner you can get things sorted, the better.

I'm really surprised about the resistance testing answers you are getting, feels like travelling back in time or talking to someone getting treatment in a 3rd world nation.

If you ask me, the same can be said regarding the treatment history; instead of trying something different, you essentially are given and keep taking the same drugs or components at least and somehow are expecting a different outcome   :o It's very odd.

Anyhow, hopefully, your next appointment goes well, and you can start treatment soon, something different and better suited to you.  :)

Take it easy.
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Offline Quint1976

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Re: Multiple Side-effects
« Reply #13 on: September 25, 2022, 07:37:14 am »
Hey Jim,

Thanks for your message.

The depression thing is something that is a part of me aka chronic so i will never get rid of that problem but it could be a bit more manageable.
I am working on that together with my psychologist and hope to get some kind of improvement on that but cured i will never be.

I am not even bothered with that resistance thing anymore.....i am choosing to ignore that and when the specialist calls me tomorrow i will talk to her about choosing other regimens instead of the basic Truvada component i have had in basically every treatment i tried.
I already mentioned Dovato last Tuesday and she was open for that so we'll see what happens.
Also i just saw another result come in (number 27 hahaha) for iron and i am below the minimal level required so maybe that is a factor.

We'll see and i will post more when i talked to my specialist in the coming week.
Open Your Mind To Possibilities

Offline Matths

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Re: Multiple Side-effects
« Reply #14 on: September 27, 2022, 06:53:57 am »
Hi again, thank you for this update. I wish you best of luck for your upcoming discussion. Smart move to not overthink what anyone says. Except what Jim noted: untreated HIV does damage. Therefore, take advantage of what modern treatments can provide and get back on treatment. And tackle the various health concerns, including mental health, step by step. Itís a journey and it seems you are getting back on track. Best of luck, Matt

Offline Quint1976

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Re: Multiple Side-effects
« Reply #15 on: November 26, 2022, 04:36:49 am »
Small update :

I went to the hospital last Wednesday for a checkup and got the results back from the latest labworks.
Well with a VL count of 185.450 and a CD4 count of 385 (viral load doubled numbers again since September !) i really had no choice then to discuss taking meds again.
Did keep the pointers from you guys in my head so i told the doc that i don't want the same components again like i had from the last 5 tries !
She said ok then we try Dovato and see how you react.

Well took the first pill Thursday and since i'm only just started there is no telling how it will go but for now i feel fine without any major side-effects.
The only weird thing i feel at the moment is that my temple hurts on the left side of my face but nothing major.
I'm determined to sit this out hoping that it will go away and finally give me the matching pill that i needed to go on with for the rest of my life (bar any changes like say a cure  ;) )
Have to return for labs early January to see how Dovato is kicking HIV's ass but for now i'm hopeful and i haven't been for a long time.

Keep you guys posted and have a great weekend !
Open Your Mind To Possibilities

Offline Matths

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Re: Multiple Side-effects
« Reply #16 on: November 26, 2022, 08:24:42 am »
Wise decision to start treatment and Iím a big fan of Dovato. I hope it works for you too. The key here is really in just taking it, making it part of your daily routine and it will do the trick. Keep us informed with your follow-up lab results in January! Enjoy the upcoming holidays! Best Matt

Offline Quint1976

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Re: Multiple Side-effects
« Reply #17 on: November 27, 2022, 04:54:55 am »
Hi Matt,

thanks for your reply.
will do and keep you guys updated.

I wish you Happy Holidays in advance as well 👍
Open Your Mind To Possibilities

 


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