Author Topic: Multiple Side-effects (Read 15691 times)

Quint1976 · « **on:** August 20, 2022, 04:02:23 pm »

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 · « **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.

Quint1976 · « **Reply #2 on:** August 20, 2022, 05:29:22 pm »

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 · « **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 “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 · « **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 ?

Matths · « **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 today’s tools which are much more precise than back when your “resistance” pattern was first established. I would encourage you to initiate that step if it hasn’t 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 don’t 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 today’s 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

Quint1976 · « **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.....

Jim Allen · « **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.

Quint1976 · « **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 !

Matths · « **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 everyone’s cup of tea. For me it works and given its high barrier of resistance it’s 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

Quint1976 · « **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 👍

Quint1976 · « **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

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

Jim Allen · « **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

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.

Quint1976 · « **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.

Matths · « **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. It’s a journey and it seems you are getting back on track. Best of luck, Matt

Quint1976 · « **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 !

Matths · « **Reply #16 on:** November 26, 2022, 08:24:42 am »

Wise decision to start treatment and I’m 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

Quint1976 · « **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 👍

Quint1976 · « **Reply #18 on:** January 11, 2023, 02:49:51 pm »

Small update :

I went to the doctor at the hospital today to find out how Dovato has been working in my body.
Well the positive news is that i went from 185.273 VL end of November to < 20 VL in 6 weeks so i’m undetectable now.
No CD4 news since they didn’t test that but that was 385 last time so i would assume that would get better now.
Also side effects wise i’m experiencing small but usual suspects and i can live with that for now.
All in all i’m happy with the results 😃

Next appointment end of May.

Jim Allen · « **Reply #19 on:** January 11, 2023, 03:38:51 pm »

Hiya, great update.

Glad switching away from TAF/TDF has worked out well for you in terms of suppression and that it's manageable. Hopefully even the small things will continue to settle over the upcoming months.

Matths · « **Reply #20 on:** January 11, 2023, 05:35:22 pm »

Hi again, congratulations to a great update. I’m glad it seems you are on a good path forward. Best Matt

Quint1976 · « **Reply #21 on:** January 12, 2023, 04:01:11 am »

Hey Jim and Matt,

Thanks for your messages, much appreciated.

It indeed looks like the decision to leave the TAF/TDF stuff behind and go for the Dovato option works out for me so i'm happy with that.
Hopefully those side-effects i do have will go away after a couple of months, i'm not even two months in so its early days yet.

Thank you guys for giving me the info and courage to take this step !
Much appreciated 🙏

Greetings Quint

Quint1976 · « **Reply #22 on:** February 21, 2023, 04:02:05 am »

Hi all,

I wanted to write a little message today about my current status with Dovato.

Since a couple of weeks one of my old "friends" has returned to haunt me and cause me a lot of problems. I'm talking about side effects and specifically joint- and muscle pain which is only getting worse by the day. I'm at the point that moving is so painful that most of the day i'm just sitting or lying down while normally i go out and exercise for at least and hour and a half but i can't. When i turn my head the joints and muscles give me a pain shot that won't quit !
It doesn't do my mood any good either which makes life even harder.
Haven't talked to my healthcare providers yet because i feel like i'm giving in or that i whine too much or am overblowing this......

My head tells me i need to stop but on the other hand there are more things to consider than this pain. Like exposing my partner to hiv again, not to mention my health going down the drain again.

I feel like a broken record but still wanted to write it down here and hope you guys have some insights

Jim Allen · « **Reply #23 on:** February 21, 2023, 04:23:26 am »

Hiya,

Glad most of the issues seems to have been resolved by simply switching.

Sorry to hear the joint pain has returned. HIV and joint and muscle pain aren't unheard of besides prehaps other unrelated underlying issues or prehaps related issues like chronic inflammation playing a role.

Keep working with your healthcare provider on this remaining challenge, it sounds like a new investigation is needed into the cause and management of this issue, and keep taking your HIV meds.

Quint1976 · « **Reply #24 on:** February 22, 2023, 06:23:04 am »

Hi Jim,

Thanks for your message.

It will be a short reply since i'm sick.....after 3 years of dodging it i got a positive result yesterday. I got covid now which is making me having the shivers and an fever of 39.2 degrees pffff $:-\$

Anyway i have talked to my healthcare provider and she said it probably has more to do with the covid infection that my joints and muscles are sore.
Let's hope that is indeed the case, we will monitor the situation going forward.

Have a great day all.

Jim Allen · « **Reply #25 on:** February 22, 2023, 06:24:41 am »

Really sorry to hear about the COVID and hope you feel better soon without lingering COVID issues.

Matths · « **Reply #26 on:** February 23, 2023, 08:41:17 pm »

Hi there, hope you recover quickly and congrats to good treatment outcomes so far. Keep taking your meds, and keep us posted, best Matt

Quint1976 · « **Reply #27 on:** February 24, 2023, 04:21:30 am »

Hey guys

thanks for your input and words of support, much appreciated indeed 💪

my fever is going down again thank god and i am getting a little better now even though it was only 4 days ago that i got a positive test.
But man i hope i can go without Covid for several years to come since its not a "fun" experience.

Anyway thanks again for the support, keep you guys updated.

Have a great weekend 🙏

byathread · « **Reply #28 on:** March 01, 2023, 08:15:37 pm »

I just posted regarding my experience with Cabenuva which is the bi-monthly injectable. Like you I had pretty severe side effects from a lot of hiv medications. Worse than that the doctors involved didn't even consider I was having side effects because they lasted far beyond the Initial two weeks of first trying the new medication or the side effects would suddenly start after months of taking a new medication.

All that aside I must say my experience with Cabenuva has been amazing. The only irritating side effect (I've been on it for a year) is persistent lower back pain when sitting or lying down. It lasts for about 5 weeks post-injection then goes away. Trouble is that the next dose is due on week 8 so I get a 3 week break from the back pain before it starts up again. Standing and walking there is no pain so at least that is a plus. But other than that there is no vomiting, headaches, insomnia, nausea or diarrhea. Hope this helps!

Jim Allen · « **Reply #29 on:** March 02, 2023, 05:27:16 am »

Quote from: Quint1976 on February 24, 2023, 04:21:30 am

Hey guys

thanks for your input and words of support, much appreciated indeed 💪

my fever is going down again thank god and i am getting a little better now even though it was only 4 days ago that i got a positive test.
But man i hope i can go without Covid for several years to come since its not a "fun" experience.

Anyway thanks again for the support, keep you guys updated.

Have a great weekend 🙏

Good, you were starting to feel better.

How are you doing now?

Quint1976 · « **Reply #30 on:** March 02, 2023, 05:34:33 am »

Hi byathread,

Thanks for your message.

Good to read that the Cabenuva injections are better suited for you even though the back pain is a part of it most of the time.

I had to fight against many doctors who thought i was just fooling them with my complaints of side effects months after starting the meds. It felt like an uphill battle most of the time. I get it though, most people react perfectly fine on the meds so they just assume that its your imagination or something else not related to the meds.
I know just two other people over here in Holland who react just as badly to meds as i do out of 20.000 hiv patients here so its difficult to find support and understanding.

Even though Dovato seems to work out for me i'm still on high alert watching my body like a hawk for anything out of the ordinary. There is just no trust , for now at least.
It helps that there are other people like me post their stories so i'm grateful for yours 🙏 thanks for that and have a great day !

Hi Jim,

Was just typing a reaction to byathread's post when i was alerted to your message.

Most of the Covid complaints are gone except for a burning sensation in my nose and my taste/smell is still gone.
My doctor is going to call me today about that nose thing since that could be an infection.....but the taste/smell should return soon enough.
I hope it does but with my luck i would not be surprised if i'm stuck with it 😒

Jim Allen · « **Reply #31 on:** March 02, 2023, 05:46:43 am »

Quote from: Quint1976 on March 02, 2023, 05:34:33 am

Hi Jim,

Was just typing a reaction to byathread's post when i was alerted to your message.

Most of the Covid complaints are gone except for a burning sensation in my nose and my taste/smell is still gone.
My doctor is going to call me today about that nose thing since that could be an infection.....but the taste/smell should return soon enough.
I hope it does but with my luck i would not be surprised if i'm stuck with it 😒

Glad it's getting better and good luck with the doctor today. Hopefully, it's not an infection, and long term the covid issues keep subsiding for you.

Keep us posted and hugs.

Quote

It felt like an uphill battle most of the time. I get it though, most people react perfectly fine on the meds so they just assume that its your imagination or something else not related to the meds.
I know just two other people over here in Holland who react just as badly to meds as i do out of 20.000 hiv patients here so its difficult to find support and understanding.

Glad Dovato is working out. Not trying to undermine your experience, but I also understand the Doctors position, plenty of clowns they have to deal with, not to mention the ones that claim silly things like HIV meds shrunk my legs or gave me herpes

So I guess that blinds them a bit to people with real issues.

TDF/TAF works fine for most, but I also know there have been more than two people in The Netherlands who have had extremely difficult times with TDF/TAF. Glad that finally switching away from it seems to be working for you.

Quint1976 · « **Reply #32 on:** March 02, 2023, 06:23:33 am »

Quote

Glad Dovato is working out. Not trying to undermine your experience, but I also understand the Doctors position, plenty of clowns they have to deal with, not to mention the ones that claim silly things like HIV meds shrunk my legs or gave me herpes So I guess that blinds them a bit to people with real issues.

TDF/TAF works fine for most, but I also know there have been more than two people in The Netherlands who have had extremely difficult times with TDF/TAF. Glad that finally switching away from it seems to be working for you.

I don't think you are undermining my experience Jim, you just have a wider field of view since you talk to more people than me. I respect your opinions so i hear what you are saying.

I am what they call a multi-responder when it comes to medications of all kinds. I always react in lighter or heavier ways so i'm kind of used to it.
I get what you are saying in regards to the TAF/TDF but when you have a doctor who excluded many meds ,due to several concerns she had, your stuck with those combo's with the TAF/TDF.
I've had horrible experiences with hiv meds, i'm an error in what are considered well tolerated meds for people. Those experiences are here to stay and i act on them. I am not a easy patient, i am a VERY difficult patient with good reasons to be one (which have nothing to do with meds) to protect myself.

For now the Dovato does its thing but i am only using it for 3 months now so anything is still open.
Don't get me wrong i hope it does go well 😇

Quint1976 · « **Reply #33 on:** May 07, 2023, 10:51:15 am »

Hi , back again with a little update…..

well i don’t know how to write this down in this message because i’m really depressed about my current situation but here goes…
in one of my last messages i wrote that i’ve been dealing with some side-effects mainly the muscle and joint pains again.
i talked to my healthcare provider about it a couple of times and in the end she said i only have two options.
First i can accept that this is how it is and try and live with it, second choice i can stop taking the Dovato and live without meds since there are no viable options anymore.
Since i could barely move about with having the muscles in my shoulders, back, legs and arms are hurting every day without stopping.
Painkillers would also be a no go since my doctor thinks it won’t help all that much, especially not for my back.

After much debating i think i have no other choice than to stop the Dovato

I told my doctor as much last week that i would likely stop and she was very annoyed by that choice.
So much so that she basically said that it would be better to cut back on the check-ups to maybe once a year since in her words i am not a patient wanting medical help.

Anyway i am so down right now that i don’t know what to do anymore…why do i even bother

Jim Allen · « **Reply #34 on:** May 07, 2023, 11:06:30 am »

There are other treatment options, this is essentially only your second combination.

Anyhow, sorry to hear you and your HIV doctor have had a falling out and I presume it's the GP (Huisarts) that doesn't want to help with pain management, i wish you all the best.

Tonny2 · « **Reply #35 on:** May 07, 2023, 02:19:04 pm »

ojo. @Quint1976: I’m sorry to read your post, I don’t know where you live but, if you are taking Dovato, you have to live in a first world country. As Jim mentioned, you must have more treatment options. You said that you are depressed. I don’t know if it is something that you had left before with because dulotegravir may cause depression. maybe if you can have a second opinion.

I’ll be leaving with HIV/aids for so many years that, I have learned to live with pain. So, maybe an antidepressant or even maybe Lyrica, may help you with your pain. I hope and you don’t stop your treatment because what happens when people don’t take HIV treatment, they have no idea how painful and complicated life becomes and feel you die. so, maybe you should try to look for some psychologist, help to help you understand better your situation with the pain because sometimes, I am sorry to say this, but everything is in our heads… wishing you the best, and please keep us posted.

Quint1976 · « **Reply #36 on:** May 07, 2023, 02:59:54 pm »

Hi guys,

thanks for your replies.

@ Jim :

No it was my specialist that said that she won't prescribe or refer me for pain treatment. She thinks that would only make it worse since those would likely give me side-effects as well and the burden would be too great.
In regards to the other treatments she wasn't willing to look into those because she thinks i would always have problems with the meds. She wants me to stick with these and if not then it stops....

@ Tonny :

Well i live in The Netherlands which in regards to healthcare is a great country to live in, medical care is very affordable here.
I've been battling depressions for years (since i was 21) and have had several attempts at trying to end my life. It's part of my personality and chronic in nature and i've seen many many psychologists and other mental healthcare providers. Sometimes i have good moments and sometimes i have bad ones and it fluctuates often so that makes it hard.
But i do agree with you that your mind can cause problems for your body, psychosomatic response they call that and basically means you channel your mental problems through your body and can cause many problems.
Also i understand that taking no meds for my HIV is a very bad thing, i have seen friends die of aids so i know bad that can turn out $:-\$

I have very little energy at the moment to think straight and logical so that's a big problem. I do see a psychologist and a specialist nurse for the mental problems and they try their best to give me tools to remain stable but at the moment i am tired.

Tonny2 · « **Reply #37 on:** May 07, 2023, 03:56:05 pm »

pjo. I’m still sorry for your mental issues but I’m glad you are being treat it. You live alone?.
I suppose you’re a shave your specialist knows about your depression, I don’t know why she is prescribing Dovato to you. Jim mentioned that this is your second treatment, may I know what was the other treatment?. I really feel bad for you, dealing with mental issues like yours he has to be pretty difficult. When I feel down, I take my dogs for a walk or I listen to music I even sing I don’t carry my neighbor screams to me shut up, that was a joke, my friend said that I don’t sing that bad . that house me to relax…Lyrica might help you for your pain and I think he used to be an antidepressant. Talk to your doctor about it… you need someone to talk to , feel free to send me a PM. Sometimes it’s good to talk to someone.
.. wishing you the best and I hope you find a different treatment to help you with your HIVzz please keep us posted…hugs

Quint1976 · « **Reply #38 on:** May 07, 2023, 04:37:13 pm »

Hi Tonny,

yeah it's a struggle sometimes but i try my best to keep going....
No i have a partner (male) i live with and he helps me best he can but sometimes its frustrating for him too.

My specialist does know about my depressions and she was reluctant to prescribe Dovato to me in the beginning for that reason and also because she saw that there was a possibility that i had resistance to it. In the end it was about having no other options in her opinion that she said we'll see what happens with Dovato.
I've had several meds that i tried like Biktarvy, Genvoya, Stribild, Delstrigo and Viramune/Truvada combo but most have several key ingredients that are the same and that is what Jim meant by only having tried two options (unless i am mistaken).

I try to listed to music or watch a movie when i'm depressed to distract me or i go walking in the forrest and usually it helps but not always. I'm deep in the cycle of depression right now so its more difficult.
I will look into that Lyrica but it sounds familiar to me......

Again thanks for reading my rants...

Tonny2 · « **Reply #39 on:** May 08, 2023, 07:56:29 pm »

ojo. Hi again…I’m glad you have a partner so you don’t have to deal with the situation alone…I just hope you find peace of mind so you can have a better quality of life… please keep us posted…hugs

leatherman · « **Reply #40 on:** May 08, 2023, 08:11:06 pm »

Quote from: Quint1976 on May 07, 2023, 10:51:15 am

i talked to my healthcare provider about it a couple of times and in the end she said i only have two options.
First i can accept that this is how it is and try and live with it, second choice i can stop taking the Dovato and live without meds since there are no viable options anymore.

I tried to follow this conversation but….LOL It got rather complex. However, I think there are still options. For example I take Tivicay (dolutegravir) along with Prezcobix (darunavir + cobicistat), that’s an II, PI, and booster. Am I correct in assuming that you hadn’t tried dtg or any Pis yet?

Quote from: Quint1976 on May 07, 2023, 10:51:15 am

I told my doctor as much last week that i would likely stop and she was very annoyed by that choice.
So much so that she basically said that it would be better to cut back on the check-ups to maybe once a year since in her words i am not a patient wanting medical help.

Well, your doctor may be as frustrated at you. It’s pretty rare these days to have a patient complain about so many different regimens. I’m not saying you’re not having issues, but from her point of way, you are a problem….and people hate problems. Trust me, I’ve had my fair share of weird HIV-related and non HIV-related issues and have had a few doctors get exasperated by me. I even stopped meds twice (in my defense, the ones I was taking were making me deadly vomiting sick every day, and there were no other meds on the market) which of course got me labeled as “non compliant” and made me a “problem patient”.

Quote from: Quint1976 on May 07, 2023, 10:51:15 am

why do i even bother

to stay alive.

In the late 90s, twice I was stuck on medications that gave me incredibly bad side effects with no other medications available. Twice I decided the side effects were worse that untreated HIV. Vomiting several times a day every day, along with dealing with other negative side effects, will make you think that way. Twice I ended up in the hospital nearly dying.

Nearly dying twice was at least twice too many times, and I realized that I would have to take control of my own situation. While struggling just to stay alive, I found a new doctor, I read up every bit I could about the medication options, and I started a journal of my issues. I find doctors will believe you more about issues if you can document them. Doctors are always more likely to help patients who are concerned and involved in their own care. This journal documented when I had side-effects, how bad they were, anything that might have contributed to them (foods, activities, etc), remedies I used to compensate for the side effects, etc.

It was just dumb luck for me as we moved into the 2000s that I had stayed alive long enough for new medications to finally be coming to market. So as the new doctor and I worked through my journal of side effects, we began to work through the medications. It was definitely hit-and-miss for a long time… as in years. Each new medication we tried meant months of waiting to see if I would have more positive blood results (VL going down) and to see if any negative side-effects would dissipate or could be compensated for. At one point, I deemed it all a grand success when the medications only made me throw up once a week.

I’ve been taking meds for 30 years now and in that time I’ve used 25 different HIV meds. Although I’ve never been on a one-a-day pill, two pills a day without side effects is certainly better than 28 pills a day I took at one time.

So why should you bother? To stay alive! But of course, that doesn’t just happen. You have to work on making the difference. Try to have patience with your doctor (see what I did there? LOL) Work on documentation to see what sort of patterns might be happening with your side effects. Study up on the medications more (but ignore the listed side effects. Those only affect a small percentage and you should never expect to be in that percentage….that’s my long term survivor advice. LOL) and think happy thoughts. Saying "think happy thoughts" may sound trite but trying to keep a positive optimistic view really does help too

Quint1976 · « **Reply #41 on:** May 09, 2023, 08:38:11 am »

Hi guys

Thanks for your time and effort to reply to my messages, i do appreciate it !

@Leatherman,

Quote

I tried to follow this conversation but….LOL It got rather complex. However, I think there are still options. For example I take Tivicay (dolutegravir) along with Prezcobix (darunavir + cobicistat), that’s an II, PI, and booster. Am I correct in assuming that you hadn’t tried dtg or any Pis yet?

hehehe the fact that you took time to read it and make sense of it makes you a rockstar in my book

Well Dolutegravir is part of the Dovato regimen i am currently taking and the other part is Lamivudine, so basically a two-component medicine.

Quote

Well, your doctor may be as frustrated at you. It’s pretty rare these days to have a patient complain about so many different regimens. I’m not saying you’re not having issues, but from her point of way, you are a problem….and people hate problems. Trust me, I’ve had my fair share of weird HIV-related and non HIV-related issues and have had a few doctors get exasperated by me. I even stopped meds twice (in my defense, the ones I was taking were making me deadly vomiting sick every day, and there were no other meds on the market) which of course got me labeled as “non compliant” and made me a “problem patient”.

She probably is very frustrated with me as much so as i am, but she knew what she was getting herself into though as i said to her in our very first appointment i am not a standard patient and can be at times very difficult. She only laughed back then and said she could handle it and now 4 years later she isn't laughing anymore. They all tell me i should take more time for my body to get used to the meds but let's be honest even if i waited two years (i was on Biktarvy for over a year) the problems won't go away as i have experienced with many medications. I react to all meds known to man in one way or another from only very mild effects to having to be hospitalized bad effects. I can see that doctors find me frustrating or a problem as you said Leatherman but i cannot change the outcomes from the past, the are as they are and i cannot lie just so they won't have to put in more effort just for me.
I am very outspoken about what i think or feel and many doctors here seem to not be used to that but i do that so they know how to help me best, not to be a nuisance.

Quote

to stay alive.

Leatherman you are a surviver in every meaning of the word and i can only respect the way you try and make every day a good day.
I mean i have not faced those challenges you have and so i should be thankful with what we have today in medical care for hiv patients, and i am even though it doesn't sound like it.
When you deal with mental issues and the hiv and other things its hard to find something good in every day, especially when you don't feel understood by doctors. They look at me and think it is all in my head and not because of side-effects even though there are many examples in my past that say otherwise. When you get that label of being a psychiatric patient they write everything off to that when it clearly is not.
That's why i feel the need to defend myself every single day and especially to doctors since they don't get me.
Anyway i am dragging, my point is i try every day to make the best of it but at the moment i am too tired to do anything and that's due to the depression kicking my butt.

When i have more energy and am less in my head i will contact my specialist again and talk to her about this situation to see if there is a solution. For now its better to focus on myself and keep my world simple.

Quote

Try to have patience with your doctor (see what I did there? LOL)

LOL

StandTro · « **Reply #42 on:** May 13, 2023, 08:47:34 pm »

Hi!

I'm sorry, you are having issues with Side effects medications.
Have you ever try (Odefsey)?
I've been using that for years, and so far, I have had no side effects at all.

Quint1976 · « **Reply #43 on:** May 14, 2023, 05:10:02 am »

Hi !

No haven't tried Odefsey but i can't either.
The rilpivirine that's in this pill doesn't play nice with another medicine i use and that breaks it down way too fast for Odefsey (or complera , the old version) to work properly.

Do appreciate you thinking with me !

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