CircularNatural - Intro thread.

[CircularNatural]

Hello, I am from Argentina as well. Received muy diagnosis recently and just finishing my first months on Dovato. Until now, no side effects. I wonder how do you buy meds to keep in stock, I'm afraid of what you mentioned about med shortages related to gov't or country issues. I thought that you couldn't buy these kind of meds here due to regulations. Any info would be appreciated. Thanks

[Jim Allen]

Hiya,

Welcome to the forum, sorry to hear about the diagnosis.  I've split your post into its own thread as it's standard to have an introduction thread as a new member, and we don't post our issues or concerns in other people's threads.

Glad to hear that you have started treatment. When will you have follow-up labs already to see how the viral load is doing? How are you feeling/coping otherwise?

Anyhow, I doubt you will be able to order Dovato. I'm not sure, but you might be able to order dolutegravir and lamivudine separately, though.  Other forum members order their treatments online etc. They would know better and might chime in on the subject.

Best, Jim

[CircularNatural]

Hey there, sorry to hear that this neuropathy's causing you distress. Do you mind if I ask what is it related to? Is this due to HIV or the meds, or both? Is neuropathy related to a specific medication? I'm on Dovato and read that Lamivudine could cause neuropathy, which worries me. I've been diagnosed recently and I believe that I have had HIV for no more than 3-4 months (got tested after having the acute syndrome). The only "symptom" that I feel for now is a little pain on knees and wrists but maybe I had that before, just that now I'm constanty checking my body for signs or issues.
I already had anxiety and chronic insomnia before all of this, and take zolpidem 10mg and pregbalin 75-100mg daily (for anxiety not pain).
Thanks for reading, I would find any info related to neuropathy and chronic pain useful.
Best regards

[Jim Allen]

Hiya,

I moved this post and merged it here from my vampire thread.

Reading PN, well untreated HIV has also been shown to cause nerve damage & earlier HIV meds that you are not taking did contribute or caused the condition. Newer HIV meds, although many come with the same warnings, have not shown this risk. You're taking DTG & 3TC, and even the older (3TC) lamivudine is only rarely suspected in certain situations, haven't seen anything in recent times.   

now I'm constanty checking my body for signs or issues.

Understand you are new to HIV & treatment. It can be a lot to digest and I don't think it's uncommon to hyperfocus on things at first, but extremely doubtful this combo, in such a short time has given you PN. I fancy the odds of being cured tomorrow better by some miracle. Do consult and keep your healthcare provider updated about any issues or concerns you might feel.

zolpidem 10mg and pregbalin 75-100mg daily

Ambien and Lyrica, just wondering no increased issues or side effects from this combination? How is it working for you?

I'm afraid of what you mentioned about med shortages related to gov't or country issues.

You could try the old trick of renewing your script a few days early each time to build up a little bit of stock over time. Not sure if that will work where you are based. You are not going to be able to buy generic Dovato though. You might be able to buy DTG & 3TC separately online, I've never tried that, but maybe one of the other forum members who buy drugs online will chime in.

When will you have follow-up labs already to see how the viral load is doing? How are you feeling/coping otherwise?

I presume you had labs when diagnosed, when is the follow-up to see if the drugs are working to suppress the viral load?

Jim

https://www.poz.com/basics/hiv-basics/peripheral-neuropathy
https://i-base.info/ttfa/4-side-effects-of-arvs/6-peripheral-neuropathy-d4t-ddi-rarely-3tc/

[CircularNatural]

Thanks for your replies!
So far I haven't experienced any side effects or interactions with Ambien and Lyrica regarding my (generic) Dovato treatment. I know Dolutegravir is associated with insomnia but I used to suffer from that beforehand and have not noticed anything related to mental health worsened by these meds. By the way, I'm a psychiatrist myself (and attend to my own psychotherapy and psychiatric treatments as well due to GAD/insomnia, even before HIV diag).

I will try what you suggested related to trying to get my meds a couple of days earlier to see if I can save a 5-pill blister per month (my medical insurance has approved my meds for 3 months in advance so all I have to do is contact the authorized pharmacy with my script in hand). I'll have to see what happens if I use scripts a little bit earlier each month, it might work.

Regarding my check ups, my ID doctor said to just go on with another month of meds and I'm guessing he'll want 2 o 3 months before my next blood check up. I could use my own scripts to do a blood check up, but would this be advisable? I'm feeling good in general so I'm just trying to manage my own generalized anxiety / health anxiety Generally speaking I'm coping quite well (thanks for asking).
Being a gay male, I was always scared of this since an adolescent, given the higher risk. I contracted HIV using a condom that was not apparently broken during sex so I guess that having fear does not protect you of anything, maybe that's what I have to learn from all of this

Thanks for your replies

Hiya,

I moved this post and merged it here from my vampire thread.

Reading PN, well untreated HIV has also been shown to cause nerve damage & earlier HIV meds that you are not taking did contribute or caused the condition. Newer HIV meds, although many come with the same warnings, have not shown this risk. You're taking DTG & 3TC, and even the older (3TC) lamivudine is only rarely suspected in certain situations, haven't seen anything in recent times.   

Understand you are new to HIV & treatment. It can be a lot to digest and I don't think it's uncommon to hyperfocus on things at first, but extremely doubtful this combo, in such a short time has given you PN. I fancy the odds of being cured tomorrow better by some miracle. Do consult and keep your healthcare provider updated about any issues or concerns you might feel.

Ambien and Lyrica, just wondering no increased issues or side effects from this combination? How is it working for you?

You could try the old trick of renewing your script a few days early each time to build up a little bit of stock over time. Not sure if that will work where you are based. You are not going to be able to buy generic Dovato though. You might be able to buy DTG & 3TC separately online, I've never tried that, but maybe one of the other forum members who buy drugs online will chime in.

I presume you had labs when diagnosed, when is the follow-up to see if the drugs are working to suppress the viral load?

Jim

https://www.poz.com/basics/hiv-basics/peripheral-neuropathy
https://i-base.info/ttfa/4-side-effects-of-arvs/6-peripheral-neuropathy-d4t-ddi-rarely-3tc/

[RMalongo]

Hola,

Wish you strength in this new episode of your life.
I was about to advise you to see a psychologist but you are a psychiatrist yourself…
I still did not encounter anyone around me who is hiv positive so we can share things about it, so bless this group where we can find support and a bit o peace of mind.

[CircularNatural]

Hola,

Wish you strength in this new episode of your life.
I was about to advise you to see a psychologist but you are a psychiatrist yourself…
I still did not encounter anyone around me who is hiv positive so we can share things about it, so bless this group where we can find support and a bit o peace of mind.

Thanks! If you need anything you can PM me or just ask and will gladly be of any help I can.
As you said well, my personal psychotherapy is being of much help, as well as support from friends and loved ones. Only just a few months have passed from my diagnosis / starting of treatment, I look forward that things will get easier/better with "some more water passed under the bridge".

Kind regards

Big hugs to all!

[Tonny2]

        ojo.           Hola maligno y circular, you are not alone, we are here for you…things will get better with time, trust me. Nowadays, treating hiv is easier, I know how difficult, still, getting such a dx, tell me about it, back in the day, getting and hiv dx was a death sentence, so, I know how you feel. In order to get a peace of mind, I think, it’s to turn the page about how you acquired hiv and keep looking forward, we can’t change the fact that we all are living with a virus that, firtunally for all of us, the meds can control so, we can take back control of our lives and keep making plans for the future, well, as long as you take your meds as prescribed by your doctors. DISCIPLINE AND A PISITIVE ATTITUDE it’s all you need to do to defeat hiv for a while…buena suerte a ambos


Pa. Central, I didn’t know Argentina’s government was offering dovato, good for you. I wish I could take just one pill a day. ;(

[CircularNatural]

Thanks for your words of courage, much appreciated 
Umm, here in Argentina I can see that both original and "generic" drugs are being marketed (original products such as Dovato, marketed here by GlaxoSmithKline, or Biktarvy, marketed by a national pharmaceutical but with imported product).
Generic products also exist, in my case I'm taking Zevuvir L Pack by Richmond Labs,which is essentially Dolutegravir 50mg + Lamivudine 300mg (each pill separated but they come side by side in blister packs).
All of the medicines for HIV here are managed by the public health system but you can access to them through your private insurance (like me) and these are given to you with a bonus in 100% their price, but you have to get them with previous authorization and use a certain drug distributor that assigns them to you and makes them available for local pickup at your choice of drugstore/pharmacy. The only bad thing is that you cannot go into a regular pharmacy and buy them freely with a script - even though prices are listed online for each meds (a one month bottle of original Dovato is around 400 / 450 US dollars).

Best regards!

[CircularNatural]

Hello everyone, thanks for reading and sharing your experience with me and everyone else here!

I am a 36 year-old male that has been recently diagnosed (august 2021. In september I started with my HAART treatment ("generic" Dovato: dolutegravir 50mg + lamivudine 300mg). Currently going through my 2nd monthly pill box.

I had an initial check-up where I had 600 CD4, 10.500 VL, no resistances. Rest of the tests came back normal. So far, my ID doctor said he wanted to wait a little bit before he runs my follow-up blood tests (I thought he would indicate this after 1 month with the medication?)

So far I am doing well with treatment, with few to none side effects.
The only symptom I'm currently worried about is that I notice joint pain more often than before - especially in the knees, occasionally in the wrists and ankles.

Has anybody else experienced this kind of problem? It's also true that since I got diagnosed, I seem to be much more attentive with my body, which may be amplifying "normal" signals, since I seem to feel this pains after days where I do more physical activity such as cleaning house or moving heavy objects.

Thanks for taking your time to go through this and hope to hear other experiences or information regarding knee pains / starting of treatment / Dovato experiences.

Best regards and take care!

[Jim Allen]

Sorry to hear about the joint pain.

HIV itself can cause joint pain, that said so can inflammation and a dozen other things. I've had joint pain but my experience is not going to help you.

Suggest you talk to your healthcare provider so they can check, diagnose and treat it.

[Tonny2]

Thanks for your words of courage, much appreciated 
Umm, here in Argentina I can see that both original and "generic" drugs are being marketed (original products such as Dovato, marketed here by GlaxoSmithKline, or Biktarvy, marketed by a national pharmaceutical but with imported product).
Generic products also exist, in my case I'm taking Zevuvir L Pack by Richmond Labs,which is essentially Dolutegravir 50mg + Lamivudine 300mg (each pill separated but they come side by side in blister packs).
All of the medicines for HIV here are managed by the public health system but you can access to them through your private insurance (like me) and these are given to you with a bonus in 100% their price, but you have to get them with previous authorization and use a certain drug distributor that assigns them to you and makes them available for local pickup at your choice of drugstore/pharmacy. The only bad thing is that you cannot go into a regular pharmacy and buy them freely with a script - even though prices are listed online for each meds (a one month bottle of original Dovato is around 400 / 450 US dollars).

Best regards!

            ojo.           Hola Argentino…did you say dovato (brand) cost around 400 dollars in your country?, here in the USA it’s around 2700 for a month supply in the USA, can someone tell me why?…same thing in Mexico, meds are cheaper than here, somebody told me that bikrarvy cost around 600 dollars while in here over 3500 dollars, it’s crazy.

I am on a WhatsApp group where there are lots of people from your country and nobody is on dovato, I think, they haven’t even heard about it, but anyway, I’m glad your are getting treatment for free and you will see that you are going to be ok…abrazos

[leatherman]

here in the USA it’s around 2700 for a month supply in the USA, can someone tell me why?…same thing in Mexico, meds are cheaper than here, somebody told me that bikrarvy cost around 600 dollars while in here over 3500 dollars, it’s crazy.

Sorry for a quick off-topic comment:
Having been a healthcare advocate for several decades, I can tell you why - because pharmaceuticals, for all they do creating drugs that keep us alive and healthier, are a big industry making big bucks off desperate people. These companies have paid for lobbyists to keep it that way. Republicans politicians have collected that money to continually vote to protect pharma pricing, not allow drug price negotiation (for medicare and medicaid especially), and not expand into universal health care (they still don't have an alternative for the ACA after all these years).

Every vote for a Republican candidate for the last half century is why meds are so expensive in America.

[Bucklandbury]

The only symptom I'm currently worried about is that I notice joint pain more often than before - especially in the knees, occasionally in the wrists and ankles.

Has anybody else experienced this kind of problem? It's also true that since I got diagnosed, I seem to be much more attentive with my body, which may be amplifying "normal" signals, since I seem to feel this pains after days where I do more physical activity such as cleaning house or moving heavy objects.

I am on Biktarvy (https://www.drugs.com/sfx/biktarvy-side-effects.html), but I feel similarly. Arthralgia and myalgia are both known to occur with ARVs, but because the pill is new, there is not significant data yet collected to list. I feel much more pain than I did before starting meds - and I did so *right after* starting them... but what is the alternative? Biktarvy is the gold standard for many... I feel my ID would secretly laugh if I told her I thought Gilead's miracle pill had any lasting side effects.

The problem, which Jim alludes to, is one never knows if the virus causes the issue or the meds to treat it. Or both. That uncertainty allows manufacturers to deny any problems. We know Gilead has had an issue with honesty in the past. They are motivated by profit. Nothing else.

Someone wrote on a forum I read that ARVs are our allies, but they are not our friends. I wholeheartedly agree. These are strong meds.

Don't forget... when one takes a cocktail, one gets two or three meds rolled into one, along with all the side effects of each, so in doing research, one has to research all the constituent molecules.

Each person will have some lasting side effects. If not, she or he is very lucky indeed.

[CircularNatural]

I agree with you, these are strong meds, but alas, we have to feel lucky that we can get treatment nowadays. Since my dx I've been binge-watching AIDS documentaries, most of them cover what happened with the disease in the 80s... last night I saw "How to survive a plague" (2012) which shows all of the ACT UP movement and how it helped to make the meds available faster. Even though these are sad and moving, they are also inspirational and I was left with a feeling of gratitude for all of these people that fought for access to treatment.
Also, last night I saw an online class taken from a recent medical conference that commented on treatment options and said that there are quite a few new molecules with novel mechanisms of action in study and that will soon become more treatment options (maturation inhibitors, capsid inhibitors, broadly neutralizing antibodies to name a few).
Let us hope all of these new meds may improve more our current treatment options.

Best regads and big hugs to all

[Bucklandbury]

I agree with you, these are strong meds, but alas, we have to feel lucky that we can get treatment nowadays. Since my dx I've been binge-watching AIDS documentaries, most of them cover what happened with the disease in the 80s... last night I saw "How to survive a plague" (2012) which shows all of the ACT UP movement

I will trade your myalgia/arthralgia for my neuropathy. I am not sure which is worse. 8-)

==

I never get tired of hearing Larry Kramer's "plague" speech. It still sends chills up me to hear it.

https://twitter.com/nowthisnews/status/1265846003627745281

https://www.pinknews.co.uk/2020/05/28/larry-kramer-dies-dead-hiv-aids-speech-1991-plague/