Biktarvy is not making me smile as in the commercials

[STLPOS17]

Hi guys,

I live in a provincial Midwestern backwater so access to competent Healthcare and support groups is limited. Online research helps, but there is so much variation in symptoms and experiences online, it's hard to gauge.

I've been on Biktarvy for a few months and while my VL has dropped to undetectable levels and my CD4 has improved much faster than expected, I am having some problems. Rashes, blue spots all over my body- not on the surface like KS, but easy to see. I've also continued to have neurological problems and memory loss. Still having sweating, muscle and bone pain.

Can anyone confirm if this is normal? My previous medical team said this was just in my head, that they didn't want to spend the money on further tests and to wait for the medicine to work. Would anyone like to share their experience?

[Jim]

Biktarvy is not making me smile as in the commercials

 

Yeah, do you mean this one? So the smiling writer signing her books, and the guys hiking through the woods? I might smile on camera if someone paid me, or if I was a published author or if I was on what appears to be some outdoor sex hike through the woods. 

Anyhow, Biktarvy doesn't make anyone smile, and it certainly doesn't fix you, it only interrupts the lifecycle of HIV, that's it, and your VL is now suppressed, so that means it has worked and is working perfectly.

https://www.poz.com/basics/hiv-basics/hiv-life-cycle

so much variation in symptoms and experiences online

Would anyone like to share their experience?

So my story isn't going to help you and reading stories online will not fix your problems, of course, when hearing or reading these things there are going to be differences, it's not just a simple HIV diagnosis, it is AIDS and we were all diagnosed in different decades, with different meds and broken systems, now a lot has changed but also all had different OIs, Trauma, levels of damage done & other physical & mental issues etc before even starting to deal with HIV. 

I am having some problems. Rashes, blue spots all over my body- not on the surface like KS, but easy to see. I've also continued to have neurological problems and memory loss. Still having sweating, muscle and bone pain.

Can anyone confirm if this is normal? My previous medical team said this was just in my head, that they didn't want to spend the money on further tests and to wait for the medicine to work.

I'm not surprised, you have AIDS and were hospitalized with multiple serious and potentially life-threatening issues before they found out your HIV status.

Now you only just started HIV treatment and your CD4 count might have bounced back but some people with AIDS will get sicker before they get better as the immune system starts functioning again and dealing with stuff it had ignored, It is also why HIV treatment is sometimes delayed when dealing with AIDS.

Anyhow, long story short, even if some level of IRIS (Immune Reconstitution Inflammatory Syndrome) isn't an issue for you, then healing and recovery can still take a while and generally, I would not be talking about a few days, weeks or months and I am not going to sugarcoat it that some damage can be permanent.

What I would stress is its not all doom and gloom, early days and you have just started this journey. Your body has suffered, give it time to heal and work on things but don't ignore issues, so do report any new or worsening issue to your healthcare provider, as we also get other health issues, just like the rest of the population and you don't want something that requires treatment/care to be missed.

The only other thing I would do if I were you is to speak to another Neurologist for a second opinion and to rule out any underlying causes for the problems, also, it can't hurt to talk to a Psychiatrist, you have been through a lot. Have to be honest, if I were in charge of HIV care, it would be linked to psychiatric care.

I wish you well and I hope you start to feel better soon. Hugs.

[Tonny2]

              ojo.        Hello there!… I’m sorry to hear that you are still feeling. Bad. Hopefully you will feel better as time passes by. You are not alone, we are here for you. Maybe you should listen to Jim advice and sick some mental professional help. Definitely eat will make you feel better… Please keep us posted and good luck… Hugs

[STLPOS17]

Hi Everyone,

I was recently reading some older posts about Biktarvy and grapefruit and noticed that there is a lot of valuable information but it can be difficult to find it easily.


I began Biktarvy 3 months ago and my VL quickly dropped from nearly 800,000 copies/ml to under 40 now. My CD4 increased from 70 to 420. But, I began to have neurological problem with my right leg again, sweating increased, I developed a rash, developed blue spots on my body. So, while my numbers have improved, and I am happy to be receiving treatment, I still do not feel I am recovering the way I anticipated.

So, here are my thoughts on recovery:

-Recovery isn't about numbers, it's about what we can achieve in our lives. I am doing much more now than I have been able to do in a long time. My body is not improving nearly as fast as it would have before I was sick, but I am still doing more each day.

-Side effects are normal. My doctors encourage me to ignore the problems I'm having. I didn't like this at first so I changed doctors. But, there is truth to what those doctors were saying. If the medicine allows me to get out of bed and live my life more each day, eveen if my body is still having problems, then I am living. I don't know if I will live for years, or only months before something goes wrong, but I am living each day.

I also want to say that while the blue spots on my skin are truly concerning, the rash mostly went away near the 3 month mark and the hardness and size of my lymph nodes in my throat, neck and armpits has reduced substantially. The pain in my liver is mostly gone too. So some things are getting better and some new problems develop. I am guessing this is just the way it is going to be? I think we have to be ready for some issues to heal and new ones to develop as part of living with HIV/AIDS. What do you think, what are your experiences?

My mental health is very important. Fortunately, I have been blessed to not have too much depression this past year. I have learned to adjust my expectations from life, and I have a new, simpler job. I try to be very happy with my days and I try not to focus on my problems. I think my POV has helped a lot. Part of my POV is that I just don't care what others think and I'm far more willing to point out other people's problems if they ridicule me. So, developing a bit of attitude has helped me.

Has anyone had the muscle weakness, bone pain and neuropathy go away? I can live with it, I am just curious if it eventually heals or it's just a new feature in my life?

Online suggests that HIV Associated Neurological Disoorders (HAND) are veery bad, but my doctors tell me not to think about this. Is that because they are very bad, or has anyone had any luck with the brain healing as the medicine gets into more tissue? Again, it's annoying, but I am living my life all the same so just curious what others have experienced?

Online it seems St. John's Wort is a big no no with Biktarvy. Grapefruit is not recommended, and some suggest limiting garlic and ginger. What are your opinions? I love to cook with garlic and ginger. I have read to avoid these things for 2-6 hours before and after taking medication. What do you think?

Has anyone had any other side effects?

I rarely talk with my ex, but I will maybe 2 years after he began treatment (I don't know what he takes) his hair grew back and the spots on his neck are now gone. So, maybe it just takes this amount of time for our bodies to heal more? IDK

[Jim]

I merged your threads.

-Side effects are normal. My doctors encourage me to ignore the problems I'm having.

Sorry to hear.  You have not mentioned side effects yet, so what side effects are you having?

After initially settling in, you should not be experiencing any major or moderate side effects. Some of us will have minor side effects that we live with or adjust to but even if that is causing people trouble there are plenty of other drug combinations to try so you can find that will work for you.

Has anyone had any other side effects?

Sure, certain antibiotics give me a rash, and certain HIV meds cause me other problems, no need to go into it as my side effects to meds are all rather irrelevant to you.

Online it seems St. John's Wort is a big no no with Biktarvy. Grapefruit is not recommended, and some suggest limiting garlic and ginger. What are your opinions? I love to cook with garlic and ginger. I have read to avoid these things for 2-6 hours before and after taking medication. What do you think?

Who and where online? Based on what evidence?

Anyhow, unlike some HIV meds, Ginger & Grapefruit should not be an issue with Biktarvy. St.John's is an issue and Galic might be if you are taking Galic supplements.

Check with a qualified pharmacist.


Herbal Products: St. John’s worte,  BIC,  TAF
Coadministration with St. John’s wort is not recommended.
Page 13: https://www.gilead.com/-/media/files/pdfs/medicines/hiv/biktarvy/biktarvy_pi.pdf

Does ginger effect Biktarvy? No.
https://i-base.info/qa/21834

https://www.hiv-druginteractions.org/checker

Do Not Coadminister
Bictegravir/ Emtricitabine/Tenofovir alafenamide (BIC/FTC/TAF) & St John’s wort
Quality of evidence:
Very Low
Summary:
Coadministration has not been studied and is contraindicated in the product labels for Biktarvy as St John’s wort may substantially decrease bictegravir and tenofovir alafenamide plasma concentrations which may result in loss of therapeutic effect and development of resistance. However, a recent study suggests a low risk of a clinically relevant pharmacokinetic interaction with low-hyperforin formulations (<1 mg/day) of St John’s Wort (hyperforin is the constituent responsible for induction of CYPs and P-gp). Coadministration may be considered with St John’s Wort formulations that clearly state the hyperforin content and which have a total daily hyperforin dose of 1 mg or less. No interaction is expected with emtricitabine.

Bictegravir/ Emtricitabine/Tenofovir alafenamide (BIC/FTC/TAF) & Garlic
Potential Interaction
Quality of evidence: Very Low
Summary:
Coadministration has not been studied. Garlic supplements have been shown to decrease unboosted saquinavir AUC by 50% in a clinical trial and there is a case report of treatment failure due to garlic cloves (six garlic cloves three times weekly) decreasing ritonavir-boosted atazanavir trough concentrations by ~70%. This effect has been attributed to the induction of intestinal CYP3A4 and/or P-gp by garlic. Tenofovir alafenamide (the prodrug of tenofovir) is a substrate of P-gp and its absorption could decrease due to induction of intestinal P-gp by garlic. Furthermore, garlic could also decrease the absorption of bictegravir as it is metabolized equally by CYP3A4 and UGT1A1. Patients should be advised against the use of garlic supplements.