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Author Topic: Doravirine (aka Pifeltro)  (Read 8302 times)

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Offline Bucklandbury

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Doravirine (aka Pifeltro)
« on: December 27, 2024, 05:27:24 pm »
I have been mulling over switching from Biktarvy to another treatment option, probably (wrongly) thinking it might assuage my neuropathy and sever seb derm, but I am beginning to think these ailments are likely things due to ongoing latent HIV I am just going to have to live with until I die. I have probably permanently scarred my scalp and may now have hair loss from the scarring due to scratching my scalp for more than two years.

I am too pain-averse to try Cabenuva shots, and I have read mixed things about them. I have never missed a daily Biktarvy tablet since I started taking them March 16, 2021.

Doravirine is Merck's next-generation non-nucleoside reverse transcriptase inhibitor (NNRTI); it is sold alone as Pifeltro and part of the Delstrigo coformulation (doravirine/tenofovir disoproxil fumarate/lamivudine).

My ID doctor is OK with my switching, but I am not keen on worsening my depression or being nauseated. She is suggesting I could try Doravirine (aka Pifeltro) plus another pill (Descovy) that contains both TAF and FTC. That would be two pills a day versus the all-in-one Biktarvy pill I currently swallow daily to stay undetectable.

I would assume I still have no resistances. I have never even had one viral blip on Biktarvy at any six-month check-up, and my T-cell counts have climbed from a (known) nadir of 60 on March 16, 2021, to 438 (as of July 25, 2024). I am to return to see my ID January 29, 2025.

I have built up a seven-month supply of Biktarvy by shaving off one week per month when I refill. Would be a shame to not use that too.

Overall, my total lymphocyte count has never risen much below the lowest end of normal either. So there is that too, but neither have I been "sick," other than getting COVID once.
« Last Edit: December 27, 2024, 05:41:25 pm by Bucklandbury »

Offline Tonny2

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Re: Doravirine (aka Pifeltro)
« Reply #1 on: December 28, 2024, 04:19:06 pm »



          ojo.          Hello there! …Sorry to tell you but your neuropathy is here to stay, and you are right, we are going to die with it. Are you taking anything for neuropathy relief?. I’ve been living with neuropathy since the year 1996, I tried neurotin, northryptiline, amythriptiline, Lyrica, nothing worked for me just  “pisitiviline”, get it?, I’ve learnedl to live with the pain and the neuropathy’s complications like, drop foot, drop which add more pain to the cocktail of pains caused by neuropathy itself. It is what it is…my mantra to deal with this is “there are people in worse situation than mine”. Ah!, and Xanax when the pain drives me crazy (make me anxious) I take ,5mg, I take it only when need it.

About switching meds, if ain’t broken why to fix it. If you want to do it for the neuropathy, talk to your doctor…what’s wrong with your scalp, why The itchiness?…just a thought, I wish I had the chance to switch the subject be pill a day med, but again, it is what it is, at least my 17 years old treatment is still kicking hiv’s butt…hugs


Ps. Sorry for the typos. I need a new cell phone and Santa skipped my home for being a bad boy, I guess, there’s always next Christmas…I learned to be more positive now that I’m positive.  :)

Offline Bucklandbury

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Re: Doravirine (aka Pifeltro)
« Reply #2 on: December 28, 2024, 05:50:22 pm »
My PCP has me on Nortryptiline. I am only trying 10 mg per night right now. I will not try anything addictive, like Gabapentin.

I have followed your neuropathy stories on here. I am sorry about the drop foot, buddy.

I did almost pass out getting up from scooping up dog poo today. My orthostatic BP really dropped. It was worse than I remember when that happened on Metoprolol.

I may very well stick with Biktarvy. It probably isn't the cause. But my neuropathy never started until three months or so after being on Biktarvy. Probably just coincidence not causation?

The paresthesias in my feet and legs are the worst. They can make me very anxious. It only goes away at night when I am totally of my feet and in bed. Sometimes I do get them in my arms (mid arm).

My scalp is shit due to seb derm. But I scratch and pick too. They are not good spots. All on the very top of my scalp. Nowhere else. Itchy and thick. I must be very inflamed.

Offline Tonny2

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Re: Doravirine (aka Pifeltro)
« Reply #3 on: December 28, 2024, 10:04:40 pm »



          ojo.           I took nortryptiline for a while, stopped working. I didn’t know  Gabapentin  caused addiction but I’m glad that you’re taking something for your pain.

I’m sorry about your itchiness, I just have neuropathy in both of my legs, from Denise to my toes. Thankfully, I don’t have anything on my arms or hands.

I’m sorry about your blood pressure problems, I also take Metropolol 12.5 mg every night, and I don’t have any problems. nor I have BP issues, the cardiologist prescribed it after I got a stem put in.


According to my HIV specialist, hiv itself causes neuropathy specially if your VL was high…I stopped wearing leather shoes, that helps my pain and tingling sensation on my legs and feet and I do not cover my feet while in bed… I hope and you feel better specially the itchiness on your hair…hugs


Offline Jim

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Re: Doravirine (aka Pifeltro)
« Reply #4 on: December 29, 2024, 11:45:50 am »
(writing from my mobile phone in an airport waiting for my flight, so forgive the spelling mistakes and I'll provide reference tomorrow)

Essential you are just trading "BIC" for "DOR" as the other two drugs remain the same.
I'm with Tony on this, if it isn't broken don't change it and your current combination didn't cause the problem and is working perfectly fine as it's only job is suppressing the virus, nothing more. However, that said, it's your treatment and you are the pilot, so do as you wish.

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Offline Brian1966

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Re: Doravirine (aka Pifeltro)
« Reply #5 on: December 29, 2024, 01:20:47 pm »
I never had any neuropathy in my feet before my hospitalization.  It is no better or worse in the time since I got out of the hospital and home for continued recovery. My feet would be really sore every day at the end of the day and I didn’t want to add another drug to the list so I got a pair of recovery sandals from Oofos that have helped with the foot pain although the neuropathy remains a constant and it’s better some days than others.  I have also started walking around bare foot in the house more frequently as I read it’s a good way to get better blood circulation in the feet because we wear shoes all day… not sure if it’s a real thing or not but it seems to help my feet feel a little better overall.

I don’t know if that helps at all but it’s what I do for my feet after a long day on my feet.

Offline leatherman

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Re: Doravirine (aka Pifeltro)
« Reply #6 on: December 29, 2024, 06:25:48 pm »
I didn’t know  Gabapentin  caused addiction
I didn't know that either. And I'm not really certain how much of an addiction it is. I mention that because what I researched says "Withdrawal symptoms can begin within 12 hours to 7 days after quitting the medication and last up to 10 days. Symptoms of gabapentin withdrawal may include nausea, dizziness, headaches, insomnia, and anxiety. The safest way to stop using gabapentin is to taper off the medication under the supervision of a doctor." That sounds like stopping any other mild addiction. Any one who regularly drinks Coke or coffee has similar temporary issues when stopping.

That said, I've taken gabapentin (it made me fuzzy headed and didn't stop the burning sensation in my feet) but I quit it after a couple of months. My husband has taken it a while for some mild neuropathy and sciatica nerve pain with medium success. Just recently we tried gabapentin for a month on my older dog (no success) and then switched to Librela (a monthly monoclonal antibody for dogs. Yea! Science!). My mom and the older one of her two dogs use gabapentin for their issues.


My feet would be really sore every day
since 1994 (after AZT) my feet feel like I'm walking in burning hot sand. Not enough to make me jump around but enough that the feeling is always there. After trying several meds, I just live with the issue nowadays. ;) :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline Tonny2

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Re: Doravirine (aka Pifeltro)
« Reply #7 on: December 30, 2024, 05:13:19 pm »




            ojo.         @leTherman, speaking of burning feet, the ID doctor recently mended a cream made of “hot pepper”, 🌶️ don’t recall the name, I put it on before I went through work and omg!, the worse thing I’ve done, my feet felt weird n fire, I felt lazy ke the emperor Aztec Cuauhtemoc when the Spanish conquistadors were torturing him asking where was his gold, they burnt his feet. I would’ve tried the name guy before because my feet were on fire and I couldn’t take my shoes off. Now it’s funny to remember that story back in the day I wanted to cry…lol…the cream was for my neuropathy pain


Ps. Sorry for the typos

Offline Bucklandbury

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Re: Doravirine (aka Pifeltro)
« Reply #8 on: December 30, 2024, 05:37:52 pm »
[...] the ID doctor recently mended a cream made of “hot pepper”, 🌶️ don’t recall the name, I put it on before I went through work and omg!, the worse thing I’ve done, my feet felt weird n fire [...] the cream was for my neuropathy pain

https://www.webmd.com/drugs/2/drug-4181/capsaicin-topical/details

Offline Tonny2

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  • Posts: 3,246
Re: Doravirine (aka Pifeltro)
« Reply #9 on: December 30, 2024, 06:00:51 pm »



               ojo.            ojo.                Thanks for the information, yes that was the cream. My doctor recommended back in the day around 1995 or 1996 when I started having pain due to neuropathy… Thanks again… as I said before, I have learned to live with the neuropathy, I don’t take anything for it… Hugs

Offline leatherman

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Re: Doravirine (aka Pifeltro)
« Reply #10 on: December 30, 2024, 07:14:32 pm »
the worse thing I’ve done, my feet felt weird n fire, I felt lazy ke the emperor Aztec Cuauhtemoc when the Spanish conquistadors were torturing him asking where was his gold, they burnt his feet
:o :o :o what a great reference/description!!!

the ID doctor recently mended a cream made of “hot pepper”, 🌶️
OMG I tried something like that before too and it burned like fire. And it doesn't just easily wash off either. Argh! And then my body has one of two ways it always reacts to stuff it doesn't like - with extreme vomiting or deadly rush-to-the hospital-within-20-mins-or-die allergic reaction with rash.

I have to watch a lot of OTC creams and food stuff so they don't contain aspirin or pineapple. Both of those things have given me a non-HIV/AIDS almost-dead experience and I certainly never want to repeat that crap. Oh! and both were allergic reactions that I "grew" into. At 16, aspirin nearly got me (tylenol only for me now!) and around 54, suddenly the delicious delicious pineapple almost killed me twice. Ugh! Adding in stupid AIDS PCP trying to kill me twice, I must point out that five almost-dead experiences is just too many and I have decided not to do that ever again. LOL ....I hope...... :)
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

 


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