Welcome, Guest. Please login or register.
May 18, 2024, 06:24:40 pm

Login with username, password and session length


Members
Stats
  • Total Posts: 773526
  • Total Topics: 66381
  • Online Today: 343
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 1
Guests: 204
Total: 205

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Polyneuropathy, better without NRTIs ?  (Read 2781 times)

0 Members and 1 Guest are viewing this topic.

Offline ad2san

  • Member
  • Posts: 239
Polyneuropathy, better without NRTIs ?
« on: December 04, 2023, 12:13:09 pm »
I've been under medication since 2009, starting with TVD/ATV/r then ABC/3TC/ATV/r then ABC/3TC/NVP then ABC/3TC/RAL then BIC and now ODEFSEY (about 2 years).
My VL is under control from the beginning and CD4 around 800.

My problem at this time is polyneuropathy since 4 years (more or less when I started BIC) I have more and more pain in the legs, hips and now arm, Gabapentin did not help ... I almost cannot climb stairs and am only 60 ...

I was wondering if switching to Juluca or Cabenuva would not help (getting rid of NRTIs) could help ...

Any suggestion? Thanks
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,487
  • Threads: @jim16309
    • Social Media: Threads
Re: Polyneuropathy, better without NRTIs ?
« Reply #1 on: December 04, 2023, 03:06:31 pm »
I've been under medication since 2009, starting with TVD/ATV/r then ABC/3TC/ATV/r then ABC/3TC/NVP then ABC/3TC/RAL then BIC and now ODEFSEY (about 2 years).

I think you missed the Triumeq as well, right? (DTG, 3TC & ABC) BIC & ODEFSE, I would not re-exposure myself to anything with TAF/TDF; it works excellently for so many, but it's just not my cup of tea.

Quote
Gabapentin did not help ... I almost cannot climb stairs and am only 60 ...

Quote
I was wondering if switching to Juluca or Cabenuva would not help (getting rid of NRTIs) could help ...

I'm in my 40s and don't climb stairs, so I can somewhat relate, although it's different. I'm sorry to hear Gabapentin didn't help, and I hope things get better soon.  I'm on pregabalin myself, and it half helps against the pain and discomfort of my neuropathy.

But nothing will fix my issues; once the damage is done, it's usually done, and it just becomes a case of managing it. I should add that it somewhat depends on the root cause and the level of damage done; if it is HIV itself, then nothing is going to fix it. Anyhow, that's really a case-by-case thing, so it is something to discuss with your doctor.

Quote
I was wondering if switching to Juluca or Cabenuva would not help (getting rid of NRTIs) could help ...

I would doubt it; however, I'm not you, and it's certainly something to discuss with your HIV consultant and neurologist. Remember that you are the pilot, and it's your choice to try.

Juluca contains drugs you have already had, DTG and rilpivirine, and Cabenuva is Cabotegravir/rilpivirine.

Take it easy.






« Last Edit: December 04, 2023, 03:11:06 pm by Jim Allen »
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline ad2san

  • Member
  • Posts: 239
Re: Polyneuropathy, better without NRTIs ?
« Reply #2 on: December 05, 2023, 05:35:44 am »
thanks Jim.

Well, the HIV doc is also not sure suppressing NRTIs will be the game changer but as I can, she says its is worth the try. So I'll go juluca.

She is the opinion that those burden (neuropathy) are likely to increase with the age ... unfortunately.

The neurologist had me on Gabapentin (low dose) but it did not help (I did not increase the dosage much though ...). Maybe I'll check again. One thing at a time.
 
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

Offline Jim Allen

  • Administrator
  • Member
  • Posts: 22,487
  • Threads: @jim16309
    • Social Media: Threads
Re: Polyneuropathy, better without NRTIs ?
« Reply #3 on: December 05, 2023, 06:06:11 am »
Quote
the HIV doc is also not sure suppressing NRTIs will be the game changer but as I can, she says its is worth the try. So I'll go juluca.

Absolutely, it's your HIV care, so there is no harm in trying, and at least with Juluca, you know what you are getting, as you have been on those drugs before.

The neurologist had me on Gabapentin (low dose) but it did not help (I did not increase the dosage much though ...). Maybe I'll check again. One thing at a time.

Yeah, it's trial and error with these things. What works for some will not work for others. Increasing the dosage is possible, but if it's not helping, you could consider other treatment (management) options as well.

Pregabalin somewhat works at 300mg (2x 150 mg) a day somewhat works for me, at least it takes the edge off the discomfort and allows me to focus on living.

Anyhow, best of luck, and keep us posted.
HIV 101 - Everything you need to know
HIV 101
Read more about Testing here:
HIV Testing
Read about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read about HIV prevention here:
HIV prevention
Read about PEP and PrEP here
PEP and PrEP

My Instagram
Threads

Offline Tonny2

  • Member
  • Posts: 3,002
Re: Polyneuropathy, better without NRTIs ?
« Reply #4 on: December 05, 2023, 12:05:26 pm »



             Ojo.            Hi there!!… unfortunately, in my case, dealing with neuropathy since 1997 it hasn’t gotten better. On the contrary, it’s worse. Drop foot and drop toe which it’s painful and problems with balance … talk to your doctor… good luck, and please keep us posted

Offline Tonny2

  • Member
  • Posts: 3,002
Re: Polyneuropathy, better without NRTIs ?
« Reply #5 on: December 06, 2023, 01:22:16 pm »


        ojo.          Hello there!… anyone with drop foot due to neuropathy?

Offline Tonny2

  • Member
  • Posts: 3,002
Re: Polyneuropathy, better without NRTIs ?
« Reply #6 on: December 06, 2023, 06:27:34 pm »



          Ojo                   Hi there!

https://youtu.be/YTZpB6FTAYI?si=hHILqAeKkIVJqAz5



Offline ad2san

  • Member
  • Posts: 239
Re: Polyneuropathy, better without NRTIs ?
« Reply #7 on: April 28, 2024, 10:53:26 am »
So short update about new treatment (Juluca) since December. It works quite well, no side effects at all, very small pill ... weight stable (slight decrease in fact .. despite Xmas  ::) )
No effect on Neuropathy, still a burden, together with my knee arthrosis that's killing me ...
Julia very recommendable though

Cheers
Feb   2009 CD4 358 VL 2000 16%
May  2009 CD4 305 VL 3069  14% <---- Started TVD+ATZ/r
Jul  2009 CD4 512 VL <50   18%
Jul 2010 CD4 418 VL <50 24%                     
Switched to Kivexa (Epzicom) + Norvir + Reyataz (due to sleep problem)
Aug 2010 CD4 606 VL <50 25%
Jul 2011 CD4 494 UD 23%
Switched to Kivexa (Epzicom) + Viramune XR (due to kidney problems)
January 2012 CD4 564 UD 31%
January 2013 CD4 594 UD 26%
Switched to Kivexa (Epzicom) + Isentress due to BIG increase GammaGT
Feb 2013 CD4 699 UD 28%
Aug 2014 CD4 639 UD 25%
Switched January 2015 to Triumeq
May 2015 CD4 807 UD 31%
Switched Nov 2016 to Genvoya due to gastric problems
November 2016 CD4 847 UD 32%

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.