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Author Topic: Introduction - Hello from the UK  (Read 726 times)

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Offline Planetary86

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  • Posts: 6
Introduction - Hello from the UK
« on: May 06, 2020, 09:02:15 am »
Hi all,

Just thought I'd introduce myself. I am 32 year old living with HIV. I got diagnosed just after 5 years ago.

My VL was 83,000 and CD4 350. Started on Triumeq, it wasn't approved for use in the NHS at that time but a few months after it was on the national formulary.

Had no problems from a HIV point of view since. Triumeq seems to be working well from a HIV point of view but might be looking to change it due to the neurocognitive/ mood altering side effects I might be having because of it.

I have a stable job, work hard, not playing very hard at the moment because of the coronavirus lockdown but I am a key worker so still working.

I don't have much experience personally from HIV because my care, medication and disease progression has been stable and never had any blips. That said, if anyone needs a chat or anyone has any questions regarding HIV care in the UK I'd be happy to try and help!

Cheers,
T

Offline Jim Allen

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Re: Introduction - Hello from the UK
« Reply #1 on: May 06, 2020, 09:17:26 am »
Hiya,

Welcome to the forum, glad to hear things are going well.

With regards to Triumeq, I love it, however, it's not everyone's cup of tea. In a small group of people, it may worsen depression and for some cause insomnia although that is less when taking the meds in the morning.

I would talk to your doctor next time you can, explain the issue, they can rule out any underlying concerns and if needed work out switching your ART combo and what combo would suit you.

Take it easy.

Best, Jim

https://www.poz.com/article/tivicay-component-triumeq-may-rare-severe-depression-side-effect

https://www.poz.com/article/morning-dosing-tivicay-may-ease-insomnia-side-effect
https://www.poz.com/article/tivicay-linked-greater-insomnia-compared-hiv-meds
« Last Edit: May 06, 2020, 09:25:07 am by Jim Allen »
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Offline Matths

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  • Posts: 29
Re: Introduction - Hello from the UK
« Reply #2 on: May 06, 2020, 10:30:04 am »
Hi, that’s great you are doing well. I started on triumeq as well and then switched to Dovato. I remember how I felt like some fog is lifting in my brain after a few days taking it. Thought at the time maybe I’m “dramatic” but now that you mention the cognitive issues it brought back that memory. Best of luck! Matths

Offline Planetary86

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  • Posts: 6
Re: Introduction - Hello from the UK
« Reply #3 on: May 06, 2020, 10:36:55 am »
Thanks Matths. My doctor believes that it's the dolutegravir that might be causing the NC problems especially worsening depression so Dovato would be out. (Plus not sure its available on the NHS in the UK). My pharmacist have suggested keeping the two main components of Triumeq (abacavir and lamivudine) + raltegravir. I'm not sure I want to change to a 3 pill regime after being on a single pill regime for so long!

Choices, choices

Offline CR2016

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  • Posts: 183
Re: Introduction - Hello from the UK
« Reply #4 on: May 06, 2020, 10:48:05 am »
Hi Planetary86. welcome to the forum, we are open to read and know about another experiences and help to someothers.
Great about your lab numbers, congratulations, you should talk about side effects to your Dr and talk about another alternatives of meds, maybe it could help for this without hit your actual numbers.
Continue sharing about your status please, and anything tou want to talk about, we are here.
regards from México.

Offline Matths

  • Member
  • Posts: 29
Re: Introduction - Hello from the UK
« Reply #5 on: May 06, 2020, 10:58:40 am »
Hi again, I read up on the “usual suspect” dolutegravir and therefore didn’t trust my own experience at the time. Maybe it was a random experience  but it occurred unexpectedly.

I hear you that you are reluctant to change from a single tablet to multiple tablets. Keep us posted on what you decide, best matths

Offline hiv_rizzy

  • Member
  • Posts: 139
  • Male. 28. Positive
Re: Introduction - Hello from the UK
« Reply #6 on: May 08, 2020, 02:23:06 am »
Hello! Hope you are doing well
Discovery! April 26, 2016
- Positive test confirmed by blood test
2016
-Viral load and CD4 unknown
-May 31st update - big delay at gov hosp lab
#July 9th late Results: CD4 16/ VL 13, 027
*Prescribed Atripla combo with Bactrim
#September CD4 97 / VL UD
2017
February CD4 137 / VL UD

Offline happy74

  • Member
  • Posts: 17
Re: Introduction - Hello from the UK
« Reply #7 on: May 08, 2020, 04:09:48 am »
Hi to all, I am newbie with on Triumeq for nearly 2 years since Oct,2018. I am also having some kinds of insomnia around 1-2 times in a week, anyhow, as I work in shift duty which needs overnight work. So I think it is normal as I also happened this before my positive status.  I take the meds at night after dinner, before sleep. I choose this habit as keeping me slow down daily activities after 10pm. If you have some kinds of sleeping disturbance, I recommend you can do some more exercise such as badminton, hiking at daytime, not in night time. It will help you consume your own energy and becoming better sleep.

 


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