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Author Topic: Regimen choice and start  (Read 1136 times)

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Offline muchtolearn

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  • Posts: 4
Regimen choice and start
« on: September 14, 2018, 03:08:43 pm »
Hi all,
I was diagnosed 8 days ago. CD4 is 170 and viral load 200,000. I'm a bit numb about the meaning of it all so my questions for now are more practical.

Three questions:
1) How urgent to start? A govt clinic wanted to start me straight away (7d ago, before I got the CD4 result) but also wanted to repeat all the tests, which sounded too expensive. My private doctor today wanted to get the resistance results first, even though I was told you are meant to start regardless. Is another week of waiting a big problem (other than mentally)?

2) How to choose a regimen? The govt dr recommended Descovy (TAF FTC) plus Tivicay (DTG). The private dr recommended Genvoya (ELV/c FTC TAF). Though Genvoya is one pill vs the other would be two, that doesn't particularly bother me - I want the best regimen with least side effects. My impression was that DTG was better than ELV/c but it's confusing - any opinions?

3) Myalgia (muscle pain). This along with chronic sinus infections was my hint that something was wrong. I've had both for over a year. Sinus infections have been treated successfully (just now) with Bactrim+Cefdinir. The private dr seems unconvinced that the pain is related to HIV but I see online that it seems to be a thing for many people with HIV. Does this get better with antiretroviral drugs? Or do I need to find a way to cope with it long-term? It is quite challenging to work and sleep with the current pain level. I'm using advil and will add Aleve to get through the night.

Thanks so much for any thoughts.



CD4 at diagnosis Aug 2018 = 170
VL at diagnosis Aug 2018: 201,000
Began treatment (Descovy + Tivicay) Aug 2018
Current labs (Dec 2018): CD4=558, 17%, VL=<20
Current meds: Descovy + Tivicay

Offline Ptrk3

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Re: Regimen choice and start
« Reply #1 on: September 14, 2018, 03:35:29 pm »
I'm sorry to read of your diagnosis, but glad that you have found these forums for encouragement, enlightenment, and support.

You will be fine.

Generally speaking, experts today recommend beginning and antiretroviral regimen as quickly as practical, regardless of CD4 and viral load counts, but since your CD4 count is low and your viral load count high, it makes sense that you begin soon.

That said, there may be some genotyping tests needed before the appropriate regimen can be prescribed to you, which seems like what is going on (the wait for the resistance test).  Work with your team to get these things done as soon as practicable in order that you can begin as soon as practicable.

In the meantime, your healthcare provider may prescribe Bactrim (or the like), if it already has not been prescribed (or you are not already on it due to your sinus issues), to protect you from pneumocystis jiroveci pneumonia, an opportunistic infection to which people are more vulnerable when CD4's are below 200.

There are a number of viable and highly effective antiretroviral regimens today available.  One can be just as effective (good) as another, though some regimens may be more individually appropriate (hence, the resistance test, etc.).

At the appropriate time, you can discuss what is the best regimen for you, but there is no one best regimen for everyone.

I can't predict the future of your muscle pain, but once you are on an appropriate antiretroviral regimen, your viral load will rapidly diminish to an undetectable level, which will allow your immune system to begin stronger:  you will then feel better.

Again, you will be fine.  You will live a long and healthy life, once you are prescribed and adhere to an appropriate antiretroviral regimen.

Please keep us informed of your progress and continue to use these forums as you begin your journey back to health.  There are many people here with years of wisdom and experience who are more than willing to give you the emotional and intellectual support you need to move forward.

Also, peruse these links to gain some useful information:

https://www.poz.com/basics/hiv-basics
« Last Edit: September 14, 2018, 03:40:47 pm by Ptrk3 »
HIV 101 - Basics
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You can read more about HIV prevention here:
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You can read more about PEP and PrEP here
PEP and PrEP

Offline JimDublin

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Re: Regimen choice and start
« Reply #2 on: September 14, 2018, 04:31:20 pm »
Welcome to the forum.

I agree with Ptrk and, don't have much to add.

I know that being newly diagnosed can feel very overwhelming at first but your not alone and, we have all been there.

Things do get better and, once you start treatment and suppress the virus your body can focus on healing instead of fighting a losing battle.

Take it easy

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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

Offline muchtolearn

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  • Posts: 4
Re: Regimen choice and start
« Reply #3 on: September 14, 2018, 07:28:02 pm »
Thank you both for your encouraging words. It is wonderful that you maintain this forum.
CD4 at diagnosis Aug 2018 = 170
VL at diagnosis Aug 2018: 201,000
Began treatment (Descovy + Tivicay) Aug 2018
Current labs (Dec 2018): CD4=558, 17%, VL=<20
Current meds: Descovy + Tivicay

Offline CreativeUserName

  • Member
  • Posts: 10
Re: Regimen choice and start
« Reply #4 on: September 14, 2018, 07:29:34 pm »
Hi, muchtolearn!
I was just diagnosed in February, and I remember the shock and numb feeling well. Reading and posting to these forums was a big help initially because it lessened my feelings of isolation and going through this alone. Although I am married, my husband is negative, so he doesn't understand the experience. He's very supportive, but this forum helped fill in the gaps.
I think it's wonderful that you're researching all of your options and what they mean so you can make an informed decision. I feel that educating myself played a big role in my treatment. Kudos to you for being proactive and taking charge!
I'm not a medical professional, nor am I as knowledgable as ptrk3 and JimDublin, but I think both of your doctors (as well as everyone here) want what's best for your successful treatment, so I would just listen to what they have to say, ask plenty of questions, and I'm confident you'll be put on the right track quickly. It can be overwhelming and maybe even scary at times, but the treatments available today are incredibly effective. Just take care of yourself and keep your head held high. It definitely gets better!
Good luck!! :)
2/13/18  diagnosis
2/16/18  CD4: 715/ VL: 251,000
3/8/18    started Atripla
4/19/18  VL: 440
5/21/18  CD4: 937/ VL: 180
8/28/18  CD4: 995/ VL: 30 (UD)

Offline CaveyUK

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Re: Regimen choice and start
« Reply #5 on: September 16, 2018, 12:26:43 pm »
Hi all,
I was diagnosed 8 days ago. CD4 is 170 and viral load 200,000. I'm a bit numb about the meaning of it all so my questions for now are more practical.

I was diagnosed a few years ago with very similar numbers (CD4 of 160). The numbness goes away eventually :)

Quote
1) How urgent to start? A govt clinic wanted to start me straight away (7d ago, before I got the CD4 result) but also wanted to repeat all the tests, which sounded too expensive. My private doctor today wanted to get the resistance results first, even though I was told you are meant to start regardless. Is another week of waiting a big problem (other than mentally)?

No, waiting a week isn't a big problem. The important thing is getting on some antibiotics to prevent any opportunistic infections until your CD4 level is safely over 200. That should be an easy thing for any doctor to sort you out with.

A week simply isn't going to make any difference in the big scheme of things, so just follow whichever advise you want to. The resistance result wait will give warning if you have any resistance to specific med classes, but if you started without them then the worst case is a med switch. I started my meds well before resistance tests came back.

Quote
2) How to choose a regimen? The govt dr recommended Descovy (TAF FTC) plus Tivicay (DTG). The private dr recommended Genvoya (ELV/c FTC TAF). Though Genvoya is one pill vs the other would be two, that doesn't particularly bother me - I want the best regimen with least side effects. My impression was that DTG was better than ELV/c but it's confusing - any opinions?

Personal opinion - I'd go with the Descovy/Tivicay but everyones situation is difference and what is important with me may not be important to you and vice versa. My view is that the Descovy regimen is an extra pill, but does not use a booster which means there are no hard-and-fast food requirements, plus there are fewer drug-drug interactions. The Genvoya regimen is a fine regimen in itself and many love it, but personally I think I'd always struggle with the food requirements in comparison. Your mileage may vary...


Quote
3) Myalgia (muscle pain). This along with chronic sinus infections was my hint that something was wrong. I've had both for over a year. Sinus infections have been treated successfully (just now) with Bactrim+Cefdinir. The private dr seems unconvinced that the pain is related to HIV but I see online that it seems to be a thing for many people with HIV. Does this get better with antiretroviral drugs? Or do I need to find a way to cope with it long-term? It is quite challenging to work and sleep with the current pain level. I'm using advil and will add Aleve to get through the night.

Some things will get better with HIV treatment, and some things will be unrelated to HIV and so won't and will need separate investigation. Muscle pain is not a 'thing' for people with HIV any more than a 'thing' for anyone with a chronic condition on medication, or even the population at large. My suggestion would be to get on your ARV regime, get UD and wait until your CD4s are well over 350 and then re-assess....if you are still experiencing any symptoms then get them checked out separately. With me a few irritating things cleared up with treatment, but some remain and I just have to cope with them as anyone would - nothing serious though thankfully!
HIV - Basics
HIV 101
You can read more about Transmission and Risks here:
HIV Transmission and Risks
You can read more about Testing here:
HIV Testing
You can read more about Treatment-as-Prevention (TasP) here:
HIV TasP
You can read more about HIV prevention here:
HIV prevention
You can read more about PEP and PrEP here:
PEP and PrEP

Offline Loa111

  • Member
  • Posts: 96
Re: Regimen choice and start
« Reply #6 on: September 17, 2018, 04:29:37 am »
Sorry to hear about your recent Dx. I'm fairly new too, Dx'ed in May. Things will get better as everyone else here says. It's a head wrecker to say the least, but that eases with time. I still think about it quite a bit but every month is a little better. Main thing is I do not let it effect my life. I was quite sick when I found out, very shocked to find out,  and after 3 1/2 months treatment, I am UD, feeling better, back at the gym, and my weight loss is recovering too. Focus on taking the med & stick to the regime strictly.

Offline muchtolearn

  • Member
  • Posts: 4
Re: Regimen choice and start
« Reply #7 on: October 21, 2018, 03:13:39 pm »
Thanks again for all the responses. I got my first on-treatment viral load result last week. After 28d treatment, I'm down 1,000-fold from 201,000 to 190 -- pretty impressive!

Muscle pain is still just as bad. CaveyUK, thanks for the advice -- this is exactly what my Dr also said, i.e., wait until I'm undetectable and CD4 is up, then see if it is still around. My creatine kinase level is normal so there is nothing obvious to see in the lab tests. There seem to be various muscle conditions associated with HIV but almost all seem to come along with elevated CK, so this remains a mystery.

Thanks again!
CD4 at diagnosis Aug 2018 = 170
VL at diagnosis Aug 2018: 201,000
Began treatment (Descovy + Tivicay) Aug 2018
Current labs (Dec 2018): CD4=558, 17%, VL=<20
Current meds: Descovy + Tivicay

Offline JimDublin

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Re: Regimen choice and start
« Reply #8 on: October 21, 2018, 03:32:53 pm »
Excellent results and glad to hear it

Jim
HIV 101 - Everything you need to know
HIV 101
Transmission and Risks:
HIV Transmission and Risks
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

 


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