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Author Topic: Diagnosed recently  (Read 8037 times)

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Offline Newlife050

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Diagnosed recently
« on: October 14, 2017, 04:46:39 am »
Hi everyone
I am a guy in my early 50s, living Europe, and I was diagnosed very recently on September 14. On August 17 I tested negative. On August 23 I took another blood test by my doctor. This test was reactive but the immune blot confirmation test was intermediate. My doctor told me to retest within 2/3 weeks time as it was possibly a very recent infection. But still at that moment I was classified as negative.
Before I retested, I got together with my boyfriend, I have him since more than a year and he lives abroad, to test for HIV and his test came out positive. The small piece of hope I still had was blown away. I had not been with others since I knew him so it was obvious that I was infected by him recently.
On September 14 I received the message that I was positive too.
So yes....since my false positive result it has been a rough ride. Kind of continuous surving. I did not miss any day from work, somehow it is a good distraction.
On October 9 I received my numbers: CD4 330, viral load 4700. Actually I don't know if these numbers are good are not, given my very recent infection. My doctor told me that the rest of the blood work looked very good. Negative for Hepatitis A, B and C. My liver and kidneys are working well.
On October 16 I have my next appointment in the hospital to discuss starting treatment asap. Then the results of the resistance tests will be there too.
I'm nervous about the side effects I will possibly experience and trying to find out the best moment to take my medicine and also to determine if I want to take it with or without food.
I read about Genvoya, and as it is the most recent medicine available, my feeling is that this medicine is developed with the most recent knowledge. But we will see next week. If you have any thoughts on this, I would appreciate if you could share your opinion.
I am happy I found this forum, to hear from companions their experiences and knowledge and share mine now and in the future.
I the meantime...take care!
Alex



 

Offline Jim Allen

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Re: Diagnosed recently
« Reply #1 on: October 14, 2017, 05:13:28 am »
Welcome to the forum, sorry to hear you tested positive but good that you are working on getting onto treatment.

Quote
On October 9 I received my numbers: CD4 330, viral load 4700. Actually I don't know if these numbers are good are not, given my very recent infection.

Well the good thing is once you start treatment the medication will start suppressing the virus, meaning your body can focus on better things instead of a slow loosing battle.

As for the CD4's well try not to focus on them too much, its a snapshot moment and there is not much you can do about them, I will say that with 330 its at least about the 200c count, we know statistically being below 200 carriers increased risks. Anyhow try not to focus on numbers too much they don't tell the full story.

Quote
I read about Genvoya, and as it is the most recent medicine available, my feeling is that this medicine is developed with the most recent knowledge.

Whatever modern meds you are offered, other than a few days/weeks of settling in as the body adjusts you simply should not be anticipating any day to day side effects.  Its that simple really.

Take it easy

Jim


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https://www.poz.com/basics/hiv-basics
« Last Edit: October 14, 2017, 05:38:03 am by JimDublin »
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Offline LeftyBowler300

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Re: Diagnosed recently
« Reply #2 on: October 14, 2017, 10:11:52 am »
Hello,

Your numbers are better than most at diagnosis, including mine.

Genvoya doesn’t give me any trouble. I take it during lunch at work. (Always take it with food)

It’s the prophylaxis that give me trouble, which you don’t have to worry about with 300+ CD4’s  ;D

Take it easy

Apr 1, 2017 DX - CD4 8 , VL 820,000
OI's: Disseminated Histoplasmosis, Thrush, PCP
Apr 17, 2017 started Genvoya, Bactrim, Sporanox, Azitrhomycin
Jun 9, 2017 - CD4 42 (3%) , VL 100
Jul 17, 2017 - CD4 57 (4%) , VL 53
Sep 16, 2017 - CD4 57 (4%) , VL 130 - Ugh..
Oct 20, 2017 - CD4 63 (5%) , VL 100
Dec 1, 2017 - CD4 56 (3%) , VL <20
Mar 15, 2018 - CD4 73 (5%) , VL <20
Nov 5, 2018 - CD4 104 (7%), UD
Jan 26, 2019 diagnosed with HIV-associated DLBCL (lympoma) with 6cm mass near liver w/ abdominal fatty tissue involvement
6 rounds of RR-EPOCH
2 rounds of high dose methotrexate
(8 rounds of IV chemo total)
11 Lumbar punctures with intrathecal chemo
June 5, 2019 - Complete Response/Remission
Feb 20, 2020 - CD4 187, VL UD
Aug 2020 - CD4 247, VL UD
Stopped all prophylaxis
June 2021 - 2 years remission

Offline Newlife050

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Re: Diagnosed recently
« Reply #3 on: October 15, 2017, 04:09:28 am »
Thanks Jim and Lefty for your response. @Jim I hope it is really that simple as you describe. @Lefty...take care!

Offline Newlife050

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Re: Diagnosed recently
« Reply #4 on: October 15, 2017, 05:15:10 am »
Hi all, regarding 'taking food' with certain HIV medicine, I was wondering what that means in pratice? Is it meant like taking a lot of food like a complete meal (e.g. breakfast, lunch?) or is a small sandwich or a snack also possible?
And do I need in that case to exclude certain foods? For example milk products? I am used to eat oats with fruits and yogurt with breakfast. Wondering if that is enough and the right food in case I am going to take the medicine in the morning.
Your advise is much appreciated :)
Alex
 

Offline Jim Allen

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Re: Diagnosed recently
« Reply #5 on: October 15, 2017, 05:27:34 am »
Quote
@Jim I hope it is really that simple as you describe
Its even simpler but most people just overthink it. 

Quote
exclude certain foods?

Depends on what mediation you will be getting, but lets presume you have no resistance or hypersensitivity and Genvoya is an option.

Well when they say food its more than a slice of toast, its a meal. Breakfast, Lunch, Dinner but when you get the medication you should also be walked through the requirements.

As for foods to avoid, you should be fine no need to avoid milk, however over the counter supplements, herbs and medication you should check first with your pharmacists/doctor. Example St. John’s wort is a big no no!

Jim

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Offline Newlife050

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Re: Diagnosed recently
« Reply #6 on: October 16, 2017, 09:19:10 am »
Thanks Jim, your response is much appreciated :). Today I went to the hospital to discuss the medication. A week ago they took blood to check for gene variation HLA-B*5701, as my doc is planning to put me on Trumeq. This is needed because of the Abacavir which may cause strong allergic reaction in case I have this gene variation. But the lab lost my blood sample  >:( so no result there this morning. So again they took blood and with an urgent procedure i will know by Wednesday if i can start with Trumeq. Bit nervous about possible side effects, but that is with every option. Hope I m lucky.
I keep you posted.
Alex

Offline Jim Allen

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Re: Diagnosed recently
« Reply #7 on: October 16, 2017, 09:47:16 am »
Trumeq, cool.

Sorry to hear they lost the blood sample, I know its not a big deal normally but when you are waiting for results it add to the stress.

I'm taking Trumeq, look you should not be anticipating problems. My only personal anecdotal tips are take it in the morning if possible and for the first few weeks as you and your body adjusts to it eat daily some probiotic yogurt (Lactobacillus acidophilus cultures) and don't overthink it.

Jim
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Offline filopoz

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Re: Diagnosed recently
« Reply #8 on: October 16, 2017, 08:20:28 pm »
I am in the same situation as you last Aug 29 when I was diagnosed and started taking Genvoya. But after taking my first nothing extraordinary happen. The effect although makes me sleepy after 1.5-2 hours and loose stool but not diarrhea. So I reschedule my medication at night time and take some probiotic supplement which solves the later.

Offline PittGurl

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Re: Diagnosed recently
« Reply #9 on: October 17, 2017, 07:34:40 pm »
Alex - my story is somewhat like yours...i had a indeterminate also and had so much hope that it was not true....neither partner are still telling me their results....well somewhat ...its a long story...in any case...you should read my post from Day 1 2 years ago.. i keep my string going with updates and also did the gene testing for Triumeq....still on it 2 years later....
Infected ~5/16/15-7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Pos Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq….
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 mo on Triumeq
4-27-16    CD4=580; VL=UD; 32%
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/18   CD4=893; VL=UD; 39%
8/9/18   CD4=858; VL=UD; 41%
12/27/18   CD4=841; VL=UD; 41%
4/24/19   CD4=751; VL=UD; 39%
8/27/19   CD4=719; VL=UD; 36%
10/31/19   CD4=746; VL=UD; 37%

Offline Newlife050

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Re: Diagnosed recently
« Reply #10 on: October 19, 2017, 03:05:17 pm »
Just here to tell you that I started treatment with Triumeq this morning.
I took it at 7.15am and eat it with some probiotic yogurt as JimDublin advised (thanks Jim) and during the day until now I did not experience any notable side effect or so.
I had a slight headache but I already had it when waking up this morning.
At the end of the day, when I left work I had somehow the feeling that I felt better then all the days and weeks before. Perhaps imagination.....

I must say I felt a bit a hurdle to take the medicine, somehow an emotional moment. You realize that it is the first one and many more will follow :(
I have been reading PittGurl's posts and I also have been staring to the tablet in my hand for a while before putting it in my mouth.

So far so good...
Later I will update you more.
Alex
 
« Last Edit: October 19, 2017, 03:11:33 pm by Newlife050 »

Offline PittGurl

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Re: Diagnosed recently
« Reply #11 on: October 19, 2017, 09:02:34 pm »
LOL Good job Alex!  hahah Well you did better than I did...took me a few days. I hope my posts help...i go thru alot of ups and downs...still do...but medication wise...Triumeq has been great!  WAY TO GO! :)
Infected ~5/16/15-7/19/15
8-2-15    CD4=286; VL=43800; 15% WB Pos Test Confirmed (waiting for genotype to start Triumeq)
9-4-15    Started Triumeq thanks to the people on board encouraging me :)
9-21-15    CD4=570; VL 26; 30% 16 days on Triumeq….
10-27-15   CD4=522; VL=UNDETECTABLE!!!; 29%    7 wks, 4 days on Triumeq
1-28-16    CD4=479; VL=UD; 31% almost 5 mo on Triumeq
4-27-16    CD4=580; VL=UD; 32%
7-28-16    CD4=991; VL=UD; 38% almost 1 year on Triumeq
8-3-16    ONE YEAR DX
10-27-16    CD4=765; VL=UD; 39%
3-8-17   CD4=709; VL=27; 39%
7-13-17   CD4=942; VL=UD; 41%
10/12/17   CD4=626; VL=UD; 39%
1/21/18    CD4=650; VL=UD; 40%
4/26/18   CD4=893; VL=UD; 39%
8/9/18   CD4=858; VL=UD; 41%
12/27/18   CD4=841; VL=UD; 41%
4/24/19   CD4=751; VL=UD; 39%
8/27/19   CD4=719; VL=UD; 36%
10/31/19   CD4=746; VL=UD; 37%

Offline JosephP

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  • Keep looking FORWARD... Dx'd 8/10/2013...
Re: Diagnosed recently
« Reply #12 on: November 03, 2017, 09:56:27 pm »
I must say I felt a bit a hurdle to take the medicine, somehow an emotional moment. You realize that it is the first one and many more will follow :(

Indeed, Alex, is very emotional and intensely personal.I take Genvoya and have had no side effects!
Today January 20, 2020, I have taken 2378 pills of my ARV since first pill. This means 79 bottles of 30 pills of ARVs at an average of $3950 per bottle or $313,103 USD for my treatment. I have a compliance of 99.83% taking my meds and only .17% (or 4 pills) non-compliant. Of these four pills two I forgot completely, One I lost and one I didn't have with me while traveling! I became UD 3 months after treatment start   ***We are all dealing with this. And we will live long and productive lives!! AND, yes the Lord is my shepherd. Life is good... And thanks for the meds! ***

Offline Newlife050

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Re: Diagnosed recently
« Reply #13 on: November 27, 2017, 09:14:33 am »
Hi! This morning i had my appointment with my doctor at the hospital. Started with Triumeq on October 19. On November 20 they took a new blood sample. Today i received the outcome and I m very happy I reached undetectable in one month after starting treatment. Triumeq surely does its job. No CD4 check. That Will be done next appointment beginning of January.
The side effect which is the most annoying is my skin.especially spots on my inner arms. And a small rash in my face. Besides that I had some headaches, but manageable.
For my skin issues I will visit a dermatologist very soon and hopefully that will be solved soon.
Is anyone else struggling with skin issues while using Triumeq?

Offline Jim Allen

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Re: Diagnosed recently
« Reply #14 on: November 27, 2017, 11:29:40 am »
Question, are you taking the Truimeq with food? Reason i ask is I moved mine to take without food to reduce headaches.

Good luck with the rash, if the dermatologist can't find the cause/solution make sure to talk to your HIV specialist. If it is a mind reaction to the drugs you may want to consider a switch, no point in being itchy in life.

Jim     
HIV 101 - Everything you need to know
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Read more about Testing here:
HIV Testing
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