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Author Topic: One week in ...  (Read 10410 times)

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Offline kiwiman

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One week in ...
« on: April 02, 2017, 01:27:45 am »
So ... I am a healthy and busy 45 year old guy.  Tested positive in Thailand last week ... CD4 of 20 and VL 337,000.

Started that day on Stribild, Bactrim and Zithromax, so now 1 week in.   A rocky few days in terms of side effects, but they seem to have passed.   Can't sleep much, but I think it's more mental than physical. 

I have two concerns for your opinions ...

(1) I am losing a bit of weight.   Not drastic ... but it is certainly not normal for me.   Is that going to reverse?   Should I be worried?

(2) I feel well ... but also like I am just waiting to get sick.   Obviously the antibiotics are designed to prevent this ... but I would love to hear your experience re OI's WHEN you are on prophylaxis.   Do they fail???  Clearly my rock bottom CD4 is what is causing me to feel a bit anxious about this topic. 

Thanks guys for a great forum ... reading your stories (mostly!) makes me feel better about this "situation".

Cheers!

Offline Almost2late

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Re: One week in ...
« Reply #1 on: April 02, 2017, 03:36:28 am »
Hi Kiwiman, and welcome..
Yeah that's a low cd4 but you are going to do better now that you are on the meds.. I also started with low cd4 of 13 three years ago..

I lost lots of weight but once on meds I regained my weight back and then some, so try and eat healthy like yogart, fruits and vegies.. if you get hungry eat more healthy stuff, I'm sure you'll get your weight back as the meds do there thing.

If you haven't gotten an OI and your on the batrim and other propho's, the arv should kick hiv's ass and give your immune system a chance to recover so it could fend for its self.. You're doing better than I had bc I had Pcp and KS when I got my diagnoses in the ER.. So very good chance you won't get an OI if you're taking your meds..

I think your going to do fine, remember you're in better shape today then you were two weeks ago.. Lots of luck dude.

Btw, sorry about your diagnoses but it does get better..
Cheers
« Last Edit: April 02, 2017, 03:41:44 am by Almost2late »

Offline Jim Allen

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Re: One week in ...
« Reply #2 on: April 02, 2017, 04:28:26 am »
Hi

Welcome to the forum, sorry to hear about the diagnosis, but glad that you have started treatment.

I am sure you will be feeling a lot less anxious and much better soon, just give it a few months and you will be off the antibiotics and also had time to settle and get your head around the diagnosis. As for the weight loss this could be caused any number of things, from the antibiotic side effects, lack of sleep, to the stress etc etc etc. I would try not to stress about it, but if it does get concerning than report it.

Glad that you are overall feeling well and working on remaining that way by starting treatment. As for OI's well truth is nobody can guarantee that you don't have or never will develop an OI however you should not be stressing out about this.

Some OI's can occur at any time, regardless of CD4 cell counts, however statistically speaking when the CD4-cell count goes below 200, there is an increased risk of certain opportunistic infections, and when the CD4-cell count drops below 50, the risk rises dramatically. So its good that you are getting the antibiotics to reduce the risk & to protect you as you start HIV treatment that will start to suppress the virus.

Again not need panic or stress, there are plenty of us that started with lower counts than yours. I know its hurts you head thinking about this at the moment but that will settle and in the long run other than taking your meds and going for check-up from time to time life goes on. Expect to have to work, pay your bills, pay the rent, fall in love, etc etc.  Simply put life with HIV goes on as normal, Just take your meds and be adherent to the medication.

Take it easy.

Jim

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Offline terrymoore

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Re: One week in ...
« Reply #3 on: April 15, 2017, 02:17:39 pm »
Hi kiwiman,
sorry about your DX. It is good that you are on meds and soon your VL will drop and your CD4 will slowly get better. You are also lucky you found this sight - it is a well of knowledge and great for support.
I too live in Thailand. Luckily there are a number of medical care options. I wonder, where are you being treated? I was surprised to read that they have you on Stribild - it was not around when i started treatment. Are you buying your meds at the Red Cross?
Feel free to pm for any questions or advice.
Get well and Cheers!

Offline Tonny2

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Re: One week in ...
« Reply #4 on: April 15, 2017, 03:42:39 pm »


        OJO        HELLO KIWIMAN...I WAS DIAGNOSED 22 YEARS AGO WITH THE SAME CD4=20...I WONDER WHAT MADE YOU GET TESTED FOR HIV, WERE YOU SICK?...IF YOU KEEP LOSING WEIGHT, LET YOUR DOCTOR KNOW...HAVING PROPHILAXYS DOESN'T GARANTEE GETTING AN OI (IN MY CASE), BUT REDUCES THE RISK THO...I'M GLAD YOU ARE ON STRIBID, YOUR VIRUS WILL GO DOWN...WATCH WHAT YOU EAT AND WHERE YOU EAT, TO AVOID A STOMACH BUG, WASH YOUR HANDS BEFORE EATING, IT HELPS...WISHING YOU THE BEST, PLEASE KEEP US POSTED...HUGS     OJO

Offline paintedroom

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Re: One week in ...
« Reply #5 on: April 15, 2017, 03:49:05 pm »
Hi Kiwiman,i was diagnosed in july last year with similar numbers to your own(cd4 50) and am on Genvoya(modern version of stribild) and bactrim.I also had 2 kaposi sarcoma,one on my neck and the other on the back of my calf.
Apart from the initial freakout(understatement) on a technical diagnosis of Aids,i was in pretty good nick.I had lost a lot of weight but i thought that was due to a job at the time,very physical and 10 hours per day.Since then i`ve had no sides with the meds other than a fairly typical bactrim rash which is now gone.The kaposi sarcoma on my neck is completely gone and the one on the back of my leg is fading by the week.8 months in and my cd4 are slowly rising(193 although i`m told that may have something to with my age - 51).
We are told not to invest too much time and worry in thinking about the Cd4 numbers..we do.You will be told again and again that the most important thing is that your VL is undetectable - i was in a month and my numbers were not much less than your own.You will see here that many people are undetectable in a month.The Meds are nothing short of miraculous so rest assured they are like demented pacman chasing down and gobbling all the bad guys.. and absolutely will not stop.

As was said to me here by many of the really lovely members -you will be fine and will live and long and healthy life.All you can do is eat well,exercise and take care of yourself.

Keep us informed and best of luck,P.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline kiwiman

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Re: One week in ...
« Reply #6 on: April 17, 2017, 05:06:44 am »
Hey guys ....

Thanks SO MUCH for your comments and advice.   You have no idea how this contributes to my mental health!

Now almost one month in ...

Weight loss stopped and is being reversed by my healthy appetite.   I think it was more shock and dismay than anything else. 

Side effects from the medication were adding to my distress for those first few weeks ... mostly inability to get a good night sleep, sweating, feeling generally awful ... but all seems more or less ok.   I feel normal ... haven't had a day off work.  Still seem to have trouble sleeping through the night, but it gets better every day.

My eyelid swelled up one day last week ... but the eye doctor prescribed augmentin and it all disappeared in a few days.  Still no idea if this was an OI or a random insect bite or whatever ...

Speaking of insect bites, my body reacts really badly to being bitten.  To whomever asked what sent me to get an HIV test in the first place, this (swelling, slow healing bite wounds), along with night sweating, was starting to get my suspicions up.  Plus ... I am a gay man living in Asia ... probably in a high risk group ... hence the test.  And thank goodness I did!

To terrymoore ... I am being treated at Bumrungrad.   The Doc recommended stribild, and everything I read seemed to make it a good recommendation.   I have only had one prescription, and it came from the hospital pharmacy.  I hope they have it in stock for the next 40 years or so :))

Barring any changes in my health and progress, I am not going back for tests until 20 May (2 months in ...), so will keep you posted.   

Cheers




Offline Jim Allen

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Re: One week in ...
« Reply #7 on: April 17, 2017, 05:13:22 am »
Hi

Glad to hear you are doing well and all is settling in well in regards to the treatment.
As for the eye lid infection, can happen to anyone try not to overthink this.

Take it easy.

Jim
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Offline terrymoore

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Re: One week in ...
« Reply #8 on: April 17, 2017, 01:04:43 pm »
Kiwiman, great news! I too go to Bumrungrad - Dr. Anuwat. He is really great. He put me on Complera (well, the generic 2 pill version) and it has worked well.
I buy my meds at the Thai Red Cross Anonymous Clinic (TCRAC). The price is a fifth of the price at Bumrungrad (not sure about Stribild`s price in Bumrungrad, but it costs 5,460 THB/30 tablet bottle at the TRCAC), and you can get original or generic too.
As well, i get my blood tests done there (VL, CD4 and CBC) and bring the results to the doc - much much cheaper. As my doc says, this is a long term treatment and these things can add up, so best we save if we can.

Price list and schedule for clinic services can be found here: http://en.trcarc.org/Homepage/?page_id=632

Price list for meds can be found here: http://www.adamslove.org/en-d.php?id=73

Good luck!


Offline kiwiman

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Re: One week in ...
« Reply #9 on: May 23, 2017, 10:26:28 am »
Howdy gang ... quick update!

Went for my 2nd doctor visit (2 months in) this week.  I'm feeling great and seem to have gotten over all the side effects so far.   Blood test showed all critical functions are still in order so Doc was happy. 

I was expecting a CD4 and VL count, but he didn't do one.  The Doc said "all I'm worried about now is your tolerance of the medicine ... no point to test now since the treatment won't change ... if good, the same ... if bad, the same ... all looks good so keep taking the medicine, stay healthy, and see you in 4 months!"

I have to say it sort of makes sense to me ... so I'll take his advice!

Until then, a new supply of stribild, bactrim and Zithromax. 



Offline Tonny2

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Re: One week in ...
« Reply #10 on: May 23, 2017, 04:24:48 pm »


         OJO        HELLO KIWI....I'M GLAD YOU ARE FEELING BETTER. I GUESS YOU HAVE TO WAIT FOUR MORE MONTHS, I GUESS THIS IS BECAUSE YOU ARE IN THAILAND, USUALLY, YOU WOULD HAVE BEEN CHECKED FOR CD4 AND VL AFTER THREE MONTHS, WELL, THAT WAS MY EXPERIENCE, ALTHOUGH, I'M TALKING ABOUT 22 YEARS AGO, I ALSO WAS DX WITH A CD4=20, QITH PCP...TWO QUESTIONS...ARE YOU STILL LOSING WEIGHT?...GOW MUCH ZITROMAX ARE YOU TAKING?...BEST OF LUCK AND KEEP US POSTED...HUGS                                                               OJO

Offline daveR

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Re: One week in ...
« Reply #11 on: May 23, 2017, 07:49:56 pm »
I was diagnosed in Thailand also. I was given a 6 months appointment after initial diagnosis. I went back after 3 months and they said it was to early. They did take blood at my request. It does seem to be the way over here. They appear to rely on the fact that the meds work so well now a days. So far I have no problems.

Offline kiwiman

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Re: One week in ...
« Reply #12 on: May 24, 2017, 01:44:03 am »
Oh I should have mentioned ... that weight loss stopped and I regained my missing kilos.   I think it was stress, and McMuffins for breakfast that turned it around :), so it was a relief.  I am back at my old normal (slightly over) weight!  Back to the gym starting yesterday for a nice 5k run. 

The Zithromax is a weekly one time 5 pill dose.  Quite a hit that causes a little bit of squeamishness, but not really a problem.   The Bactrim is two pills a day. 

Offline Jim Allen

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Re: One week in ...
« Reply #13 on: May 24, 2017, 03:59:32 am »
Glad to hear you are doing fine and good luck with the gym.

Jim
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Offline Tonny2

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Re: One week in ...
« Reply #14 on: May 24, 2017, 09:39:37 pm »
Oh I should have mentioned ... that weight loss stopped and I regained my missing kilos.   I think it was stress, and McMuffins for breakfast that turned it around :), so it was a relief.  I am back at my old normal (slightly over) weight!  Back to the gym starting yesterday for a nice 5k run. 

The Zithromax is a weekly one time 5 pill dose.  Quite a hit that causes a little bit of squeamishness, but not really a problem.   The Bactrim is two pills a day.

       OJO       HI AGAIN...THANKS FOR RESPONDING...AS SOON AS YOU GET UD AND YOUR CD4 ABOVE 200, YOU WILL GET RID OF THE ANTIBIOTICS...STAY AWAY FROM THE SUN...KEEP US POSTED...CYBER HUG  OJO

Offline kiwiman

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Re: One week in ...
« Reply #15 on: September 09, 2017, 03:57:11 am »
Hey gang ... so it's 6 months since I started this thread, with a VL of 337,000 and. CD4 of 20 ... heady times!

I went back for my second set of tests this week, and very happy to report that my VL is now 69 ... (no zeroes missing!) ... and my CD4 is 90. 

Clearly the stribild is doing its thing, and I'm not off the hook on either the Bactrim or Zithromax just yet ... but fingers crossed, I am heading in the RIGHT direction.

Do I graduate from the "just tested poz" forum at the six months mark???   I guess it's all relative ... anyway ... just wanted to give you all the great news. 

Offline Tonny2

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Re: One week in ...
« Reply #16 on: September 09, 2017, 10:57:16 pm »

     ojo.    Congratulations, you are on your way to a happier life. It is always nice to hear good news from a member who had low  cd4... Just keep doing what you have been doing... Discipline and a good attitude.    ojo

Offline paintedroom

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Re: One week in ...
« Reply #17 on: September 10, 2017, 03:40:17 am »
Happy days kiwiman :)

You have the bastad pinned down,hands up,squiirming in surrender,cornered and waving a white flag.

it only gets better from here,P.
Dx`d mid July 2016
8/8/2016 - CD4 50     VL 50,000
5/9/2016 -  CD4 150
13/9/2016  VL  undetectable.
March `17 - CD4 193   VL undetectable.
March  `18 CD4 214    VL undetectable
March 2019 CD4 325  VL UD
Genvoya - Changed to Biktarvy feb 2021

Offline kiwiman

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Re: One week in ...
« Reply #18 on: December 28, 2017, 10:34:10 pm »
Update ... 9 months or so in and just in for checkup.

VL slight bounce to 130 ... up a bit on last time.  Was hoping for “undetectable”but that’s for next time!

Great news ... CD4 now 232!!!   No more Bactrim, Zithromax, etc etc.  Better than I dared dream.  I’m even allowed a flu shot today!

Offline Ptrk3

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Re: One week in ...
« Reply #19 on: December 28, 2017, 10:56:42 pm »
Congratulations!  You are doing fine.  Your viral load is, essentially, undetectable, if calculated several just a few years back, and your CD4's are have risen above 200 (which is why you have stopped the prophylactics).

In other words, your CD4's would not be rising if your viral load was causing a problem (CD4's rise when the viral load is reduced enough that CD4's recover).

Keep up the good work!





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Offline JosephP

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Re: One week in ...
« Reply #20 on: December 28, 2017, 11:12:53 pm »
 :) :) Congratulations! You are clearly on your way up!! Keep up the good work!!!
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 harleymc

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Re: One week in ...
« Reply #21 on: December 30, 2017, 07:39:21 am »
Noice!

Offline Wade

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Re: One week in ...
« Reply #22 on: December 30, 2017, 08:03:15 am »


Good job kiwi, keep up the good work in 2018 :)

Best,
Wade
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Offline lightalltheway

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Re: One week in ...
« Reply #23 on: December 30, 2017, 09:19:26 am »
A critical advice: A better understanding of your CD4 pattern is by looking at several repetitive tests over a certain period of time as results can vary greatly, and also, affected by several conditions such as stress and time. I would suggest that you may ask your doctor if you can wait for your another CD4 test results to confirm that you no longer need the antibiotics because of the mentioned reasons.

Happy that you are feeling well and prayers to remain so.

Prince

 


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