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Author Topic: Started on meds today, one month after diagnosis. What was it like for you?  (Read 5514 times)

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Offline lincoln6echo

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Well, today I started on meds as a participant in the clinical trial I mentioned in another thread, a month and two days after diagnosis, 3 mo's after seroconversion.   

I was randomized on Kivexa (tested negative for the gene that doesn't react well to this med) and the clinical drug GSK1265744.  I was worried about being on the control arm which involved taking sustiva (prone to anxiety here) and when the doc walked in with the results of the selection he high fived me..it was a funny moment.  I really like my ID doc. 

When I got to the clinic I did a questionnaire with the clinical nurse, then had about 12 vials of blood taken, 3 ECG's (don't ask me why they do three..) then a physical with the doc, lots of discussion and questions.  Then the call into the autobot talking computer, answering questions about feelings of suicide. 

I had to fast due to the blood work so after that, they even bought breakfast and had it delivered!

It was all so busy doing one thing after the other I didn't even really have time to think about taking the meds.

But then it came and there they were on the desk. Three bottles of life saving chemicals that I will be married to for two years while on the study, then come what may in terms of meds afterward..for life.

"Ok so, here's your meds, go ahead and take them now".  It was pretty routine for the clinical nurse and I didn't really have time to think about it. So I opened the bottles, popped the seal and down they went. 

I left the clinic soon after feeling rather unfazed, the doc says, "see you in two weeks" as I walk out the door.  But it was while I was walking down the street having made it a few blocks..it all just kinda hit me and I started to cry. 

I know things will be ok, but I think it was just the significance of starting to take meds that have made the whole thing so real now.  There's not really any turning back.  It definitely was a significant moment in my life and the weird thing about it is none of my friends or my parents were there to witness it. They don't even know about it (a choice I have made for now to not disclose). It kinda felt like being alone in the universe. 

 I cried out of self pity wishing I didn't have to be dealing with this, but I think it was kind of a good cry in that I know I've taken a step to better health. 

I'm wondering what the reaction was like for you guys when you first started taking your meds?

Anyone else on Kivexa and what has that been like for you?

lincoln. 

Offline leatherman

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  • Google and HIV meds are Your Friends
One third of all people diagnosed with HIV are diagnosed in a hospital, usually with AIDS, and immediately go on to meds. For those people, there's no navel-gazing about "having" to take meds. Usually those people are just hoping to live long enough from whatever illness put them into the hospital so that the HIV meds have time to work. Sadly many people aren't able to hang on and die without the HAART being able to do anything. Happily, many more people survive, and then thrive thanks to HAART.

Around here, there are a bunch of us who were diagnosed when there weren't any meds. I tell you what, when you're watching all of your friends die off around you and you're sick and dying too, any meds are pretty damned good - even ones that wouldn't necessarily save your life (like AZT monotherapy or Zerit). Things have come a long way in barely 20 yrs with a lot of people saved by the drugs and now able to enjoy life because they are still alive.

I understand that you're facing up now to having HIV; but don't lay all your fears at the feet of the meds. Millions and millions of people take daily meds - and rarely give them a thought - especially not the kind of deep thought you're putting into the meds. I mean think of the difference of taking a few pills a day compared to having to test your blood and give yourself insulin shots 3 times a day to stay alive; or taking a few daily meds to having to drag an O2 tank around with you to have enough oxygen. (If you've ever had pneumonia, you know how much of a difference a little O2 can make.)

In part that's why the doctors and nurses seemed so unfazed to you about you. HIV is just one of thousands of deadly diseases and conditions that people live with everyday. Matter of fact with your health at present, you're no where near the sickest person with HIV that they've ever seen. At 3 months in, you may even be the healthiest person with HIV that they see right now in their practice.

And don't lay all your fears on just having HIV either. While HIV is still a very serious deadly disease, the medications have drastically changed the AIDS=DEATH meme to DRUGS=LIFE. You can't let HIV rule your life. What you have to do is, and I ask no pardon for this pun, is to live positively! Enjoy every day you have. Love your friends and family. Work and play hard. You have to do all that stuff to make sure that HIV doesnít take a moment away from you.

Donít let HIV take even 5 minutes away from you by crying about your situation. Your situation is not that bad. Youíre not dead, not sick, there are meds, and there is support out there. Goodness, youíre getting FREE meds without even having to live with untreated HIV for years until your cd4 drop to a near-AIDS level. Being treated this soon practically ensures that youíll remain healthier than probably 50% of all the other people living with HIV. Youíre already doing a lot better than 1/3 of people with HIV, as your condition was never bad enough to reach an AIDS level.

Please donít think though that I donít understand how unnerving it is to deal with having an HIV positive diagnosis. I was infected 27 yrs ago and on Dec 26 will celebrate the 20 yr anniversary of my AIDS/HIV diagnosis Ė not to mention that Iíve had two long-term partners die from AIDS. Being HIV positive is, at times, a miserable thing emotionally, mentally, and physically. However, as my motto has been for many years now, any day youíre not in a hospital is a GREAT day!

So now youíre on meds. Youíll take them daily Ė and like over 90% of most HAART users Ė experience little to no side effects. Youíll go on living your day-to-day life; but hopefully enjoying it more and trying to live it just a little bit more, understanding just how lucky you are to have been diagnosed with HIV in 2012,  having been diagnosed so early, and having the opportunity to get free treatment so quickly. Donít let HIV make this a sad day for you. Since without meds HIV becomes AIDS and AIDS leads to DEATH, let the meds you started taking today make this a much happier day for you as today is the day you started down the path of controlling HIV.

oh good lord! sorry for such a long post; but it seemed much better than saying "suck it up. quit crying. take your meds.get on with your life." ROFLMAO  ;) ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Cojo

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  • Posts: 189
Fantastic post Leatherman. As usual, you brought a tear to the eye!
May 2011 - Tested Positive
June 2011 - CD4 330   16%   VL182,000 no resistance
Oct 6, 2011 - CD4 300  20%  VL 60,000
Oct 7, 2011 - start Truvada / Isentress
Nov 29, 2011 CD4 280 26% VL 54
Feb 7 2012 CD4 260 25% UD!
Mar 20 2012 CD4 400 28%
June 2012 CD4 330 26% UD
Sept 2012 CD4 450 32% UD
Dec 2012 CD4 310 28% UD
May 2013 CD4 500 32% UD
Oct 2013 CD4 460 33% UD
May 2014 CD4 360 33% UD

Offline t3st_b3d

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  • Everyone has AIDS!
Hey lincoln6echo,

I just started on the same trial as you. Everything seems to be fine and dandy.  I felt a bit dizzy after I took the first dose, but I can't be certain that that was due to the medicine.

Take this fellow Leatherman's advice -- it's far from the end of the world, and nothing to cry over.  But if you want to cry, why not? sometimes embracing the drama can be cathartic, so long as you let it go and get on with your life after you finish up the drama.

Good luck with the trial - if I experience anything remarkable I'll post it back here, and we can compare notes.

Chin up!

Offline lincoln6echo

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Hey t3st, that's cool that you are doing the same trial. 

I'm on day 3 now and have a bit of dizziness as well but one other weird thing is that I get these minor feelings of warm spots, or a slight burning sensation on my right hand. It happens maybe 3 or 4 times throughout the day and started the day I first took the meds. 

My VL is super high, last count being 9 million so I'm feeling crappy all around and can't contribute everything to the meds.

Let's for sure keep in touch.

Good luck!
« Last Edit: October 06, 2012, 02:26:04 AM by lincoln6echo »

Offline lincoln6echo

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So, just out of curiosity, how long before I start feeling better?

Today I woke up with psoriasis on my face, red and scaly (I usually only get it on my scalp or behind the ears when it does flair up). 

I still have a pesky swollen and painful lymph node in my neck, feeling tired, hair still falling out, all that stuff.

it's only day 4 of meds but am curious when things might start to turn around. 

Offline buginme2

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Give it time.  It can take a little while to feel better.  Many times after starting meds you actually will start to feel worse before you feel better.  Skin conditions often flare up before settling down.  The lymph nodes...they can be a bit slower to get to normal.  I had swollen lyphm nodes come and go for months after I started meds (however I was infected for awhile before I started).

You do have a high viral load, but I beleive the med your on is an experimental integrase inhibitor (i think).  Integrase inhibitors tend to drop viral loads very quickly.  Youll be good!

Offline leatherman

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So, just out of curiosity, how long before I start feeling better?

it's only day 4 of meds but am curious when things might start to turn around.
while HAART is a miracle, it's not a miracle cure. At this point your body is becoming adjusted as the levels of the HAART medication is just beginning to stabilize in your system; while at the same time the HAART is kicking the heck out of that incredibly huge VL killing it off. Probably, as it is with many of the short term side effects that may happen, it may take several days to a couple of weeks for everything to settle down and for you to really begin to be feeling better

hang in there!!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline lincoln6echo

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Thanks for the boost of confidence guys, it helps  :D

I am doing my best to be patient.  I am grateful that I even have meds at all...it's just stressful and everything has happened all in a very short period of time along with already having been sick and off work etc due to something else unrelated.


Offline alberche

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  • a distancia del mundo incierto, saludo mi suerte
Dear L6E,

I also started meds very soon, 2 months after infection, in 2006. And I've been on meds ever since.

Leatherman's is a great post and that's the way things were and are now. Meds now are much better and will no interfere in your daily life beyond the fact of being consistent and disciplined in taking them as prescribed, respecting the most you can same hour every day; and, in a general sense, taking care of yourself, eating, sleeping and doing some exercise.

I am on Kivexa since 2010 and it is OK for me. No major complaints.

Things to talk to your doc and check periodically: bone density, STDs, some psychological aspects if you feel worried or with anxiety or a bit low, and any other symptom you may think as not normal or related to meds.

I also had that feeling of anything going so fast, too many things and decisions in too few days, still under the shock of assimilating an HIV diagnosis. It is very important to remember those days and the way you reacted to them, because that will give you a clue of how you manage yourself in difficult situations. It has been very useful for me, not only in things related to HIV, but also in other life situations in which I had to react organizing my ideas, prioritizing and making quick decisions.

With the passing of the time, all this, taking meds, going to the doc and labs etc, etc, will be a, let's say, normal part of your life, a thing you will be used to live with, After all, we are very fortunate.

Big hug! 8)


love is blindness...  a wonderful song!

Offline beyourhero

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #10 on: November 17, 2012, 07:06:10 PM »
Hi! I found out I have HIV on the 3rd October, started meds yesterday, (had a little cry too!) combination of TRUVADA and ISENTRESS, i also read that it effects bone density after long term use. Is there something one can take or do to help with OSTEOPENIA or OSTEOPOROSIS?
Thanks. xxxx

Offline emeraldize

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #11 on: November 17, 2012, 08:46:49 PM »
Started two years ago, had a teensy cry -- hey, I mean it, teensy. Might have sounded like a brief allergic reaction to life. But, it's been fine since.

See the movie How to Survive a Plague if it comes to your city (look it up online) and you'll realize the process whereby we became so lucky as to have the option to cry as we live longer rather than cry in advance of our death and over the deaths of lovers and friends.

We are fortunate beyond our ability to comprehend it. Just that much I know.

Offline Palliate

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #12 on: November 18, 2012, 02:22:21 PM »
Quote
However, as my motto has been for many years now, any day youíre not in a hospital is a GREAT day!


Leatherman, as another newbie, let me thank you for such an encouraging post. I like your motto, and I think I'm gonna steal it.  :)
Infected Spring 2012
Seroconverted probably in June 2012
POZ test 10/22/12
CD4 549 VL 171,000+ as of 11/09/12
Started Atripla 11/28/12

Offline lincoln6echo

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #13 on: November 19, 2012, 04:04:27 PM »
Started two years ago, had a teensy cry -- hey, I mean it, teensy. Might have sounded like a brief allergic reaction to life. But, it's been fine since.

See the movie How to Survive a Plague if it comes to your city (look it up online) and you'll realize the process whereby we became so lucky as to have the option to cry as we live longer rather than cry in advance of our death and over the deaths of lovers and friends.

We are fortunate beyond our ability to comprehend it. Just that much I know.

I haven't seen that movie as it's not out here yet.  Saw the trailer though and looks pretty cool. 
I did see, "we were here" though. Very intense.  You should check that one out as well. 


Offline emeraldize

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #14 on: November 19, 2012, 04:47:46 PM »
Hi Lincoln,

Yes, I did see 'We Were Here' and that was well worth seeing, too. And, yes, intense.

Plague is different in that regard and gives you an up-close view as to process, consensus, strategy, grit and determination and         collaboration.

Em

Offline bufguy

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  • Posts: 161
Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #15 on: November 20, 2012, 09:31:29 AM »
I was diagnosed May 2008...went through the confirmatory testing and 4 weeks later was on atripla. My doc started me despite my good numbers...CD4 511, Vl 47,000....The first 10 days were tough...anxious, headaches, fogginess...since then no problems...undetectable, CD4 over 1200.
Most people have no side effects...be patient, you'll be fine!
5/29/08 confirmed HIV+
6/23/08 Vl 47500  CD4 511/29% CD8 .60
start atripla
8/1/08 Vl 130  CD4 667/31% CD8 .70
9/18/08 Vl un  CD4 not tested
12/19/08 Vl un CD4 723/32% CD8 .80
4/3/09 Vl un CD4 615/36% CD8  .98
8/7/09 vl un CD4 689/35% CD8 .9
12/11/09 vl un CD4 712/38% CD8 .89
4/9/10 vl un CD4 796/39% CD8 1.0
8/20/10 vl un CD4 787/38% CD8 1.0
4/6/10 vl un CD4 865/35% CD8 .9
8/16/10 vl un CD4 924/37% CD8 1.0
12/23/10 vl un CD4 1006/35% CD8 .9
5/2/10 vl un CD4 1040/39% CD8 .9
8/7/13 vl un CD4 840/39% CD8 .9

Offline thepostergirl

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #16 on: November 24, 2012, 10:08:59 PM »
lincoln, I was diagnosed a little over a month ago and have recently started on meds as well. i've been on them for a week and i feel like i slept the entire week and gained like a million lbs.. but it's getting better. i'm adjusting  - and i hope you are as well.

leatherman - thank you for such an insightful post as a newbie it really helped to read your words, thank you.

be blessed all - echo
Diagnosed : October 2012
CD4 count high
Viral load 19,600
Started Stribild
Viral load is now undetectable

Offline lincoln6echo

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #17 on: November 25, 2012, 10:00:12 PM »
Glad you were able to start right away postergirl and adjusting ok.
I'm doing good overall. The only thing that is persisting is bad GI  issues..bloating, gas, etc.  nasty.

I'll talk to the Dr this week when I go in for my next appointment.

what are you on?

Offline leatherman

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #18 on: November 25, 2012, 10:32:53 PM »
The only thing that is persisting is bad GI  issues..bloating, gas, etc.  nasty.
have you called the doctor's office and asked about taking something (although there may be timing issues) from over-the-counter to help with these issues? ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline lincoln6echo

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #19 on: November 26, 2012, 08:47:29 PM »
have you called the doctor's office and asked about taking something (although there may be timing issues) from over-the-counter to help with these issues? ;)

Good question but no, not yet.  At the same time I started meds, I also started taking greens plus and skim milk powder in my oatmeal (for extra protein).  They asked me to remove that from my diet to see if it was either of those two things. Well, I did.  It's been two weeks and the GI issues persist.  So, I'll ask them tomorrow at my appointment about something to help. 

I'd be ok with a little discomfort now and then in return for life saving meds, it's just that as it stands right now, I have to keep running to the bathroom in a panic!
« Last Edit: November 26, 2012, 08:59:41 PM by lincoln6echo »

Offline leatherman

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #20 on: November 26, 2012, 09:19:35 PM »
It's been two weeks and the GI issues persist.  So, I'll ask them tomorrow at my appointment about something to help.
so how long have you been on the meds now? I often caution people to give it some time - as in 4-8 weeks. It can take some time while viral loads are dropping, and your HIV is on the run; while your immune system is rebuilding, not to mention your system getting used to these new chemicals being kept in your system sustained at a certain level. There's  a LOT going on at first and it should come as no surprise that our bodies react with barfing, farting, gurgling, bloating, burping and diarrhea. LOL (I mean you gotta laugh about it, right??! he he he)

hope the visit with the doc goes well, and I hope he can offer you some better suggestions/solutions for your issues.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline thepostergirl

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Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #21 on: November 28, 2012, 12:01:05 AM »
lincoln,
         i'm on stribild and i consider myself incredibly lucky because i'm working through the pharmaceutical company to pay for my medicine which would otherwise be over $2,000 a month and because of what i make on disability and health insurance wise i'm being approved for the medicine. the doctor gave me the option to wait as long as i felt i needed to before starting a regimen but i felt like the sooner the better. i'm looking for "undetectable" status.

how you feeling darling?
Diagnosed : October 2012
CD4 count high
Viral load 19,600
Started Stribild
Viral load is now undetectable

Offline lincoln6echo

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  • Posts: 109
Re: Started on meds today, one month after diagnosis. What was it like for you?
« Reply #22 on: December 06, 2012, 06:56:33 PM »
Hey Leather, I've been on meds for 2 months now.
I just got my latest labs and my CD4 dropped a bit from mid 600's to mid 500's (although from what I've read on here, that's not a big deal and can fluctuate) and my VL is now 1048. 
That is a huge improvement from where I first started.
I'm still having GI issues but they seem to be getting a little bit better. I talked to the Doc about it and had some nasty stool tests done. :o

I've cut out the skim milk powder from my oatmeal and the greens plus for now...see if that has anything to do with it. The Doc says these meds don't have these types of side effects...so I dunno.

thepostergirl, i'm doing ok! have my ups and downs....I told one other person of my status the other day and it went well...scared as hell to tell my closer friends tho and family tho.
how are you doing?





Offline thepostergirl

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lincoln - sorry it took so long to message you back. i'm doing pretty fantastic - my VL is undetectable now, i sleep well and i stay with an upbeat attitude about it all. i hope your meds are working and that things are getting easier as time goes by. thanks for asking about me. how are you?
Diagnosed : October 2012
CD4 count high
Viral load 19,600
Started Stribild
Viral load is now undetectable

 


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