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Started on meds today, one month after diagnosis. What was it like for you?

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lincoln6echo:
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. 

leatherman:
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

Cojo:
Fantastic post Leatherman. As usual, you brought a tear to the eye!

t3st_b3d:
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!

lincoln6echo:
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!

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