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Author Topic: Yes, I'm on the pill. (last night)  (Read 2096 times)

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Offline StacheBC

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Yes, I'm on the pill. (last night)
« on: October 29, 2009, 05:32:19 PM »
It's been a while since I've posted. Although have read many times as a "guest".
In general have been doing fine although probably in the last year I started having a few /mouth issues/, from cold sores (sometimes several at a time or as one heals another one shows up, yes non stop action... they way I love it), enlarge tonsils that at times give me a nice sore throat for 2 or 3 weeks at a time, leading me to get a few tests for strep over this period (yet all come back negative and not other symptoms) and at times some white spots on the side of my tongue (diagnosed as Oral Hairy Leukoplakia). These come and go in cycles... but cycles have become more frequent.

My numbers have been Ok. Relatively stable, yet over the past 2 and half years graphs do show a slow but sure downward trend.
Have had 2 readings with absolute numbers being in the low 400's.  CD4%  now at the lowest it's ever been at 18%. My VL for most of the time has been relatively low for someone not on meds, < 10k. Although last reading did show 19k.
Last numbers CD4: 430, 18%. VL: 19k (my personal main beef is the low % and how it's been declining).

My doc didn't see the need for me to start med "right now" but he did ask me to consider it as an option if I thought I was ready.
At first I thought I'd do one more reading at the end of the year as planned and if % stayed in the teens or CD4 didn't bounce back above 500 I'd start meds in the new year.
Doc did put in request to get genotype done... on the very first VL sample done when I first got diagnosed and the very last one I did in Aug/09. I must admit that I was surprised that apparently they keep a blood sample of all VL I've done since being diagnosed... not sure if that is a Canadian thing or if it's common practice for HIV treatment. Will this be my legacy to humanity??? Blood samples in some fridge.

Start of October got another cycle of mouth issues... and thought to myself, what the hell am I waiting for. I'm on the cusp and if I find a regime that works for me why not start now.
Booked appointment with doc to start treatment as soon as I could. Saw him Wednesday last week, got good news that I don't have any known resistances and all options of treatment were open to me. He suggested Atripla, I inquired about boosted Reyatez/Truvada... In the end we decided Atripla and if I had any problems we'd switch.
He sent paper work for approval (since here in BC we receive the HIV meds for /free/)... 3 days later got a call back that everything was rubber stamped and I could come in and get my meds and have a half an hour training with pharmacist about taking them and how to deal with side affects if any.
Monday I picked up a 30 day supply of Truvada/Sustiva. Pharmacist explained that *if* I did have any problems with the combo, Sustiva most likely would be the culprit... so it would make it easier for them if I took the same medication in different pills so if they had to switch the Sustiva component, Truvada would not go to waist. I said "No prob. Quality is good. But who doesn't like some quantity"
If after a month I don't have any major side effects, then they would actually give me Atripla pill with a supply for a longer period of time.

Pharmacist told me to take my pills an hour before bedtime...  (for me that translates to 8:30, yes very exciting lifestyle here, bed by 9:30pm) at least for first few times, just so I could have an idea of initial dizziness common when starting this specific combo.
Last night took very first dose. After an hour I did feel like I was drunk... Yes usual dancing on the table proceeded (not really)  went to bed taking my Zopiclone (generic Ambien that I've taken for the last 5 years!... they don't make me pass out like they used to, but even after 5 years they give me a good night sleep.). Felt a bit spaced out but soon feel asleep. No dreams... yet maybe ?!!?
This morning felt fine... I only feel a very slight dizziness, almost the same as if I took a good dose of over the counter daytime cold medication, very doable. I did take the day off work but to be honest I would have had no problems had I gone to work.

Just the very start of my treatment and maybe some surprises await me. But so far I'm glad I decided to start treatment, for some reason I do feel more in control.

Offline leatherman

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Re: Yes, I'm on the pill. (last night)
« Reply #1 on: October 29, 2009, 06:32:16 PM »
hey, that's all good to hear. ;D it sounds like it was time, both physically and mentally, for you to start on some meds. Now your body won't have to fight so hard all on it's own and some of those little side issues will hopefully soon be a thing of the past. Maybe you'll even be one with the little-to-no side effects, and in a few weeks you'll wonder why you ever considered waiting until the start of next year.

Good luck with the meds!
leatherman (aka mIkIE)


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

Offline AboutToStart

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Re: Yes, I'm on the pill. (last night)
« Reply #2 on: October 29, 2009, 09:00:29 PM »
The warmest reccomendation I can give you (and all other "beginners") is to do keep the 2hrs buffer between food and taking the pill (i.e. Sustiva). For me - even 3-4 hrs. This would make the WHOLE difference between bein groggy and dizzy the next day or not. Even now, after 3months, as side effects HAVE SUBSIDED, if I eat (or drink sugars) an 1hr prior - I'd be knocked out.

Good luck!

Offline karry

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Re: Yes, I'm on the pill. (last night)
« Reply #3 on: October 29, 2009, 10:32:00 PM »
Hello StacheBc!
Wishing you goodluck with the meds. Will keep you in my special prayers that all goes well.
Hugs.
K.
Take it a day at a time....and be positive about it too!

Offline StacheBC

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  • Posts: 266
  • Hello
Re: Yes, I'm on the pill. (last night)
« Reply #4 on: October 31, 2009, 12:04:31 PM »
Actually on 2nd and 3rd day woke up feeling my usual self.
Your mileage may vary... but so far it's be a lot better then expected.

@ AboutToStart
I think your recommendation is very wise. I have been quite careful of what I eat (avoiding fatty foods in the evening) and when I eat. Sort of follow things by the book at least for the first while. Giving my body and myself a chance to adjust.

@Karry
Thanks sweetheart. You must have some good connections up there, since things have been going very well.

@ leatherman
I think you hit the nail in the head. I was on the cusp physically and metally I was prepared. (May I add: Your posts are a joy to read, always kind and insightful.)

Offline BlueMoon

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Re: Yes, I'm on the pill. (last night)
« Reply #5 on: November 01, 2009, 06:19:19 AM »
Good to see things going well so far. 
...................VL.....CD4.....%
-----------------------------------------
08/10-- ......<40.....290.....42
05/10-- ......<48.....290.....46
02/10-- ......<48.....481.....44
10/09-- ......<48.....277.....46
07/09-- ......<48.....300.....38
05/09-- ........51.....449.....39
03/09-- Added Isentress
02/09-- ........65.....299.....34
11/08-- ........62.....242.....40
08/08-- ........66.....212.....29
05/08-- ......202.....217.....27
03/08-- ....5210.....187.....21
02/08-- Began Truvada/Reyataz/Norvir
12/07-- 273,000.....157.....22
11/07-- 229,000.....209.....22
10/07-- Diagnosis

It's a complex world.

Offline leatherman

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Re: Yes, I'm on the pill. (last night)
« Reply #6 on: November 01, 2009, 09:41:47 AM »
Actually on 2nd and 3rd day woke up feeling my usual self.
WooHoo! That's good news to hear.

Isn't it amazing the difference in the way meds affect various people differently. Though I've had some reactions to meds over the years (sometimes rashes, a lot of times barfing), I always start taking my meds with only one happy thought - that it's going to do nothing more than WORK. ;)

But to be on the safe side ;), I always start when I have a day or two afterwards when I can be sick (sometimes there may be sides for only a day or two as your body acclimates to the new chemicals you've introduced into it); and I always tell someone that I'm starting a new med. I've never had a med send me into a coma or anything ::) :D; but that's just one of the 1000s of possible horrible scenarios that if I plan for won't be the one to happen. LOL

Hopefully Stache, you've lucked right into the right med taken at the right time that'll do the right things for you. When will you have labs done again? Maybe the hardest part of starting meds will be just the waiting until you fine out how well that they've been working for you. ;)
leatherman (aka mIkIE)


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

Offline StacheBC

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  • Hello
Re: Yes, I'm on the pill. (last night)
« Reply #7 on: November 01, 2009, 01:19:34 PM »
When will you have labs done again? Maybe the hardest part of starting meds will be just the waiting until you fine out how well that they've been working for you. ;)
I was asked to get lab work done 3 weeks after starting, then have appointment with my Dr and pharmacist after 4 weeks to discuss results of blood work etc. I'll update this thread when I do get my results  :)
Once and while I feel a little /flash/ like sensation all over my skin, very quickly and doesn't bother me but mind wise (my greatest concern with Sustiva), my experience has been great so far.
To be honest it hasn't even crossed my mind that this combo might not work (suppress viral load). I just feel very positive that it probably will. Almost like if you go to Disneyland... you're bound to see Mickey Mouse at some point... that sort of feeling  :D Maybe I'll end up just seeing Goofy  ;D and have to go to Disneyland again (new combo).

Hugs



Offline leatherman

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Re: Yes, I'm on the pill. (last night)
« Reply #8 on: November 01, 2009, 01:56:51 PM »
Maybe I'll end up just seeing Goofy  ;D
ROFL
my first late partner and I went to Disney way back in the early 90s and didn't see Mickey but saw my favorites Tigger and Pluto. Stupid airport xrays or something back then though zapped 4 rolls of film so we came home with no pix. Boy I am glad for these digital camera and memory sticks now. ;) Thankfully my brain is still working fine though (though other might say differently :D) and I do remember being there and posing for those pictures.

So you'll probably be getting some results back then sometime after Turkey Day and before Christmas. Cool. I'll keep my eyes out and be waiting to hear some good news about you back down to undetectable. (hmm maybe that should be, I'll keep my ears out since I'm waiting to hear. damn mixed metaphors and cyber-lingo LOL)

If I were you, don't be too troubled by the tcell count just yet. It may take those a while to climb up some, plus, as my doctor stated for waiting for my next labs until after the holidays (even though I just dropped from 275 to 209) is that stress and excitement of the holidays can possibly make your tcell count not quite normal.

Continued good luck with the meds ;)
leatherman (aka mIkIE)


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

Offline StacheBC

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  • Hello
Re: Yes, I'm on the pill. (last night)
« Reply #9 on: November 30, 2009, 10:50:52 PM »
Well just got the results from blood drawn 3 weeks after starting Sustiva/Truvada (Atripla).

My CD4 went back up to 650, my percentage up to 24%. (it was 18% for the last 2 readings)
Viral Load < 50 copies !!!
Although my numbers were not /out of control/, I must admit I wasn't expecting such a huge benefit just after 3 weeks. I'm still in Ohhhh. ;D

I've been very fortunate... a month later, besides some minor dizziness about an hour after taking the pill (if I don't go to bed right away). I have no side effects to speak of.
I feel great, it sort of reminds me how I think I used to feel before I acquired HIV. I'm very thankful.

Because I had no problems with side effect, this time they gave me the Atripla formulation (single pill), instead of Sustiva and Truvada in separate pills.
The only thing I will mention on my next visit is the fact that I noticed that the prescription label on the bottle, when I was taking the pills separately, the total price came to a bit less than $1,500 (Canadian Dollars) for a 30 day supply, for both pills.
The Atripla bottle says $2,346.50, for a 30 day supply (??!!??).
So I'm going to ask the pharmacist if there is an actual cost difference to the province. Since taking 1 pill or 2 makes no difference for me... if there is a savings, even if not as high as prescription label claims, might as well save.

Offline Assurbanipal

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Re: Yes, I'm on the pill. (last night)
« Reply #10 on: December 01, 2009, 07:32:09 AM »
Congratulations.   Those are speedy ... and great... results!
5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline tommy246

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Re: Yes, I'm on the pill. (last night)
« Reply #11 on: December 01, 2009, 09:38:18 AM »
Great results so quick as well i get my results next week after 24 days on atripla feeling great hope my % shoots up as well mine was low 15% but cd4 was 591 with 59.000 vl so fingers crossed
jan 06 neg
dec 08 pos cd4 505 ,16%, 1,500vl
april 09 cd4 635 ,16%,60,000
july 09 ,cd4 545,17%,80,000
aug 09,hosptal 18days pneumonia cd190,225,000,15%
1 week later cd4 415 20%
nov 09 cd4 591 ,vl 59,000,14%,started atripla
dec 09  cd4 787, vl 266, 16%
march 2010  cd4 720 vl non detectable -20  20%
june 2010  cd4  680, 21%, ND

Offline leatherman

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Re: Yes, I'm on the pill. (last night)
« Reply #12 on: December 01, 2009, 09:45:16 AM »
WooHoo! for such good numbers back so quickly. But just as important to read was:
"I feel great, it sort of reminds me how I think I used to feel before I acquired HIV."
 ;D
leatherman (aka mIkIE)


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

 


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