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Author Topic: New Numbers and Starting Meds....feeling nervous  (Read 3606 times)

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Offline PeteNYNJ

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New Numbers and Starting Meds....feeling nervous
« on: December 11, 2009, 10:28:00 PM »
I went to the doc today and we determined it is time to start meds

CD4 590 (up from 550)
VL 400,000 (way up from 10000)
% 19 (down from 22)

I am starting on Keletra and Truvada (cant take Atripla because I have MAJOR depression issues)

I am nervous to start - I know that is silly but it is the way I feel.  Anyone else on the same combo who can tell me what side effects to expect (my doctor only mentioned some nausea and loss stools).

Thanks
Pete
« Last Edit: December 11, 2009, 11:13:58 PM by PeteNYNJ »

Online Miss Philicia

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #1 on: December 11, 2009, 11:06:47 PM »
I would always recommend having imodium on hand when going on Kaletra.  Some people never need it, some people only need it on an infrequent basis, and some (like me) had to take it with every dose of Kaletra.  You'll just have to play it by ear.

The viread in Truvada can cause bloating/gas but for me it's never a daily thing and is tolerable.
"Iíve slept with enough men to know that Iím not gay"

Offline Assurbanipal

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #2 on: December 12, 2009, 07:48:24 AM »
I was on that combo for 3 years -- just changed.

Short term side effects --- for me, the diarrhea was fixable after the first week by eating more fruit (apples), nuts (walnuts)  -- things with soluble fiber.

Longer term side effects (cholesterol and bone mineral density loss) and a persistent low level VL were why I stopped. 

But not everyone gets the same sides -- and it was easy to take with no problems for the last 3 years.

Ask your doc about getting your vitamin D levels tested as well as lipids (bone mineral density)
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 Inchlingblue

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #3 on: December 12, 2009, 10:16:48 AM »
Just curious if you don't mind my asking: why Kaletra? It's a powerful drug but there are now better ones out there. It's not part of the "Preferred Options" when starting meds.

I would only consider Kaletra if I ever wanted or needed to try monotherapy since works for some that way.

Offline bear60

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #4 on: December 12, 2009, 11:57:16 AM »
Hi Pete
I just want to give you my support in whatever you decide.  Hang in there.

Joel
Poz Bear Type in Philadelphia

Offline MarkB

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #5 on: December 12, 2009, 11:59:47 AM »
I am starting on Keletra and Truvada (cant take Atripla because I have MAJOR depression issues).


This may be a completely inappropriate thing to say, and I would be happy to withdraw this comment if it is judged so, but when I was put on Atripla I was intensely depressed and had told my doctor that I was actively contemplating ending my life. After a week on Atripla I not only had more energy than I had had in years, but I also felt happy. Three months in and the depression has not returned: I have a life to live.

Now, the lack of depression may have nothing whatsoever to do with Atripla. But what is also certain, in my case, is that it did not exacerbate the problem. In fact the only detrimental side effect I have had has been heightened cholesterol. So while that regime certainly may cause difficulties for some who live with depression, equally it may not.
« Last Edit: December 12, 2009, 12:02:02 PM by MarkB »

Offline skeebo1969

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #6 on: December 13, 2009, 05:43:49 AM »


 
This may be a completely inappropriate thing to say, and I would be happy to withdraw this comment if it is judged so, but when I was put on Atripla I was intensely depressed and had told my doctor that I was actively contemplating ending my life. After a week on Atripla I not only had more energy than I had had in years, but I also felt happy. Three months in and the depression has not returned: I have a life to live.

Now, the lack of depression may have nothing whatsoever to do with Atripla. But what is also certain, in my case, is that it did not exacerbate the problem. In fact the only detrimental side effect I have had has been heightened cholesterol. So while that regime certainly may cause difficulties for some who live with depression, equally it may not.


I agree...
I despise the song Love is in the Air, you should too.

Offline Buckmark

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #7 on: December 13, 2009, 11:02:36 AM »
...

I am starting on Keletra and Truvada (cant take Atripla because I have MAJOR depression issues)

I am nervous to start - I know that is silly but it is the way I feel.

...

It's normal to be nervous when starting meds, because it's a big step.  You've probably read other forum members' tales of starting meds, and they overwhelmingly feel better after starting them.  Side-effects can vary, even for the same person taking the same med:  some will have side-effects, some won't.  I'm right there with you regarding Atripla and depression -- that's why I'm taking Viramune now.  Again, that's just my experience.  Others have no problem with it.  But there's no reason to take that chance if you don't want to, since there's plenty of other options.

I've never taken Kaletra, so I can't offer you any specific advice there.  Thankfully, others have done so.  I'm sure you'll be able to manage it.

Cheers,

Henry

"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

Offline PeteNYNJ

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #8 on: December 13, 2009, 01:45:43 PM »
Regarding Atripla - it has taken me about a year to finally get my depression meds leveled out so both my doctor and I didn't want to chance it.

As far as the Kaletra goes, it is what my doctor recommended.  I didn't ask him too many questions about it because it is a combo I know quite a few people have been on here and I didn't really hear any horror stories.

He treats a large majority of HIV+ patients, so I am confident in his decisions.

I start tomorrow so I will let you know if anything funky happens

Wish me luck!!!

Offline Inchlingblue

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #9 on: December 13, 2009, 04:01:25 PM »
Maybe you already know this but just in case:

Since you have insurance you should see how soon they allow a Rx refill and do it as soon as you can each month so you can build up an emergency supply.

My insurance allows refills every 22 days so I've been refilling every 22 days and I now have a 3 month supply in case anything goes wrong. Bocker has said he does mail order and orders a 3 month supply every 2 months so he has an extra month each time.

If by any chance one changes meds it can always go to charity (www.aidforaids.org).

PS: If you do a search for "Kaletra" on here you can see lots of threads about it, I think there's a segment of people on it that experiences GI issues with it.
« Last Edit: December 13, 2009, 04:03:18 PM by Inchlingblue »

Offline Assurbanipal

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #10 on: December 13, 2009, 06:26:07 PM »
PS: If you do a search for "Kaletra" on here you can see lots of threads about it, I think there's a segment of people on it that experiences GI issues with it.

In defense of Kaletra, many of those stories on the forums date back to a different formulation (capsules rather than the current pills).  It took me a while to figure it out just reading on here but there are fewer recent stories of severe Kaletra GI effects under the pills.  It does still push towards diarrhea but many seem to be able to control it and I've not seen any recent stories of explosive diarrhea due to Kaletra (there  was an ATRIPLA one though)

But do watch out for the cholesterol and make sure you get it monitored. 
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 PeteNYNJ

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #11 on: December 13, 2009, 08:02:56 PM »
Thanks guys


Yes, my doctor did mention gastric issues, but said if they happen they should subside and if that doesnt happen then we will readdress.

Inchlingblue - thanks for the heads up regarding reordering.  I will check out how early I can refill.

Weird thing - my insurance company says I can't order these drugs through the mail.   I have one of those compare and contrast things on the insurance website and the mail option says rejected. 

I will cross all those bridges when I come to them.  Right now I am just hoping this combo works out for me.  I go back to doc in 6 weeks to monitor my numbers - make sure everything is working ok.

Offline Inchlingblue

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #12 on: December 13, 2009, 10:22:02 PM »

Weird thing - my insurance company says I can't order these drugs through the mail.   I have one of those compare and contrast things on the insurance website and the mail option says rejected.  

Same with me and the mail order. You'd think it would be cheaper for them but whatever, it's no big deal.

FYI, in case you have not seen the latest changes to the treatment guidelines regarding what meds to start with:

What to Use

The panelists also significantly changed the roster of treatments that are considered preferred when a person starts HIV treatment for the first time. The new preferred treatments are Sustiva (efavirenz), Reyataz (atazanavir) boosted by low-dose Norvir (ritonavir), Prezista (darunavir) boosted by low-dose Norvir, or Isentress. The revised guidelines recommend that all four treatments be combined with Viread (tenofovir) and Emtriva (emtricitabine)ótypically used together in the fixed-dose combination tablet Truvada (Sustiva, Viread and Emtriva are often used together in the fixed-dose combination tablet Atripla).

Kaletra (lopinavir/ritonavir) has been downgraded to an alternative treatment option, except in pregnant women, where it is preferred, notably in combination with Combivir (zidovudine plus lamivudine).


LINK:

http://www.poz.com/articles/hiv_dhhs_guidelines_761_17645.shtml
« Last Edit: December 13, 2009, 10:25:31 PM by Inchlingblue »

Offline David_CA

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #13 on: December 13, 2009, 11:18:05 PM »
My insurance allows refills every 22 days so I've been refilling every 22 days and I now have a 3 month supply in case anything goes wrong.

While I completely agree (and do this as well, when possible), insurance companies don't always let one get by with it indefinitely.  I went to have a Rx refilled, and my insurance company wouldn't authorize it.  It had actually been 31 days since the last refill.  Evidently, I was 'audited', and 6 months of refill history was checked... they said I should have had at least 15 doses remaining.  The pharmacist thought it was odd... it seems he'd not had that happen before. 
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline notoutinilm

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #14 on: December 14, 2009, 05:13:52 AM »
While I completely agree (and do this as well, when possible), insurance companies don't always let one get by with it indefinitely.  I went to have a Rx refilled, and my insurance company wouldn't authorize it.  It had actually been 31 days since the last refill.  Evidently, I was 'audited', and 6 months of refill history was checked... they said I should have had at least 15 doses remaining.  The pharmacist thought it was odd... it seems he'd not had that happen before. 
Interesting.  I am trying to build up a few weeks extra supply just in case, who knows, weather, travel what have you....

Offline PeteNYNJ

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #15 on: December 16, 2009, 08:25:04 PM »
So I started my Truvada/Kaletra today and so far so good - except for some diarrhea but I kinda expected that due to what I read.

One thing the hypochondriac on me is obsessing over is the warning of Lactic Acidosis on the bottle of Truvada.  It says it is rare but I can't seem to find any info on what "rare" means.  Is this something that happens as soon as you take the truvada or does it happen over time?  Is it something that would be very obvious if I did have this condition?

Should I be worrying about this at all?   The crazy in me needs a little reassuring :) 

Pete

Offline bocker3

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #16 on: December 16, 2009, 08:31:36 PM »
Rare, generally means someone's lawyers told them to put in on there to cover their asses, but it isn't likely to happen.  I wouldn't obsess over it.  I know, I know, easier said than done.......
Focus on the fact that you are now beating on the virus instead of the other way around.

I'm happy to hear that it hasn't been too bad for you.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline Assurbanipal

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #17 on: December 16, 2009, 08:48:49 PM »
Pete

Not sure there is a lot of benefit in worrying about it per se.  It's more that you should pay attention to how you feel these first few weeks,  If you have serious issues call your doctor and talk to him/her.  As long as you are paying attention to your body, you and your doc can decide if something is serious and warrants a medicine change well before it harms you.

Or maybe you could keep an online log of starting the meds like risred did -- I think that's helpful to other people starting and it certainly means you will get feedback if anyting looks odd.

Hope things stay uneventful for you

A
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 PeteNYNJ

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #18 on: December 17, 2009, 01:58:21 AM »
ok...so drinking (I shouldnt but was stressed) on the drugs is WAY different.  I had 2 beers and I feel like I was X years ago...   wow...like wow

This feels really wierd...I tried to lay down and sleep but my cat rubbing on my leg was so overwhelming I had to get up. 

wow...like wow   

the side effects should say "absolute wonderful feeling if one beer consumed but probably not good because your cat will make you jump out of bed....and I don't even like pussy"

lol  forgive me folks   weird night   

Offline max123

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #19 on: December 17, 2009, 07:28:28 AM »
hi pete,

sorry to hear that you've crossed the meds bridge, but it's great that you're being proactive.

i'm kind of with inch on the kaletra...my understanding is that it is an outdated med. did you have any resistance issues that warranted it? truvada/isentress appears to be a good new combo with minimal side effects. just a thought.

good luck with all.

max
1/86 - 6/08 (annually): neg elisa
7/09: pos elisa/pos wb
8/09: cd4 560, cd4% 35, vl 13,050
12/09: cd4 568, cd4% 33, vl 2,690
4/10: cd4 557, cd4% 29.3, vl 6,440
7/10: cd4 562, cd4% 29.6, vl 3,780

Offline PeteNYNJ

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Re: New Numbers and Starting Meds....feeling nervous
« Reply #20 on: December 18, 2009, 05:32:55 PM »
3rd day on the drugs and have diarrhea and gas/bloating.  Not very pleasant but nothing I cant deal with in he long run.  Imodium seems to help with the diarrhea but not the gas.  I am going to pop some tums in a bit to see if that works. 

off to watch some bad TV! 

 


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