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Author Topic: Back from the dead  (Read 4433 times)

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Offline john

  • Member
  • Posts: 21
Back from the dead
« on: June 07, 2006, 02:17:06 PM »
OK not literally, but being recently diagnosed i have realized that I have been in a fog for the last four to five years. It seems like I can remember things but Its like I almost wasn't me. I have made the choice to start A PI regimen(reyataz,Truvada,Norvir) due to the fact that Sustiva scares me. It seems as though Sustiva is the first line choice but, everything I read just seems like so many Side effects.I hope I Made the right choice. Just filled my script and I can honestly say" If it wasn't for this site I wouldn't know how I would cope" Thanks all(my 2 cents)
Jon be good

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Back from the dead
« Reply #1 on: June 08, 2006, 08:12:34 AM »
Hey John,
Welcome! I know exactly what you mean about being in a fog, kind of detached, like you are watching your life but not really being a part of it. I was there - for about seven years.

I finally snapped out of it and began taking control of my life and my health. It sounds like you are doing that as well. Good!

I have no experience with your particular regimen, but I have been on a PI regimen (AZT, Epivir, Crixivan) for 10 years.

First line treatments seem to come and go, kind of like a "cocktail du jour." What is important is for you to find a regimen that works for you and that you can adhere to.

As far as Sustiva goes, I know a lot of people who are taking it. Some do very well with it, with few or no side effects. Others, well, just didn't fare as well.

The virus and meds act differently for all us. So, if this regimen works for you, that's great.  :)

Since you are just starting, be aware there may be side effects, such as diarrhea, etc., that could last anywhere from two to eight weeks. After that, most of us have found that things calm down.

I'm sure your doctor mentioned this, but just in case he/she didn't, I thought I would.

By the way, what were your numbers prior to your starting meds? One thing I and many others do is to keep copies of our lab results so we can track them over time. It is one of the best ways for you to take control of your own health.

Hang in there and let us know how you are doing.

HUGS,

Mark
« Last Edit: June 08, 2006, 08:17:25 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline doyourowndamndishes

  • Member
  • Posts: 85
Re: Back from the dead
« Reply #2 on: June 08, 2006, 08:49:48 AM »
Hi John!

Welcome to the Clan!  Many of us go through that period of adjustment, getting use to being hiv+, coming to terms with it, accepting it and finally deciding to take the bull by the horns and be an active participant in our health.  With me, I had a gut feeling that I was hiv+ but it took a few years before I found a new family doctor that specializes in hiv and then went to be tested for confirmation.  After finding out it still took me about a year, maybe a year and a half before I was ready to deal with hiv and take control of my health.  Like Mark, I have no experience with your combo, except the reyataz (Atazanavir).  My first cocktail was Nelfinavir + Combivir.  I've been on PI therapy ever since.  Presently I'm on Kivexa (Epizcom: 3TC+ABC) + Atazanavir.  I've had great results with reyataz: just before the switch to reyataz I was on Kaletra.  Even though it is a very powerful drug, it is notorious for screwing up cholesterol and triglycerides.  I was no exception.  Rather than adding a "statin" drug to control the lipid profile, I switched to atazanavir and the results have been night and day. 

Regarding side effects, I agree with what Mark mentioned.  I also want to add that some side effects, even after the 8 week window, can sometimes jump up and bite ya in the ass and then disappear as quickly as the come on.  For example, about every 3 or 4 months I'll get a bout of insomnia.  I know insomnia is a possible side effect of me meds but I never had that problem the first 2 months.  It hits me for a day or two and then goes away, no problems, till it pops it's head up again.  So don't be shocked if side effects make encore appearances.  If they come back and persist, then it's a good idea to talk to your doctor.

Take care and keep in touch.

Cheers,

Alan
"All that we are is theresult of what we have thought." -Buddha

Offline john

  • Member
  • Posts: 21
Re: Back from the dead
« Reply #3 on: June 09, 2006, 09:58:14 AM »
cd4 188 vl 80,000 and some OI Bulls**t
 
Anyway, just curious to know where other people started and where they are now. also what drugs were used.
My Id doc tried to basically shove sustiva down my throat. I chose Reyataz because of things I read in the old Forums. I realize everyone needs to make their own choices. I passed on Kaletra Because I was worried about lipid problems as I am working on improving my diet. I just hope I don't turn yellow.

                Thanks for your help...   John
Jon be good

Offline aztecan

  • Member
  • Posts: 5,414
  • 29 years positive, 57 years a pain in the butt
Re: Back from the dead
« Reply #4 on: June 09, 2006, 10:16:10 AM »
Back in the dayswhen I started, they had different thresholds, so it may not be a fair comparison.

But, here is where I started in March 1996: Viral load in the 60,000 range; CD4s in the 400s, (440 something, I think.)

As of January (my last labs): Viral load undetectable; CD4s - 1,462.

Based on the numbers you quoted, I agree with you, it is time to start.

Just FYI.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline doyourowndamndishes

  • Member
  • Posts: 85
Re: Back from the dead
« Reply #5 on: June 09, 2006, 10:30:33 AM »
Hey John,

When first diagnosed my cd4s were 260s; v.l. 150,000+.  I started treatment once the cd4s dropped to low 180s and me doc added Bactrim to the mix as a preventative for PCP.  Once the cd4s bumped back up over 200 and stayed above, he took me off the Bactrim and I have not been on it since. 

First combo: Combivir + Nelfinavir
Second Combo: Trizivir + Kaletra
Third combo: Trizivir + Atazanavir + Ritonavir
Fourth combo: Kivexa + Atazanavir

I went with Kaletra because at that time there was no Atazanavir (Reyataz) out there.  Kaletra is still considered the "preferred" drug over Atazanavir but anyone I know whose been on Kaletra has eventually switched to Atazanavir.  Have I gone yellow, not yet but then with my skin colour I'd probabily not know unless it was the eyes that turn!

My last results were cd4s in the 500s I think; v.l. <50.  I will be getting my latest lab results back on the 13th of this month so I can always update later if interested.

Cheers,

Alan

"All that we are is theresult of what we have thought." -Buddha

Offline john

  • Member
  • Posts: 21
Re: Back from the dead
« Reply #6 on: June 12, 2006, 12:34:55 PM »
The Information here is priceless. The doctors are all to sober for me. Anyway and I could be wrong but I have read that mutations to PI regimens are more subtle and take longer than Sustiva. I have also read that one mutation to sustiva and your in trouble. keep in mind these are only things that I have read. Anyway I was wondering if anyone has ever tried IL2. I have read allot about it and I realize its expensive and not covered by insurance. Hey, I would rather have a second mortgage to pay than not be here. Also, I am hoping that integrase and the new materation inhibitors can help keep a lid on this whole Resistance thing. If we can get a good backbone drug with little or no resistance I think we would all sleep a little better.
                                 
                                   Thanks John.
Jon be good

Offline DingoBoi

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  • Posts: 1,355
  • Bailey's Infected Cream™ Served since 2004
Re: Back from the dead
« Reply #7 on: June 12, 2006, 02:40:12 PM »
i am on sustiva and truvada and for the most part, it works extremely well in suppressing the virus.  Side effects for me were initially minimal and are increasing it seems after a year.  But many, many people do very fine on this combo with very little side effects.

All combos are going to have some side effects, so it's like trading one set of side effects for another.  Some combos are more tolerable for some than others as well.

I wouldn't discount sustiva as a possible regimen, but luckily, there are a few options to start with.

Offline Robert

  • Member
  • Posts: 2,649
Re: Back from the dead
« Reply #8 on: June 12, 2006, 11:01:55 PM »
Hi John.

I started the Reyataz,Norvir,Truvada combo 2 1/2 years ago (Dec. 2003).  I started out at VL: 500,000.  CD4:  18.

I became undetectable at 3 months.  My CD4 count is 540 (33%).  It's been a slow but steady uphill climb on the t-cells.  With adherence, I don't anticipate any problems.

I'm real pleased with this particular regimine.  The side effects are minimal and it seems to work wonders. 

I think you made the right decision

robert
..........

Offline john

  • Member
  • Posts: 21
Re: Back from the dead
« Reply #9 on: June 14, 2006, 08:51:35 AM »
Thank for all the information. definitely let me know your new numbers as they come in. Just curious about 2 things that are unrelated. I tend to drink quite a bit of soda. Do you think this will interfere with my meds? Second, How many combos do I really have if I fail this regimen? (ex. I am on my first line combo,)


                    Thanks, John

PS hoping to break 200 on my next labs
Jon be good

 


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