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Author Topic: Wondering if anyone . . .  (Read 4729 times)

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Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Wondering if anyone . . .
« on: November 07, 2006, 09:43:10 AM »
is on the same medication I am.

I take AZT, 3TC (Epivir) and Crixivan. I know, its an old regimen not often used these days.

I hear of folks taking the AZT/3TC combination, usually as Combivir. But I never hear anyone mention Crixivan.

I just was wondering if anyone else takes Crix and what their experience has been with it.

Just asking . . .

HUGS,

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

Offline MSPspud

  • Member
  • Posts: 613
  • Joined Mar 2005 - Formerly UofMurbs
Re: Wondering if anyone . . .
« Reply #1 on: November 07, 2006, 11:06:05 AM »
I don't have first-hand knowledge, but I did go out w/ a guy on your regimen.  He had successful suppression for 7+ years.  He did get kidney stones twice from not drinking enough water, though remained on the regimen and they resolved once he drank more.  He finally switched at the insistence of his doctor to Altripa this last year.  He's extremely happy w/ the switch and wishes he would have sooner as he just started to get a visceral gut.  Hopefully the new regimen will improve things, though a reverse is just as slow as the progression. 

Are you on a ritonavir boosted Crixivan or are you 3x daily?

Offline jack

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  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Wondering if anyone . . .
« Reply #2 on: November 07, 2006, 11:43:12 AM »
I took Crix in a trial and for awhile after approval. I had big problems on it. I was in Emergency room twice after drinking alcohol. Extreme pain in lower right abdomen. The worse pain I have ever had.
I lost thirty pounds on Crix and got the whole veiny arms and leg thing going. I lost all my  body hair while on crix.
I also got a very painful condition called "frozen shoulder" in both shoulders. At first I thought it was the result of a ski boarder  landing on shoulder but then I read numerous articles where Drs. were reporting Crix patients with the condition. It takes 18 months for this condition to go away and the middle 6 months are pure hell. I did not sleep at night for at least 6 months and spent every night in a hot shower,got addicted to vicaden,and made some incredibly bad business decisions.
Also had atomic diarrhea all day long. Not my favorite HIV drug. If you mix it with a little liquid Norvir it could be used to torture terrorists.

Offline Oh501sguy

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  • Posts: 113
Re: Wondering if anyone . . .
« Reply #3 on: November 07, 2006, 08:06:35 PM »
Im surprised to hear about azt.  You may want to really watch your regimine.  Aside from that, Crix scares me.  My ex was on it and he had kindey stones really bad.    Please really look into your treatment plan...there are better alternatives.  Only my opinion.   Thanks

Offline aztecan

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  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Wondering if anyone . . .
« Reply #4 on: November 07, 2006, 09:53:40 PM »
Damn Jack, you really had the horrors with Crix didn't you! I had a slight brush with kidney stones, but increased my water intake to 64 ounces a day, at least, plus tea, coffee, etc., and the problem resolved itself.

I am interested in the frozen shoulder issue though. What does that entail or where might I find more info about it? I have painful joints, usually when leaning on them or remaining in a static position too long.

It will awaken me in the middle of the night in severe pain. I thought it was just my getting older so haven't paid it much attention.

Hey Jason, no, my Crix isn't boosted. Two 400mg capsules, three times a day, exactly eight hours apart, on an empty stomach. The regimen is a pain at times, but after more than 10 years, I am used to it.
I was taking the 100mg capsule form of AZT for a long time. So, I took two of those three times a day as well. plus one 3TC twice a day. Now, though, I take the 300mg AZT pill, so I only have to take one twice a day.

Hey Oh501sguy, I have thought of switching, but haven't done it yet. A 10-year success story is hard to argue with. So far, no real problems from the AZT. Like I said, I had "gravel" in my kidneys because of the Crix, but rid myself of the problem by upping my water intake.

I do watch myself and have noticed the lipo showing up quite a lot. I have my labs done every six months or so, and try to keep my lipids under control (a losing battle, I fear).

Thank you all for the replies. They are appreciated.

HUGS,

Mark
« Last Edit: November 07, 2006, 10:04:42 PM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline dgls44

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  • Posts: 69
!
« Reply #5 on: November 08, 2006, 12:34:23 AM »
~
« Last Edit: December 24, 2006, 01:02:08 AM by dgls44 »

Offline schnitzer

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  • Posts: 43
Re: Wondering if anyone . . .
« Reply #6 on: November 08, 2006, 10:52:23 AM »
I used to be on the exact combo 5/6years ago (i forgot) when i was first diagnosed. back then their moto was hit em hard, hit em early...  i guess it was well tolerated, i remember crixivan leaving this nasty aftertaste in my mouth, sometimes i can feel it loddged half-way in my thought. .my goodness, there where just so many pills.

i was drinking every weekend and i guess i haven't been drinking enough water but my pee turned rosey color.  :o   
it was very scarry. i did an x-ray for kidney stones, but i guess they pass on their own.

the key is that you must drink a lot of water!!

Offline clarke

  • Member
  • Posts: 169
Re: Wondering if anyone . . .
« Reply #7 on: November 08, 2006, 03:33:24 PM »
I was on those same meds in the late 90's until I got the "sludge" (that s__t hurt to! )
My late younger brother had bought me a Timex "Data" watch that I could set for the times I needed to take the Crix, exactly every 7-8 hours.  No sleeping in, and always getting up in the middle of the night to pee.  I used to (and still do) drink about 2 litres of water a day.

It will cause havoc with your liver readings, and at times, might make you appear Jaundiced (yellowish-white eyes, yellowish tinge on your skin).

I quit drinking alcohol after my HIV/AIDS diagnosis because so many of the meds go through the liver, and I can't even take Nyquil or any other liquid med that has alcohol in it.

Offline jack

  • Member
  • Posts: 1,578
  • fomerly the loser known as Jake
Re: Wondering if anyone . . .
« Reply #8 on: November 09, 2006, 06:03:56 PM »
Mark, where is the pain? I only realized I had this condition because I was having rotator cuff surgery at the time.
Extreme pain all night long for 6 months.
I was taking crix in a trial and its possible they were giving me higher dose than is given today. I cant remember what dosage I was on.
Really weird when you lose all your body hair and lose 30 pounds. People were telling me I looked like I had aids. I would always try and laugh. My wife and I laugh about it now, it wasnt so funny back then.
My experience with 4 HIV drs is they will blame any sides or pains on everything but the drugs they are perscribing you.
http://www.orthosports.com.au/shouler.html

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Wondering if anyone . . .
« Reply #9 on: November 10, 2006, 10:16:42 AM »
Hey Jack,

My shoulders and elbows tend to "freeze up" when I lean on them for any length of time, such as when propping myself up on them. When I move them is when the pain hits.

The nighttime pain is the knees. Its like they have been overextended, but haven't. When I bend my legs while sleeping, especially when on a hard bed, the pain will often waken me.

I chalked it up to getting older and the scars of a misspent youth. But, if the meds are contributing to this, I would like to know.

HUGS,

Mark

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

Offline Jacques

  • Member
  • Posts: 171
Re: Wondering if anyone . . .
« Reply #10 on: November 11, 2006, 12:57:02 AM »
Hi Mark,

I have been on the same combo for 6 years. I had a few episodes of kidney stones because I was not drinking enough water.  I  had problems my shoulders and  had freesing elbows.

Finally, Crix worked better on my body hair than any wax, chimical or laser ;D

Hugs

Jacques
Jacques
Living positively since 1987
latest lab :july 2010
Undetectable Cd4 1080
43% on Reyataz/Norvir/Truvada

Offline dgls44

  • Member
  • Posts: 69
!
« Reply #11 on: November 11, 2006, 10:40:39 PM »
~
« Last Edit: December 24, 2006, 01:05:56 AM by dgls44 »

Offline joemutt

  • Member
  • Posts: 1,042
Re: Wondering if anyone . . .
« Reply #12 on: November 11, 2006, 11:52:41 PM »
Excellent thread, Mark : maybe we cd all search for 'buddies' on
the exact same combo as ourselves and then compare notes.
I used to take your combo until a few years ago. I had sometimes
a little kidneypain, but nothing dramatic (and I loooove drama) also I cd
pull out all the hairs on my legs with no pain at all.
The thing I hated were the number of crixipills, the jars and the breakage
that occured (I had it sent through the mail) one broken pill could spoil a whole bottle,
awful bitter stuff.
Now I think I m gonna kick the azt, the first seven years were good, last 2.5 yrs :
bodychanges and
now I feel my mild lipo isn't mild anymore.
The big advantage of this combo is the very good numbers
cd4 1440 @ 48 %. Hugs to you Mark,  :-*

Joe (AZT 3TC Nevirapine = Combivir + Viramune, and Lipitor, Remeron, tofranil and a lot of black chocolate)
« Last Edit: November 11, 2006, 11:59:07 PM by joemutt »

Offline aztecan

  • Member
  • Posts: 5,399
  • 29 years positive, 57 years a pain in the butt
Re: Wondering if anyone . . .
« Reply #13 on: November 12, 2006, 10:51:18 AM »
Hey Joe,
OMG, I am with you regarding the broken Crix capsules. UGH! It does spoil the entire bottle, but, with the price of meds, I dust them off and then try to swallow quickly.

It is SOOOOOO bitter!  :(

I had the "sludge" in the kidney. Lots of water later, it seems OK, unless I slack off.

I don't have the body hair issue others seem to though. Of course, I never had a lot to begin with, but it seems to grow back despite my best efforts. ( I dislike body hair because it causes discomfort for me.)

I have this feeling in my gut that the time to switch may be nearing. I don't know why, but its just something I have in the back of my mind.

But, like you said, the numbers are great. But I noticed my percentage has dropped from 42 to only 39. It could just be a blip, especially since I only have labs done twice a year. I guess I'll know more in January.

HUGS,

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

 


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