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Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: yairsinho on March 24, 2009, 12:11:22 pm

Title: It is NORVIR my Destiny?
Post by: yairsinho on March 24, 2009, 12:11:22 pm
 Since I left Sustiva because of behavior and mind troubles....
My Doctor changed my MEDS...from Lexiva, to Kaletra, and now to Prezista...always because I complain of diarrhea, watery stools,
explosive unexpected neeeds to run to the WC.and in some addition the bad putrid odors..from my mouth too!!!!!
My life quality is......BAD  n I prefer not to go out..afraid to fly or even to go on bus trips. No Gym, nor swimming pool

All the food restrictions..toasts, rice,apples,potatoes,..no Coke, no fried food, no sugar,no milk or lactic prods, are OK for some limited time..but after longer than 3 years!!!And of course, those restrictions never ever are a sure way to stop the running.
But sure a way to go fat and weaker!

Damn..all those MEDS:  Lexiva, Kaletra,and Prezista are boosted with the same NORVIR!!!!wich is well known as a diarrhea producer, and a high colesterol booster too!!
PLEASE: Any one to tell me how to get OUT of this NORVIR...(PLEASE don't give me IMODIUM for the run!!)
Title: Re: It is NORVIR my Destiny?
Post by: Miss Philicia on March 24, 2009, 02:19:25 pm
Sorry, but you need the norvir as a booster for the Prezista to work.

Why don't you and your doctor focus more on controlling your diarrhea?  There are many of us who have worse bowel/GI reactions from HIV meds, and yeah I'm a fellow traveller with that issue going on now for more than a decade.  So what's your issue with imodium?  How much of it do you take each day?  I take it 3 times twice a day, so that's 12mg.  I've been up as far as 20mg/day when I was taking Kaletra (I'm on Prezista+norvir right now myself).

When I went on Prezista my HIV doctor had me also start taking a new buffered digestive enzyme called Pancrecarb, which is also on our state's ADAP formulary.  I take 3 twice a day, and it's greatly solved my diarrhea issues and allowed me to decrease my imodium intake to what I stated, though I realize that it's more still than what most people ever take.  That said I have a good friend with such bad GI issues that he even layers a dose of tincture of opium over what I just stated I take, so that's another option for you.

Oh, and though that may sound like a lot of additional pills to take and it does basically double my pill dosing each day over on top of my HIV meds, if you're already taking 8 pills a day like that what's another 12 if it solves the problem?  Not to mention I can even eat a cheeseburger now and not worry constantly about knowing where every bathroom around town is -- I totally relate to what you're saying because I was like that for YEARS, to the point of having to shit in public on a subway platform.  It's very demoralizing and indeed quite mentally damaging when something like that happens, as is the hermitizing at home bit.

So check this out with your doctor and see if it works, but it's not an instant thing... give it a go for a month:

http://www.pancrecarb.com/pancrecarb.htm
Title: Re: It is NORVIR my Destiny?
Post by: newt on March 24, 2009, 02:33:16 pm
No it is NOT your destiny, and your doc is slack for letting this matter run (ahem, no pun intended, soz...) for so long.

I urge you to speak to your doc about using the Prezista with 100mg Norvir. If you change from Sustiva for reasons other than resistance this is deffo on the cards. It's amazing what a difference 100mg v 200mg makes. Plus why didn't your doc suggest Reyataz as an option, this uses 100mg Norvir too (and is once a day, and can sometimes be used without Norvir at all).

On the diet, pro-biotics please, and some fat with the meds, regardless of supposed diet restrictions, fat helps the Norvir get absorbed and reduces side effects.

It is possible the cause is not meds but an infection, and your doc should check this (by testing) or just try 2 weeks antibiotics and see. A range of other things can help:
http://www.i-base.info/guides/side/diarrhoea.html

Also, you can use Isentress, which don't need Norvir, it's an integrase inhibitor, different but effective.

Welcome, btw, and good luck.

- matt
Title: Re: It is NORVIR my Destiny?
Post by: yairsinho on March 24, 2009, 05:42:50 pm
  Thank you all!!
                     And about Imodium, you been taking 3 twice a day!! I already  try.2 twice a day...and it works ..so so...
About that PANCRECARB...tnx Gotta have a chat with my doctor...how come he never told me about it??!!
Thank you Philicia darling..!!
And thank you Matt...you gave me more ideas to chat with my "slaughter".ops sorry my doc..:-) about less NORVIR , 100 instead of 2 times 100.
Nope, no guts infections or parasites around, I passed many tests many times..and all are negative!
Isentress or Rayataz  are coming as later option, as my medical insurance in my Country only gives those meds with some Special Medical Council
acceptance... 
Title: Re: It is NORVIR my Destiny?
Post by: Miss Philicia on March 24, 2009, 06:17:39 pm

About that PANCRECARB...tnx Gotta have a chat with my doctor...how come he never told me about it??!!

It's kind of new-ish, plus it's made here in Pennsylvania so it doesn't surprise me that it is used in clinics and/or is on our state formulary.  Have your doctor read the literature on the web site, and if you do some googling on "HIV Pancrecarb" together you should find study results, etc.
Title: Re: It is NORVIR my Destiny?
Post by: yairsinho on April 10, 2009, 03:02:27 am
Thank you guys!! I take fat snacks with  Norvir  and riced up the Imodium dose,3*2, your advises changed my daily life !// :) :) :)
Title: Re: It is NORVIR my Destiny?
Post by: Jonjons1968 on April 24, 2009, 10:42:41 am
I've been fighting the Norvir battle myself also but I'm Lexivia, Truvada, and Norvir. I not only found myself running to the bathroom but the Nausea, Vomiting sleeplessness (even with Sleep aids)
numbness in hands and feet, crazy night sweats , muscle aches, moodiness and I could just keep going. I have stopped taking the Norvir Only taking the Lexiva and the Truvada, but not sure if removing the Norvir from the combo if I am making the entire combo useless. In the process of changing doctors  so I don't really have any guidance in this matter right now all I know is after removing the Norvir all of the unbearable side effects have went away. My former Doctors answer to any side effects was mental heath sending me off to see if this was all in my mind.
Title: Re: It is NORVIR my Destiny?
Post by: Peter Staley on April 25, 2009, 09:04:46 am
Jonjons -- did you stop the Norvir on your own, or discuss it with your doctor first.  It's not really a good idea, since you could then become resistant to Lexiva and many of the other protease inhibitors.  This would then greatly decrease your treatment options in the future.

There is a Lexiva dosing option without Norvir, but it's only recommended for "people who have never taken a protease inhibitor before."  The dose is two 700-mg tablets of Lexiva, taken TWICE a day (two tablets every 12 hours -- a total of 4 pills a day).

There are also other treatment options that don't involve Norvir, like Isentress, but you should talk to your doctor first before stopping any meds.

Let us know what happens after seeing your new doc.

And welcome to our forums!