questions 'cuz about to start meds -- PI-based

[2theleft]

I am a 45y.o. male. I was diagnosed HIV+ in November 2003 (had tested negative in March 2003). My doctor has taken a “wait & see” approach since then, which I have been comfortable with and my health has been fine (occasional cold, flu, sinus infection, etc.). My CD4s have been in the 475 - 575 range since my diagnosis (one drop to 372 in March 2005) and my viral load, which was 50,000 then 70,000 initially fell to a stable range of 5,000 to 20,000 (once measuring at 444) over the past 3 years. My dermatologist just found a KS lesion on my heel. My doctor feels it’s time to start meds (my latest counts are CD4 506, VL 22,000, %age 27%).  He’s recommending an initial treatment of PI, e.g., 1) Kaletra + Epzicom (or Truvada) or 2) Reyataz/Norvir + Epzicom (or Truvada) or 3) Lexiva + Epzicom (or Truvada). I am really anxious about starting…. I am nervous about the “yellowing” side effects of Reyataz and the diarrhea that Kaletra can cause. (I was put on a 30-day “morning after” regimen once 5 years ago with Kaletra (+ Epivir and Viread) and had (sometimes uncontrollable) diarrhea. Nervous/anxious. Any thoughts? (Feb. 28)

[Pippet]

As you can see, I've had some problems starting a regimen.  But don't let that scare you.  I just wanted to say that the Reyataz combo had very minor side effects even though I had to stop due to 'the yellow thing'.  My diarrhea actually got better after starting.  I think it is worth a try.  If you turn yellow (and a lot of people don't) it goes away as soon as you quit taking them.  I wish I could have stayed on that combo.  I guess Kaletra is next for me and I am also worried about the sides.

Best of luck to you,  Pip

modified to add;  Your numbers seem really good.

[tigger2376]

Your numbers do seem very good. Hopefully this will help with any side effects of ANY regimen
you choose.
Stress  doesn't help, as you know, so TRY not to worry. we are all different and react in different ways.
Please let us know how you get on, and try and get as much info as you can from your doc
x

[BriGuyNY,NY]

Hmmm  Usually an OI doesn't occur unless the CD4 is < 200, including KS.  Was the lesion biopsied?  If not, ask him/her to do so, otherwise,  I'd have the T's repeated B4 starting.  As for Kaletra, I've been on it for almost 4 years, both old and new formulas.  The old, was predictably, unpredictable as far as the GI side effects, but stabilized over time.  Have not had ANY problems with the new drug, 2 pills twice a day.  Good luck in your quest...Brian

[2theleft]

Just want to say "thanks" to everyone who responded to me and my questions about starting meds for the first time and which PI-based treatment to go with. The lesion on my heel was indeed biopsied. It is KS. I know, given my numbers, I was suprised.... but everyone is different, and my body's immune system, while seemingly healthy, HIV notwithstanding, is not able to keep KS at bay anymore. A bit of a mystery -- as with so much surrounding HIV and the body's immune system. So, that makes me symptomatic while my CD-4s are over 500 and my VL is under 25,000. I am bummed, but not knowing what impact untreated HIV has on the body in the long term, I think I am ready to get started on meds.

[budndallastx]

Was there reason why the regime will be PI based ?   Did the Genotype tests indicate some type of resistance to NNRTI's?  Personally, I would try to see how you handle the Atripla since it's one pill per day before bedtime.  Sure, it's got Sustiva but most people tolerate it quite easily.  Also, on the Epzicom, be sure to monitor for reactions since some people (including me) are hypersensitive to the Abacavir component of it.

Good luck.

[mjmel]

2theleft,
So sorry to here of the KS. What a shock it must of been to you. So, you are starting meds soon. Is your doctor going to do anything to treat the KS leisons specific?
xxx,
Mike

[2theleft]

Well, tonight I start. So nervous/anxious. Everyone who goes on meds -- for whatever reason -- no doubt has had similar misgivings.  Tonight I will begin taking 1-100mg Norvir with 1-300mg Reyataz and 1-Truvada. As I am treatment naive, my doctor wanted me to start with a PI-based regimen, likely moving me to an NNRTI-based one (Atripla) a few months down the road. While my numbers still remain good, this has nothing to do with genotype/phenotype -- it's just his preferred method/approach. His aim is to drive down my VL fast. Get that under control and hopefully beat back the KS. So, unless the KS remains persistent and/or spreads, the idea is that the combo I am on should do the trick -- no separate treatment for the KS on my heel.  While I am nervous/anxious, the alternative doesn't seem attractive to me either.

[milker]

Hi 2theleft!

well i'm sorry about the news, but reducing the viral load will help, i've read that some people get KS despite a high CD4, but reducing the viral load made the CD4 be able to fight KS and get over it. Don't think yourself as being the "odd one", everybody is different and will have to fight differently. I hope you get recovery from this incident very soon!

Milker

[risred1]

I am not surprised at the recommendation for a PI based 1st and a sustiva based 2nd, as it allows a 3rd move to a PI based, different than the first. My doc has the same idea for me.

But what i didn't understand that you would move to the Sustiva based program in a few months, once you achieve suppression, I would expect you'd stay with that regimen until you "had" to change.

Regardless,

You can treat diarrhea with glutamine. Information on using glutamine to control diarrhea can be found on newyorkbuyersclub.org, there is also a guidebook on thebody.com you might want to look at. Additionally, you may need to change what your eating in the morning with your pills. For example, Coffee and orange juice may be too irritating to consume at that time. You may of course take the pills in the evening, but once again, you will need to perhaps eat basically bland initially. Additionally, I saw a post where someone had a few drinks and it really produced a bad bout of diarrhea. So while the pills certainly can cause issues, exacerbation from things you consume can also trigger bad bouts.

There are the standbys of course that that would be Imodium. But I understand that may only provide some assistance. It may be surprising, but my understanding is glutamine can really calm things down. Dosages as high as 20-30 mg. have been taken over several days to bring it under control. My understanding is then you can back off to say 5mg per day glutamine to keep things calm. I read where a person who forgot to supplement with glutamine, began to have problems again, but after resuming 5mg per day, was back under control.

---
from thebody.com

L-Glutamine and Diarrhea
Oct 9, 2000

I have read in several places that L-Glut is good for diarrhea. The first week should be about 40 grams per day in 4-5 divided doses. What is good for maintenance dose after that and what is your general experience with this?

 Response from Dr. Fisher

 I have had several patients respond quite well to glutamine. Maintenance dose seems to be 10-20 grams daily. You could actually titrate the dose to your own needs. The biggest problem has been reimbursement as most insurance companies in my experience treat this as a food supplement and won't pay for it.

AF
------

from newyorkbuyersclub.org

 Glutamine is used to treat “leaky gut” which results when intestinal tissues are damaged. Glutamine is taken up in cells of the intestine (enterocytes) and then oxidized, strengthening the overall structure. It stimulates skeletal muscle protein synthesis as well and researchers at Case Western feel it may help, as a possible treatment for cirrhosis, to lower the levels of cytokines like IL-1, IL-6 and TNF which are also elevated in chronic HIV infection. This product is principally used to counteract maldigestion in PWHIV.

 Anecdotally, people with protease-inhibitor diarrhea find relief using 30-40 grams per day. Start with about 15 grams per day and increase the dose til the diarrhea is controlled. Each kitchen teaspoon is about 5 grams. A daily maintenance dose is one teaspoon a day.

 Unless you have diarrhea or other signs of malabsorption (and short of the loading dose approach discussed below), a daily dose of about 5 grams a day is probably enough. One concern DAAIR has is that glutamine may readily transform into glutamate--and this could cause problems. Excessive levels of glutamate may interfere with the function of nerves and even block the cell’s uptake of cysteine (which in turn means less glutathione being synthesized within a cell). However, higher doses do seem to be very helpful for those folks suffering from diarrhea or malabsorption problems.

newyorkbuyersclub sells bulk glutamine in 1 kilo jars.

--------

You may also wish to add some intestinal flora via probiotics or a quality, fresh yogurt.

Hope this helps with your initial concerns, and that you get your KS under control. The good side of this is, when you start treatment at or above 350, the tendancy is for you CD4 to increase significantly, as much as double, so while getting the VL down is important, the potential boost to you CD4 should also help get the KS under control.

Additionally, you should probably look to supplement nutritionaly to help boost your CD4 quickly with Acetly-L-Carnintine, Alpha Lapoic Acid and NAC and a broad quality multi...

good luck!

[milker]

Hi 2theleft,

how are you doing?

Milker

[Ant]

Hi 2theleft

How is it going. I am on the same combo as you and switched to it about a month ago. I am not finding it too bad, I do sometimes get yellow in the whites of my eyes but less and less. The side effects are better than my previous combo of combivir and efavirenz which messed with my head more than anything else.

Hope things are settling down for you!

[2theleft]

Again, thanks to all you guys who have viewed and have chimed in with your personal experiences and thoughts. I have gotten past week one on this treatment. In terms of side effects, apart from some occasional stomach upset and rare-but-urgent calls to get to the men's room/toilet, my body overall -- and particularly my stomach -- seems to be tolerating this regimen (Reyataz + Norvir and Truvada) pretty well.  I know it's early days, so we'll see if week two is as favorable. Keeping my fingers crossed. The main effect, controlling HIV, will be demonstrated (or not) in the blood draw I will get on April 12, and, also, if the KS retreats/disappears.   

[milker]

let's kill that KS

if it needs you going to the toilet 10 times a day then be it. Let's kill that bitch.

[2theleft]

   Well, it seems I spoke too soon. Side effect appeared on Wednesday (3/21) into Thursday (3/22) last week. A pimply rash around my knees and up the front of my legs and on the tops of my feet and on my buttocks. No itch, no discomfort, just a lot of small red pimples. My doctor thought it could be the Lamisil I reintroduced into my "pill regimen" late the previous week. He told me to stop taking it, which I did on Saturday. About a week after the rash appeared, it seems to be disappearing.  Other than that, I so far seem to be tolerating this regimen of meds pretty well.

[risred1]

I continue to read good things about Reyataz to the point that you can do a combo of Reyataz and Epzicom to avoid even the Norvir. But if you use Truvada or Sustiva you have to have the norvir to keep the PI levels high enough in your bloodstream.

I hope this works out for you well! Sounds pretty good so far!

[tigger2376]

I've been advised to eat something,preferably fatty, when I take the norvir...best excuse for cookies and bacon sarnies I know!
seriously, these do seem to be hard on your stomach, especially since they have to be kept cold. if you can bear to eat just before,or just after, it may help with the 'bathroom breaks'. the less symptoms you have the better
Best of luck, thinking of you
x

[suzieque]

      Hi,
       Sorry to hear about the KS, glad that it seems that you will be able to control it through taking combo. I have been on several combos (have changed due to side effects, not resistance thankfully) and am now on Reyataz, Norvir booster and Saquinavir ( solely PI based combo due to lipoatrophy). I have found Reyataz pretty easy to tolerate and it seems to be easier on the stomach and fats.  I have had no trouble with the yellowing. Good luck and all the best for the future.
                  Best wishes,
                          Suzie

[SouthSam7]

I thought 300 mg or Reyataz and 100 mg of Norvir was only for treatment experienced patients.  I thought treatment naive patients took 400 mg of Reyataz and no Norvir.  Why did your doc put you on the experienced prescription? 

I've been on PI based regimen for over a year and have almost no side effects.  It's working great for me.
Sam

[2theleft]

Thanks again to those who have commented, cheered, and opined. As suggested by studies and the CDC, the regimen I am on seems recommended, among others, for HAART treatment naive individuals. With Truvada, it's advisable to have the Norvir booster, to minimize side effects and maximize the effectiveness of a PI regime (with a NRTI backbone). The data from studies on non-boosted Reyataz are not very good. So, we'll see in about ten days if this is working as it should be -- when I go for my blood work. My rash lasted about ten days, and so far, 3 weeks on the regimen, I am feeling pretty good and still no signs of yellow.