POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: bubble on June 04, 2007, 12:43:02 pm
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I've been on Kaletra/Truvada for about 9 months now. I've had really no short term side effects. Over the last few weeks i've been having diarrhea pretty frequently. I know Kaletra can cause this and i'm wondering if i can develop this sort of side effect months into treatment?? it's not fun.
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I've been on Kaletra for over two years. Yes, you can. And from my experience, I'd say to expect it to be an ongoing thing to watch out for. I generally keep a supply of Immodium on hand to counter the Kaletra attacks. They can just come and go periodically. It hasn't been something that my system has gotten used to and has diminshed over time.
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Let me know when you get up to 10 2mg imodium tablets per day!
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I'm on the same combo for a year and 5 months now and I still have the diarrhea. It's not as often as early last year when I started but it's still there. I notice when I take mulitvitamins I have less diarrhea. I was taking KPax but I think it hurts my stomach now. I've switched to Perfect Prenatals and it doesn't hurt my stomach. The diarrhea is one of those wacked side effects. Oh, I also try to up my acidophilus intake when the diarrhea kicks in.
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yes i was taking K-pax as well but now it seems to make it worse!!
still you are all saying that you've had diarrhea this whole time. My just started 9 months into treatment. i think that is strange!!!
does PHILLY267 really take 10 imodium tablets per day??? what the fuck??
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bubble, I'm no longer on Kaletra. I was on it from the time it was first approved in late 2000/early 2001 until a year ago, so slightly over five years. I've always had to take a LOT of imodium for all protease inhibitors, though once I was up to 10 things were getting extreme.
Even now on a simple Norvir booster (which is a small 2 tablet/day dosing) I have to take 6 imodium tablets plus 6 pancrecarb tablets even to maintain some sort of equilibrium. From what I see on this board however I think my body's reaction to the soothing diarrhea effects of this class of HIV medication is way outside the norm. Also, my doctors think this reaction has helped cause my resistance to that entire class of drugs though I personally think it was also greatly effected by my first PI I went on in 1997, Invirase (Saquinavir), as the first formulation of this medication was shown to be quite faulty and cause problems which is why they had to redo it due to bad absorption in early adopters. I do not have, and have never had, adherence issues so I'm quite sensitive to the public admonishments that patients experience treatment failure are lazy slackers in that department.
There were times when the diarrhea was so bad I had explosive experiences of defecating in public on busy NYC subway platforms... it was ever so enjoyable and helpful to my mental health.
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I am also on Kaletra. My experience with diarrhea does not sound as bad as yours, but I nevertheless needed to do something to correct it. I decided I wanted to try a supplement-based cure, and I've had good results with Calcium (2x500mg twice daily) and Acidophilus (2 capsules twice daily).
If you're wary of stopping the Imodium cold turkey, you can also try adding Pepto Bismol tablets (2 capsules twice daily). This will turn stools black, but it will really calm things down.
I suppose finding the regimen that works for you will involve a bit of experimenting. Best of luck.
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I should add that this allowed me to decrease my imodium intake (please note that I am not a pimp for this product even though I routinely pimp for it on these boards!). I suggest this product as it's paid for by ADAP (at least in my state) and it's either natural or based on something natural (evidently you can buy it in health food stores too, though I've not personally checked that), and it treats the cause, not just the symptom. Imodium is only treating your symptom. Pancrecarb also, as an enzyme, increases absorption so your body is making the most of the HIV meds you are taking. This is very important in MY case as obviously from my posts above my body was not handling protease inhibitors well over the long-term and thus I build resistance to it. Avoid this fate at all costs my friends. Life becomes ever so complicated when you don't benefit from an entire class of HIV meds... TRUST!
http://www.digestivecare.com/pancrecarb3.htm
PANCRECARB® disperses with food in the stomach and delivers bioactive buffered pancreatic enzymes into the intestine. The active enzymes hydrolyze fats into glycerol and fatty acids, proteins into peptides and amino acids, and starches into dextrins and maltose.
PANCRECARB® provides safe and effective digestive enzyme supplementation therapy, which may result in a rapid, significant reduction in abdominal pain, cramps, flatulence and stool frequency associated with poor digestion of foods.
Digestive enzyme supplementation therapy is known to help intestinal regularity and general health.
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Hey Philly,
Don't know if you (or anyone else for that matter) has tried Motofen for diarrhea. Quite frankly it is the best medicine I have ever used for the problem. It doesn't make you drowsy like Lomotil.
Be careful with it at first though. I actually take a 1/4 -1/2 tablet per day. If you take too much, it can also plug you up.
I have never taken Pancrecarb. You have had good luck with it? I have been having some cramps in my right abdominal flank lately after eating and taking meds. I hope I am not developing pancreatitis. I see the doctor next week.
--JJ
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Motofen has opiates in it which I try to avoid, as I often have allergic reactions.
Like I state above, Pancrecarb treats the cause not the symptom and increases absorption. THIS is why I take it, and yes it has helped me. I've been taking it now for 2 years.
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Philly, I thought Motofen was chemically related and did not actually include opitates. I have to take so little for it to work, it has never been a problem. I used a different brand of enzymes several years ago. I might give Pancrecarb a try and see how it works.
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Really? I did a quick google and it said it's an opiate but has some additive to prevent misuse. My problem is not potential substance abuse (though it probably WOULD be if I didn't vomit so profusely! :)))) but the actual molecular structure (I guess).
I suppose I could try it, as my reaction can vary with that class so I will keep this in mind in the future, jjmcm so thank you anyway. What I'm taking now is working even if it's 12 different pills/day. I already have to inject myself twice/day and take about 12 other HIV pills so throwing back more for GI problems doesn't particularly bother me.
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Philly, I know this isn't exactly the same topic here. I know we both have been on Fuzeon for a while. (19 months for me) Have you been on it long enough to develop scar tissue in injection site areas? While I can still get the needle in, sometimes it is almost impossible to depress the plunger on the syringe. Regardless, injecting under these circumstance guarantees a VERY nasty response.
I recently had to stop injecting in my abdominal area at least for the time being because of difficulty finding any place that did not swell up the size of an egg. The chest is still fine, but the sides of my butt are also beginning to get difficult. My partner recently started injecting me on the back which is tough because I have so little fat.
I tried a couple of places just below my waist on the upper most part of my thighs with reactions that last about 5 or 6 days. I have never been able to inject the thighs because of the extreme problems there due to having nothing more than skin and muscle. The daily drag with trying to find a suitable place has recently become trying.
I am Fuzeon fatigued. I love the results, but hate the process...
I would love once a week shots or even once per day would be better.
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jjmcm, I use the Biojector not the needles, and have done so since I started fuzeon 12 months ago. I do get scars tissue build up, but they're tolerable most of the time. There might be five days per month where I feel like stopping, but as long as it stays that minimal I can deal. I have no way to compare it with what you are experiencing, but I do have a friend who did the needles for a couple years before switching to the Biojector and, as he's stayed on the latter I must assume it's slightly preferable.
I know the FDA approval on this has been delayed, or was when I last heard someone from Roche talke about it a couple of months ago. I was able to get on a drug trial where this device was included and though the trial ended in October Roche must have something set up here with Bioscript because as long as I go through them I'm able to get the special Biojector syringes. Not sure where you live but maybe you could hunt around with your doctor and see if there's some way to try this method out from Roche.
As we are off topic now if you need to PM me.
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Oh, another thing. When I eat bananas it helps.
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well i saw my DOC today and he is checking me for parasites but he thinks its the meds. he says there are usually 2 types of people....
1) have a reaction to Kaletara in the first week or 2 then pretty much have diarrhea consistantly while they are on it.
2) (me) get it after about 6-10 months of treatment, get it worse and then have it less frequently... we will see.
I will mention pacrecarb etc to him.
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bubbles: becareful with the diarrhea. i eventually stopped this treament.. not because of the dirrrr but because my DTM levels were low and the doc didn't want to increase dosage. the dirrr went on for 3 months, something changed in my lifestyle and i lost a lot of weight (-5%) i'm already a small guy to start off with.. everybody was asking what's wrong with me? the doc perscribed lomitil, kinda like immodium... but once in a while, i'll have to stop whatever i'm doing and run to the bathroom.
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Yes i am small too and i am worried that my body isn't going to absorb food properly now. i have lost only about 4 pounds so far but i am very afraid.
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Yes, well "fyi" I'm of slim build too and I had a major wasting episode while on Kaletra. It was so not pretty going from 173 lbs. (I'm 6 ft) of gym muscle to 142 lbs. of skin and bones while continually being on the crapper. Now, I can't rightly blame the Kaletra really, but it certainly did not help. I'd had a less severe wasting episode (say 10 lbs less severe, but still substantial) a year prior to going on Kaletra, so that's why I indicate the blame is probably more on simply general effects of HIV infection.
People need to monitor their body weight. If you see yourself dropping too quick (there's a fine line between being a hypochondriac and actual wasting of course) say over 10% of your normal weight then call your doctor and consider testosterone therapy -- it does work. And it doesn't mean you have to stay on it forever, though I did stay on it for a significant amount of time (4 years). I've been off testosterone for 3 years and not had another weight loss.
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I have had diarrhea problems for years as a result of my meds. My doctor suggested Imodium, which I use on occasion, but it causes problems because it makes your body absorb the moisture out of your stool. This gets a little graphic to explain, but with regular diarrhea, at least things all shoot out with the liquid, a quick wipe and you're finished with it. With light dose of Imodium, things for me turn to a thick sticky sauce that is difficult to clean. Hygiene became a worse side effect. With regular dose of Imodium, I go from diarrhea to constipation, with no moisture to help move the stool.
I accidentally came across a solution that has been a godsend for me. I am not a doctor, so I'm not saying this is the answer for everyone, but it sure has been for me.....
***I take one fiber tablet along with my other meds.*** It regulates my bowels and gives the stool some substance without removing all the moisture. With high fiber, my constitution has been closer to normal. If I drop the fiber, the diarrhea comes back.
I don't know why fiber is so dang expensive to buy. The cheapest source I have found is to buy bulk 1000 count bottles of tablets at Costco (I'm sure also available at Sam's Club, BJ's and other membership warehouses)
Give it a try and let us know your results?
If any doctors out there have a problem with adding high fiber to diets of Pos folks, please post.
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When I was even up to 10 imodium/day I still was never constipated.
*sigh*
I've already had 3 bowel movements today since 9am.
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DARN !
Y'all make kaletra sound like the worst thing to take for hiv / aids .
I have been on if now for the past 7 years and haven't had any side effects from it ( other then the side effects I brought on myself which once delt with made life return to normal ( OK so I was smoking 4 packs a day and always had a dry mouth is why I had diarrhea and was constantly hitting the john to go from one opening or the other and once I realized that the smoking of that many cigarettes was the cause of my having to do number 1 or 2 things constantly went as I said back to normal .
But now even after all these years that I have been taking meds ( since 2001 ) I havn't had nearly any of the side effects that are told of on the meds phamplets in the med's respective boxes .
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I am also on Kaletra/Truvada combo (and Invirase) and I started taking once a day fiber supplements that work. A nurse practitioner told me to try it several years ago and I could not believe how quickly my problems went away. When I told my ID about taking Metamucil, he had quite a pensive look on his face(as though he couldn't believe it) but said to do whatever it takes. I also am lead to believe that this is all something to do with malabsorption. I think the tablet forms of fiber are more expensive, so try to buy the soluble fiber, and not name brand. The Costco brand is super cheap. Also, make sure you are following the right directions on these containers (as a fiber supplement not as fiber laxative---thats all we need!!). Also there is such a thing as too much on the vitamins. I see a rather homeopathic DO for intravenous vitamins and minerals, and he told me that too much vitamin C will bring on bowel issues.
Also, eating frosted mini-wheats for breakfast doesn't hurt.
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I've been on Kaletra/Truvada for about 9 months now. I've had really no short term side effects. Over the last few weeks i've been having diarrhea pretty frequently. I know Kaletra can cause this and i'm wondering if i can develop this sort of side effect months into treatment?? it's not fun.
>:( I have recently started a kaletra/truvada regimine; the diarrhea is no joke some days it seems like you are one with the porcelin (haha) but hey I know what you mean about it.
Yes the diarrhea never leaves just remember to ask your doctor about keeping you with a lifeline to immodium. I found it counteracts the attacks of Kaletra.
I would like to keep in touch with you and everyone else that is on Kaletra so that I too can gain more insght.
Hang in there is does get bearable.
Peace to you
Sweetness06
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philly267-I was just reading through the diarrhea/Kaletra stuff and noticed you talking about Fuzeon injections - I work with some people on the Fuzeon and our drug rep has provided a small vibrator that they use on the injection site for just a few minutes after each inj. and they are not having any problems with site reactions anymore ! Just thought I'd pass that along, the vibrators have made the difference in two people being able to continue the Fuzeon. Hope this helps.
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I had problems with diarhea from the start when I began Kaletra. As soon as my doctor took me off of it (my liver didn't like all my drugs so I had to stop ALL meds for almost a year and dropped from CD4 of 800 to 300). I TRIED Immodium and everyone's system is different so perhaps Immodium might be a good resolution...in my case, it had the opposite effect and I wound up feeling like a Macy's Day Parade float! My doc even suggested half dosing, but my body overcompensated even with half dosing. One thing I did find out eraly on (pre-Kaletra) was that specific foods helped - in particular Stove Top Stuffing and oatmeal...they worked for me to a degree. Good luck! Paul
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philly267-I was just reading through the diarrhea/Kaletra stuff and noticed you talking about Fuzeon injections - I work with some people on the Fuzeon and our drug rep has provided a small vibrator that they use on the injection site for just a few minutes after each inj. and they are not having any problems with site reactions anymore ! Just thought I'd pass that along, the vibrators have made the difference in two people being able to continue the Fuzeon. Hope this helps.
Thanks, but it was the poster called "jjmcm" that was having that issue. Still, that said, we had a Roche representative at our fuzeon support group just 2 months ago and she did not mention this to us. If you could provide some sort of more detailed link about this I would appreciate it, if more for the other people on this board who are on fuzeon. There are a handful.
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i was on kaletra for one miserable year ! the ceramic throne was my best friend ! (no joke) .
so i went to my hiv dr. & said i had enough diarrhea ! she switched to reyataz & norvir .WHAT A RELIEF THAT WAS !!!
then i started eating rasin bran ,& more veggies. i havent had diarrhea for 6 months !! or gas for that matter
my bum doesn't work the wayit used to. well atleast i can go for a long drive & not have to worry where the next toilet is !
some times we have to be our own drs. . iv'e also have a rash thanks to truvada.
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I've been on Kaletra since 2001. I had really bad diarrhea at first but it got better with time. It still gets me once in a while.
I noticed a few of things with me. I can't tolerate milk anymore, even a latte from Starbucks will send me running to the porcelain goddess and the gas is just unbearable. Also, no more alcohol, I can have some beer or wine with a meal but I get very sick if I have just a few drinks.
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ugh. this post is seriously freaking me out and giving me nighmares!!! These horror stories....
i was fine for so long and now i'm trying not to stress out about this. no diarrhea today. Yogart seems to help me too. I will try the fiber. the malabsorption thing freaks me out more that the diarrhea.
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bubble, my malabsorption issues are definitely more the exception than the rule I think though I have met one other person in my support group that experienced the same thing leading to PI class resistance. His situation however is still ongoing even though he's now on fuzeon and they now have it diagnosed as some hereditary thing. It's so bad he can't even eat out in restaurants the poor thing.
If it's not a daily thing I'd not label it frequent, but sporadic. Don't become so afraid that you start not adhering to your meds... that is a worse decision to make. Does imodium taken as needed not work?
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How about using Glutamine for Protease induced Diarrhea?
From New York Buyers Club.
NAME: Glutamine
DESCRIPTION: Amino acid
L-glutamine is the most abundant amino acid in the body; it participates in many metabolic reactions in the body, and is predominantly synthesized and stored in skeletal muscle.
L-Glutamine is classified as a semi-essential or conditionally essential amino acid - meaning that under normal circumstances, the body can synthesize sufficient amounts to meet physiological demands. However, there are conditions where the body cannot do so.
L-glutamine has come to be regarded as one of the most important of the amino acids when the body is subjected to metabolic stress.
Available by prescription, also — New York state Medicaid covers it, for example.
FUNCTION: Positively impacts gastrointestinal tract function - improving digestion and helping decrease intestinal permeability - boosting the digestive system's nutrient absorption.
Glutamine is used to treat “leaky gut” syndrome, which results when intestinal tissues are damaged. Glutamine is taken up in cells of the intestine and then oxidized, strengthening the overall structure.
SOURCES: Small amounts of free L-glutamine are found in vegetable juices and fermented foods, such as miso and yogurt.
DOSAGE: Typical doses for those with cancer, AIDS, trauma, burns, infections and other stress-related conditions range from 4 to 21 grams daily.
Also used for chemotherapy- or radiation-induced stomatitis: (inflammation of the mucous membrane of the mouth) doses of 2 to 4 grams twice daily or 2 grams four times daily - dissolved in water and used as a swish and swallow.
DATA: Glutamine, HIV meds, and diarrhea: Clinical studies have demonstrated that people with protease-inhibitor-caused diarrhea find relief using 30-40 grams per day: start with about 15 grams per day and increase the dose until the diarrhea is controlled. For those using the powder form, each kitchen teaspoon is about 5 grams. A daily maintenance dose is one teaspoon a day. Take three times per day before/after or at the very beginning of meals for it to work effectively.[/size]
CAUTIONS: Those with liver or kidney problems should exercise caution in the use of supplemental L-glutamine.
FOR MORE
INFORMATION: Physician's Desk Reference's entry on L-glutamine provides solid information.
Lyn Patrick, ND (Doctor of Naturopathy), in Alternative Medicine Review, offers a comprehensive and well-documented overview of the use of several supplements in "Nutrients and HIV: Part Three – N-Acetylcysteine, Alpha-Lipoic Acid, L-Glutamine, and L-Carnitine"
RELATED
PRODUCTS: Glutamine capsules(NYBC) Each bottle, 100 capsules. Each capsule, 500 mg
Glutamine Powder - bulk (NYBC) Each ziploc bag, 1,000 grams of powder ( 1 kilogram / 2.2 pounds). Each quarter kitchen teaspoon has 700 mg.
PRODUCT NOTES: Suggested use (of Glutamine Powder) is a quarter teaspoon (700 mg) in juice 1–3 times a day, between meals. However, some PWHIV are using a loading dose of up to 9 grams per day for a month to six weeks, and then tapering it down by 50% in the hopes of reducing infections, increasing absorption and lessening severe inflammation along the GI tract. Higher doses—up to 30+ grams per day—are being used for weight gain and/or very severe intestinal inflammation. Many mix their amino acid powders together or put them in their protein powder.
DISCLAIMER: These statements have not been evaluated by the Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease.
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I'm actually doing okay for now. i haven't had any diarrhea for a couple of days and i'm just eating yogart. the thing that worries me is that my shit is kinda softer and is floating so i heard that is a sign of not absorbing fat. i've lost a couple of pounds and don't want to lose more since i'm pretty skinny to begin with. this is only my 2nd year with HIV so worrying about PI resistantance is not something i can even deal with. I already picked up a non-nuc resistant bug so developing another resistance is too much to process.
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*Bump*
I started Truvada + Kaletra a few months ago and have had diharrea since then.
There was a stage where it completely went away, Bearby said that when he stopped smoking the diharrea went away the same is true for me.
I swapped to electronic cigarette for 2 months and the diharrea stopped on day 2 and was gone until I started smoking cigarettes again. I need to get a new atomizer for my ecigarette.
If you smoke cigarettes and experience diharrea try the ecig, worked for me :)
The positive part of having diharrea is you never get constipated :)
*wipe* *wipe*
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Eating full cream yogurt works. Been doing it for about eight years, and solid, regular stools are a pleasure. :) Far cheaper than any medications you can buy, and delicious too.
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I'm considering a shift to Kaletra (and AZT) from Abacavir and Reyetaz (both combos with tenofovir), but I'm scared about the side effects - which is how I found this thread. Searching for Kaletra and diarrhea. Seems like it is pretty horrible, and as I currently have no side effects, I hate to change. Alas my current meds cost $600/month, while the Kaletra/AZT set would be nearly free.
I'm curious, why would anyone be on Kaletra if it has such bad side effects? Is it for financial reasons like me?
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I'm considering a shift to Kaletra (and AZT) from Abacavir and Reyetaz (both combos with tenofovir), but I'm scared about the side effects - which is how I found this thread. Searching for Kaletra and diarrhea. Seems like it is pretty horrible, and as I currently have no side effects, I hate to change. Alas my current meds cost $600/month, while the Kaletra/AZT set would be nearly free.
I'm curious, why would anyone be on Kaletra if it has such bad side effects? Is it for financial reasons like me?
Because lots of people don't have bad diarrhea from Kaletra.
Remember, people usually post because they have a problem, not because they don't have one.
A (whose Kaletra diarrhea was manageable through diet after the first week or two)