Slamming Treatments!

[risred1]

I noticed two posts in the last couple of days that more or less are really negative about the treatment experience. These comments are being made to people who are concerned about going on treatment and if anything need a bit of reassurance that they are not going to be turned inside out by the meds.

Now with sympathy and understanding that meds don't all work out for us, that there are going to be bad reactions in this forum community. But I would hope that instead of slamming today's front line treatments such as Sustiva Based or PI based treatments, understanding that some are having a bad time on these meds, please keep it in perspective that ones own experience is not necessarily a shared one with all meds takers. Just because those who do well on treatment have the decency to not rub it in the face of those who do not do well, does not mean that we need to be so literal and essentially scare those who are on the border and are ready to make the choice of taking meds to treat the HIV.

Of course this is just my opinion, and I truly don't mean to scold anyone of us with HIV or AIDS that are having issues. Part of the reason we talk on these forums is to deal with our issues. It is just a reminder that ones experiences should be kept in that perspective. It is fine to say that you had issues with the treatment and what they were and what to look out for, its is quite another to state "expect the worst" and Absolutely do not take Sustiva. That is projecting a bit beyond ones own experience.

Thanks!

[allanq]

risred1,

I'm glad you brought this subject up.

I see people here who are terrified of starting or changing treatment because they've read such scary reports from those who are taking particular drugs. And you're right, Sustiva seems to be the drug that is most frequently cited as having terrible side effects.

Sustiva is known to have psychiatric side effects in some people. However, a look at the data shows that most people on this drug do not have these side effects. As you point out, people who are doing well on Sustiva generally don't post about how they are not having problems with Sustiva.

I had to stop Truvada because it was causing kidney problems for me. Does that mean that people should be petrified at the thought of taking Truvada? Of course not. I just happened to be one of the minority of people for whom Truvada produced that side effect.

This is not to say that all drugs are created equal. I think that with some drugs, the probability of side effects is simply too high for the drug to be considered in a first-line drug regimen. I consider Zerit to be one of these drugs because of its well-documented association with peripheral neuropathy and lipodystrophy.

People's reactions to HIV drugs (or any drug, for that matter) are very individual. There is always some risk of side effects, but it's important to put it into perspective. I've started lots of new drugs during my tenure with HIV, and I always try to start by expecting the best--that the drug will help control the virus in my body.

Allan

[antibody]

Viramune is started at half a dose to avoid rash then up to a full dose once the body is used to it. what people have to realize is there is a breaking in period where it takes a little time for your body to process and get used to the drugs. every combo, every drug. the first time you take it you're going to notice it. it is when these side effects are persistent that the combo should be changed to something more tolerable. so people need to be a little patient before making assumptions a combo is causing problems.  so i know people are scared of the initial effects of a combo. i was terrified but got past it.

[bmancanfly]

thanks risred !

As someone about to start meds it's good to hear both sides.  My sympathies to all those having drug side effects.  But sometimes I leave here feeling very depressed.

[ARMANDO]

I WISH I HAD KNOWN WHICH DRUGS TO STAY AWAY FROM WHENI FIRST STARTED ON MY TREATMENT.I DEFINITELY KNOW WHICH DRUGS TO STAY AWAY FROM NOW FROM PERSONAL AND UNPLEASANT EXPERIENCES.IT'S BEEN ALMOST 20 YRS SINCE I WAS FIRST DIAGNOISED AND IT HAS BEEN A LONG  AND SOMETIMES VERY SCAREY JOURNEY,BUT I'M STILL HERE,STRONGER AND BETTER THAN EVER!!

[Miss Philicia]

In the same respect, those of you NOT on any HIV treatment yet should keep in mind that people are going to post bad experiences more than good ones -- that's just the nature of a web based forum I think.  If one is having a horrendous experience with Sustiva imagine how easy it is to get on teh intranets and rant.  I'm sure if you're about to go on treatment however it's really not very easy to read some of these posts, but it's all anecdotal and if was affecting 90% of HIV patients in a similar fashion I'm quite sure it would not be a first line regimen. 

I've had incredibly good experiences with my current treatment over the past year, and even though it includes Fuzeon which I must inject twice daily I've repeatedly shared my good news of it and experience in an attempt to show that there's a net-positive trade off with the inconvenience of the dosing with how there are NO side effects for me.

The bottom line for treatment inexperienced people using the forum is would you rather know of the potential side effects or not?  If you don't want to know all the personal stories about it you may want to consider limiting your time on a web forum such as this until you are on treatment and outside of the first couple of months when reactions can occur, if you are predisposed to becoming paranoid and not keeping everything in perspective.

[budndallastx]

As Philly indicated, human nature is to talk about the bad and never the good.  The best advice for someone who's about to start meds is to READ, READ and then READ some more.  The long and short of is the better informed you are, the better the decision you'll be able to make concerning your treatment options. 

My personal experience is one where I was totally freaked out about the drugs but each of us is unique and will respond differently.  What's a good experience for one may turn out the total opposite for someone else.  There are options so if one regiment does not work you can try something differently.

[SASA39]

Regarding Sustiva : on one hand it can cause a  dreams that are hot so good at all. On the other for a starters with a really low CD4 count ( 58) it is a first regimen.Bad news is that if one develop a resistance to Sustiva , that could lead to drop all other NRTI due to a cross  resistance.So endure on Sustiva as you can and only then move further.

[budndallastx]

Regarding Sustiva : on one hand it can cause a  dreams that are hot so good at all. On the other for a starters with a really low CD4 count ( 58) it is a first regimen.Bad news is that if one develop a resistance to Sustiva , that could lead to drop all other NRTI due to a cross  resistance.So endure on Sustiva as you can and only then move further.

Switching from one non-nuke (e.g. SUstiva) to another non-nuke does not mean you'll develop a resistance to the the entire class of non-nukes (Sustiva, Viramune, etc.)  It is true if a resistance develops to the non-nuke class all the drugs are not available.  THere appears there may be  howeverbe an exception with TMC-125 which is showing efficacy in the trials to working for those who are resistent to other non-nukes however results have not been published yet. 

[Rusty]

Hi all

I must admit some of the posts I have read about starting meds are borderline scare mongering. These meds are intended to nuke the virus to destruction and thankfully we have them to take these days, and there are some fantastic drugs available now keeping side affects to a minimum. I have been pos for 23 years and during the dark days when there were no meds at all available I would have taken anything.  These meds effect individuals differently there is no rule of thumb for any of them. Sometimes you can make yourself believe things are happening to you just because you have read about it previously, or the first sign of a headache or dizziness is not always connected to new drugs. You have to give any drug at least six weeks to bed in until your body excepts them. I have never taken anything that has given me severe reactions and I have taken most drugs available. Although T20 injection site reactions are a bitch but most newbies are miles away from having to use that stuff.

Lets all be thankful these drugs are here for us to use.

[blondbeauty]

Well then, to be fair, I think I should insist on the zero side effects I am having with Sustiva.

[aztecan]

Having been a guinea pig in 96, I will just echo what Rusty said. I said in another thread discussing Sustiva something to the effect that some people do very well on it, others don't.

I probably sounded cranky. Don't mean to, but Sustiva does it to me. Sorry.

Others here have talked about Crixivan. One person went through hell with it, including losing all his body hair, nausea, vomiting, diarrhea, etc.

I took it for 11 years with few difficulties and just switched because, after all these years, I am now noticing some serious body shape changes.

I am hoping that in another three or four weeks, I will be completely used to Sustiva. If not, then I will probably wander back to the PIs, because Viramune in contraindicated for most in my circumstance.

The bottom line here is there are enough meds out there now that people can find a regimen that works for them and, through it, keep the bug at bay. I think sometimes we forget that is the goal here.

No matter how scary the side effects may be to the treatment naive or those about to start, the worst of them is still a hell of a lot better than what can happen without the meds.

I try to keep that at the back of my mind. It helps me deal with whatever comes my way.

HUGS,

Mark

[Miss Philicia]

I think this idea that we should minimize our discussions of side effects on a web board because of some "Think of the Children" attitude is horribly offensive.  I wish I'd had the good fortune of a web board like this when I first began seeing lipoatrophy effects a decade ago, but alas I did not have that luxury.  In fact, at the time doctors didn't even seem comfortable assigning it a name, so I sat there horribly paranoid and thinking I was having hypochondriacal tendencies.