Getting over the fear of switching HIV drugs to find the regimen that fits you versus being afraid to switch at all.

  • Posted by a hidden member.
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    Jun 26, 2009 1:08 PM GMT
    A discussion of the choices faced when trying to find the best regimen. Check out the poll below as a starting point for this discussion.

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    Jun 27, 2009 4:14 PM GMT
    I switched regimes in the late 90s from the protease inhibitors to Sustiva. This was due to side effects. My doctor was hesitant (after all the drugs were working), but I was willing to take the chance in order to improve my life.

    No regrets. My viral load is still undetectable, and the side effects are less noticeable.
  • thorn27

    Posts: 214

    Jul 03, 2009 7:29 PM GMT
    when on hiv meds u can have various side effects
    some u notice others dont bother u
    however if and when uve been on the drugs long enough, it is poss for your doctors to say take a break, your nr are so good the drugs arent doing anything for u now
    after a while the virus will pop up its ugly head and then u go back on drugs
    sometimes its the same u had before other times its something new
    keep a eye out for the side effects
    after all not all cocktails will work for u
    its a matter what combination works
    so i say switch if it doesnt feel right, but give it a chance
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    Aug 07, 2009 12:44 PM GMT
    I've recently tested positive and am still talking with my doctor about which regimen to start on. I've heard so many stories about bad side effects, so I've been reading a ton on the Internet trying to learn more.
  • thorn27

    Posts: 214

    Aug 07, 2009 5:28 PM GMT
    all the side effects that are listed on hiv meds are not always going to affect u
    or in a diffr degree
    it is important to find a combo that works for u though
    as u have to live with taking the meds every day
    and all the diffr side effects that u get to deal with at the same time
    often side effects wear off after about 2 weeks(so they say)
    else it might be time to look at a diffr drug
    i know i switched a couple times
    various reasons
  • jcgogo

    Posts: 4

    Aug 09, 2009 3:49 AM GMT
    jjohn23 saidI've recently tested positive and am still talking with my doctor about which regimen to start on. I've heard so many stories about bad side effects, so I've been reading a ton on the Internet trying to learn m ore.COLORED TEXT GOES HERERESIZED TEXT GOES HERE
    Well, reading about the different meds out there is good and a great thing to do, mainly to educate yourself, I've been positive for ten years now this month, and have been on several meds. and unfortunely, you have to try these drugs, but your doctor should have done or should do a genotype test that will tell you what meds you are most likely to be resistant to or not. Either way trust in your doctor and you'll be fine, and most important always talk to somebody about anything that you feel is not right if you need to talk to someone, do it by the way i was off meds completely for about three years, and eventually had to go back on meds, but am proud to say that my last dr. visit i was not detected virul load was under 40 and technically undetected.
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    Aug 10, 2009 8:08 PM GMT
    Here is an excellent source for those dealing with HIV and its side effects and some great sugestions on how to workout with HIV.


    I have gotten help from Nelson and is a great guy to talk to about any issue.

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    Aug 11, 2009 2:52 PM GMT
    I have been on the same regimen since I started HIV medicine therapy , Atripla ( what used to be emtriva, sustiva, and viread, then truvada etc) .

    The only side effect I see sometimes is my triglicerides and cholesterol shooting up if I dont watch my diet. I have been taking fish oil, b complex, and niacin to help the triglicerides.

    When I first started my medicine regimen , I noticed I was getting the pot belly and the love handles. I have since watched my diet to reduce that but my tris still shoot up. My doctor talks about putting me on statins but I really want to avoid it and stick to natural methods if I can. Should I be considering them and not so worried about statins?

    Ocassionally my liver numbers are of concern to my doctor. I started taking niacin to help with that. Is there anything else I should consider taking as a supplement for liver ?

    I have heard here and other sites about HIV+ people on steroids, growth hormone. Is this for wasting or to treat other side effects? Is this widely accepted by the medical field or just by a few who are willing to give new therapies a try?

    Sorry for the many questions, I have always been on the same regimen and have never needed to consider other options really.

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    Sep 17, 2009 3:07 AM GMT
    Hi Guys,

    I'm kind of late to respond to this thread, but I thought I might be able to contribute some of my experiences on HIV meds.

    I've been POZ since 1992, and I went on meds immediately because I had a fairly aggressive doctor who believed if you're below 500 Tcells, you should go on meds immediately. When first tested, I had 482 Tcells, so I started taking AZT, the only medicine that was available back then. For the first 2 or 3 weeks, I felt like I was always about to hurl. However, when my Tcells hit 891 three months later, I recognized the value of taking meds earlier than a lot of other guys.

    I had checked a number of doctors before choosing the one that I was convinced was one of the best in the city, the state, and possibly one of the best in the nation. I know that's not possible in smaller cities or towns, but I believe it's extremely important to find a doctor you can trust completely, one who can dispel most, if not all, of your fears, and answer all of your questions. Another suggestion that worked for me was to learn everything I could about HIV and AIDS so I could have actual conversations with my doctor so I felt more like a partner in deciding the course of my treatment.

    For the next 6-8 years, I took every knew medication that was available because I seemed to become resistant in record time. This was before phenotyping and gentotyping, and there seemed to be a great deal more research and general interest in developing new meds. My Tcells kept sliding downward until I finally dipped below 200 Tcells around 2000, so I officially had AIDS.

    Another step I took within weeks of learning my HIV status was to join a POZ support group that was held at a local church under a program funded by the county health department. When I joined the group, there must have been 70 or 80 guys who attended our twice-monthly meetings. I learned so much from the other guys, but this was back when a lot of the guys infected in the early and mid-80s started dying. Our support group was down to approximately 20 men after 6 years, and 4 years later there were only 7 or 8 attendees because most of the guys who were in the group were benefiting from new drug regimens and no longer feeling so bad, so they kick-started their old lifestyles, going out at night, finding new boyfriends, and dropping the group that had meant so much to them a few years earlier.

    It wasn't until I started reading about "HAART" and "drug cocktails" in 1996 that my treatment seemed to change altogether. I still changed meds frequently but I actually stopped thinking that my lifespan was limited to 10-12 years as one doctor had told me back in 1992. In fact, there were 2 or 3 hour periods when I would forget about being HIV+!

    In late 2007, after 4 years of Fuzeon injections twice a day, I finally asked my doc if I could drop Fuzeon and take Selzentry, one of the first entry inhibitors on the market. I had just become undetectable for the first time in 15 years, and my doc was a little hesitant for me to change meds that were working, but he agreed when I finally convinced him how miserable I was with the Fuzeon injections. Since Sept. 2007, I've been on the same cocktail of Selzentry, Truvada, Norvir and Prezista. I've remained undetectable for the past 2 years and my Tcells have climbed steadily to 323 -- not huge, but I am no longer considered an AIDS patient, according to my doc. That was a huge morale booster!

    I realize this was probably more than you wanted to know about my HIV journey, but finding out all I could about HIV, and reading about current and upcoming treatments made me feel like I was fighting this chronic condition as an equal partner with my doctor.
  • scrumrob

    Posts: 92

    Sep 17, 2009 4:11 AM GMT
    Knowing the side effects is one thing, but choosing drugs mostly on that basis is a bad strategy. Most of the time, the side effects disappear after a while. You have to base your long term choices on how well the drugs work on the virus. There are so many strains of the virus that you have to find the combination of drugs that work best on your strain. It is also wise to get blood work done for viral load at least a couple of times per year. Sooner or later, the virus will form full or partial resistance to a particular drug. The viral load is the best early indicator this is happening. At that time, a genotype should be done on your virus to determine which drugs are losing effectiveness. Once that is identified, your doctor will look at what adjustments need to be done. Some of the drugs are incompatible and sometimes resistance to one drug eliminates the entire family of related drugs. The change might be as simple as replacing the drug that is no longer working or as complicated as changing everything.

    I tested positive in 1995. My doctor and I discussed the pros and cons of starting treatment early even though my T-cells were above 300. I saw no reason to wait until I dropped lower. There were some new drugs just coming out that could be used instead of AZT. I am fortunate in that only two drugs have produced significant side effects that caused my doctor to switch me.

    One of them caused some neuropathy and numbness to develop in my feet, but nothing severe. The other one I took was part of a treatment trial, but I was informed going in what the temporary side effects were, and they were nasty; fever up to 104, fluid retention causing as much as 35 pounds of weight gain in a matter of days although I only hit 20, and it required I administer subcutaneous injections precisely every 8 hours for 5 days every seven weeks. After the fourth cycle, I decided I wouldn't be able to keep it up. These days, treatment involves taking a cocktail sort of like fighting a battle using ground assault, air assault, and marine assault to hit the virus in different ways.

    It becomes something of a chess game. I do what I can to assist the drugs' work by eating and sleeping well and being as healthy in other ways as I can. I never add supplements without consulting my doctor to make sure I am not creating a conflict with one of my drugs. He has put me on Crestor to counter-balance the effects on my cholesterol and triglycerides and suggested later I add a fish oil supplement as well as a low dose aspirin once per day.

    We all made a mistake or had an accident that got us in this situation, but living with HIV is not a constant battle if you have access to health care. It requires choices and occasionally requires us to suck it up for a while. When I pack for travel, I don't even think much about it. It is part of packing toiletries with one exception. My meds always go in my carry-on. Never, ever pack your medications in your checked luggage. The point is, it becomes a habit like taking a piss in the morning. You just do it.

    It also helps that I lived in an advanced society where health care is accessible.