Transcript of The Body's Live Chat on Changing HIV Meds With Dr. Paul Sax
Sponsored by Gilead Sciences
December 5, 2005
This is the fifth chat that The Body has moderated; to see transcripts of previous chats, click here.
Chat Room: Thank you for joining this live chat at TheBody.com! During tonight's chat, Dr. Paul Sax will answer your questions about changing your HIV medications -- an important topic for many people who are experiencing side effects or drug resistance, or who simply desire a regimen with fewer pills.
Room is moderated.
Moderator 1: Thank you all for coming to The Body's live chat! In tonight's chat, we'll be talking about options for people who are considering a change in their HIV medications.
Our speaker for tonight's chat on changing your HIV meds is Dr. Paul Sax, a highly regarded HIV physician currently practicing at Brigham and Women's Hospital in Boston, Mass., and a professor at Harvard Medical School.
Dr. Sax, it's an honor and a pleasure to introduce you as our chat speaker tonight. Is there anything you'd like to tell everyone about yourself before we get things underway?
Dr. Paul Sax: Hi all, happy holidays! I am Clinical Director of the HIV Program at Brigham and Women's Hospital in Boston (more snow expected tonight), and an Associate Professor of Medicine at Harvard Medical School. I've been involved with HIV care since 1990, and spend my time divided about equally involved in patient care, research, and teaching. Glad to try and help answer your questions!
Moderator 1: Thanks, Dr. Sax! With that, I think we're ready to start answering some questions. Here we go! (Remember: This is a moderated chat, so you won't see your question in the chat room until Dr. Sax answers it.)
Moderator 1: Please note that, although Dr. Sax is an expert on HIV treatment, the answers he gives tonight are only his opinion. Treatment decisions are rarely cut-and-dry issues, so be sure to talk with your healthcare provider before making any change in your HIV treatment!
Original message from elpaso49: What do you find is the most common reason that patients are changing meds?
Reply from Dr. Paul Sax: The two most common reasons for changing medicines are side effects and treatment failure. When you change meds due to side effects, so long as your HIV viral load is undetectable, you can usually just substitute something else for the offending drug. When the reason is treatment failure (viral load rebounds), then you should get a resistance test done first.
Original message from janedoe: Is it a good idea to switch meds every once in awhile in order to prevent long-term toxicities?
Reply from Dr. Paul Sax: We don't recommend any sort of routine switching of medications per se to prevent long-term toxicity. But some people should consider changing treatment, even if they have an undetectable viral load and a good CD4 cell count, as current therapy is considerably less toxic than when the first generation of combination antiretroviral therapy was released in 1996. For example, there are still some people receiving regimens that contain d4T [brand name: Zerit; also known as stavudine] -- especially if given together with ddI [brand name: Videx; also known as didanosine] or full-dose ritonavir [brand name: Norvir], I strongly suggest they change to something safer.
Original message from looqin4info: Hi, Dr. Sax. I'm slowly losing weight (not sure if from meds or not) and wondering if there are any current meds, or meds in the pipeline, that will address this?
Reply from Dr. Paul Sax: Weight loss is an important symptom to get evaluated thoroughly. Some common causes include hormone problems (such as low testosterone levels or high thyroid levels), low-level infection, or even your HIV meds themselves. Among the HIV medications, the ones with the highest so-called "mitochondrial toxicity" are most strongly associated with weight loss -- they include all the "d" drugs (d4T, ddI, and ddC [brand name: Hivid; also known as zalcitabine]) and also, to a lesser extent, AZT [brand name: Retrovir; also known as zidovudine]. If you're on one of these, there may be a switch that could be beneficial. As for specific medications to address weight loss, it depends on the cause: Marinol [generic name: dronabinol] may be helpful for nausea and Megace [generic name: megestrol] for poor appetite, but the key is generally getting at the cause!
Original message from Paul: Hi. I've been on efavirenz [brand name: Sustiva, Stocrin] (600), didanosine (400), and lamivudine [brand name: Epivir; also known as 3TC] (300) for over three years now. My viral load has been undetectable all along and my T-cell count has varied between 200 and 370. I recently switched the didanosine for tenofovir [brand name: Viread] in the hope that this might reverse my surface fat loss. But I get strange dreams a lot and we think these come from the efavirenz. Is it worth considering a switch to nevirapine [brand name: Viramune], or something like that, to replace the efavirenz? (I don't want to use abacavir [brand name: Ziagen] as I think I have a reaction to that.)
Reply from Dr. Paul Sax: Vivid dreams are a well-recognized side effect of the efavirenz. In most people, these side effects are worse during the first few weeks of treatment, and then either go away completely or remain but are no longer particularly bothersome. However, some people need to make a change because these sleep problems persist. A good option for you would be switching the efavirenz to one of the newer once-daily protease inhibitors, such as boosted atazanavir [brand name: Reyataz], boosted fosamprenavir [brand name: Lexiva, Telzir], or Kaletra [generic name: lopinavir/ritonavir].
Original message from bbqueen: How do I talk to my doctor about changing meds without making it seem like I don't trust his judgement? Do your patients ever come to you and suggest a change?
Reply from Dr. Paul Sax: Ah, the old doctor-patient relationship issue. You bring up a commonly-expressed concern, but one that should not stop you from articulating to your provider what you think is best for your health. If your doctor is comfortable with this field, he/she should welcome the opportunity to review with you your proposal for changing meds. After all, we're all interested in the same thing -- your health! (And yes, my patients often bring up proposed changes!)
Original message: Is not being able to take Prevacid [generic name: lansoprazole] or Prilosec [generic name: omeprazole] a good enough reason to discontinue Reyataz and switch to another protease inhibitor?
Reply from Dr. Paul Sax: If your question is, "Can I take Reyataz with Prevacid or Prilosec?" then the answer is unfortunately no. Atazanavir requires stomach acid for absorption, and drugs like Prevacid (and the other proton pump inhibitors, or PPIs) get rid of stomach acid so well that atazanavir is not an option. Fortunately, other protease inhibitors such as Kaletra, fosamprenavir, and saquinavir [brand name: Invirase] are fine to take with PPIs.
Original message from Rannn: My wife has been taking Sustiva and Combivir [generic name: AZT/3TC]. She is now complaining of stomachaches. Should she consider switching, or is there something she can take like Mylanta [an antacid]?
Reply from Dr. Paul Sax: Combivir contains AZT. Some of the side effects with AZT include gastrointestinal issues like stomach pain, nausea, and vomiting -- usually this is worse at the beginning of the AZT therapy, and often resolves with continued treatment. If it persists, however, it's time to try something else in place of the Combivir, such as Truvada [generic name: tenofovir/FTC] or Epzicom [generic name: abacavir/3TC; also known by the brand name Kivexa].
Original message from janedoe: I am a Kenyan lady. When I was diagnosed, I was started on this line of drugs: Stocrin, Videx, and Epivir. Then my doctor changed me to Stocrin and Truvada. What do you think of this combination?
Reply from Dr. Paul Sax: The combination of Truvada and Stocrin is a great regimen. If you're not having side effects, stick with it -- it's one of the best treatments available.
Original message: My first regimen was Combivir and Crixivan [generic name: indinavir] for two years. I wanted to get away from Crixivan, so I switched to Trizivir [generic name: AZT/3TC/abacavir]. I did well, and then a study came out saying Trizivir may be too weak, so I added Viread. Still doing well -- undetectable and T cells at 550. As far as I know, I have never had any resistance issues. If I'm doing well on Trizivir and Viread, should I stay or try something more mainstream? I have lost some fat in the thighs and calves, but no facial or buttock fat loss.
Reply from Dr. Paul Sax: The good news here is that you have no HIV drug resistance, so options are plentiful. The long-term exposure to the NRTIs (especially in your case the AZT part) may be causing the fat loss, and one option would be to switch to a non-AZT-containing regimen. Here are some examples of simple, once-daily regimens: Truvada or Epzicom plus Sustiva (2 pills/day); Epzicom plus Reyataz (3 pills/day); Truvada or Epzicom plus the new Kaletra (5 pills/day); plus many more! By the way, the results of a study comparing your current regimen with Trizivir + Sustiva will be coming out soon, stay tuned.
Original message from dorisforte: My boyfriend has been on Trizivir (and only Trizivir) for eight months and he's doing fine. I know this isn't really recommended anymore. Do you think he should switch off of it now or wait for signs of a problem?
Reply from Dr. Paul Sax: I'd be interested to know why it was chosen in the first place, since we know from clinical trials that Trizivir alone is not as effective as regimens that contain efavirenz. However, Trizivir does work for some people, and it's hard to tell someone who's doing well on such a convenient treatment that he/she should stop it! One option rather than waiting for it to stop working would be to intensify it by adding either tenofovir or efavirenz -- as noted in the response above, pretty soon we'll have results of a study that compared these two strategies.
Moderator 1: Don't forget: Although Dr. Sax is an expert on HIV treatment, the answers he gives tonight are only his opinion. Treatment decisions are rarely cut-and-dry issues, so be sure to talk with your healthcare provider before making any change in your HIV treatment!
Original message from Steve B: Age 65, poz 20 years, never ill. Currently on Trizivir (1 tab x 2 day), acyclovir [brand name: Zoviraz], and Tricor [generic name: fenofibrate] for my triglycerides. My T cells have never been lower than 725, and now my CD3 cells are 1,564 and my CD4 helper cells are 1,013. My sex drive is way low and I suddenly feel tired in the middle of doing some physical chores. My testosterone levels seem normal for a man my age. I have always been very active. My question is, "Am I a good candidate for mini vacations -- say for a weekend -- from my drugs?" My doctor, a (conservative) infectious disease specialist who has treated me for 10 years, does not like the idea. Thank you. Steve B., Ft. Lauderdale, Fla.
Reply from Dr. Paul Sax: Steve, since your T cells have never been lower than 725, you may not need to be on treatment at all. Currently we don't recommend therapy for people who have no symptoms and who have a CD4 more than 350 or a viral load less than 100,000 or so. Discuss with your doctor stopping treatment with close monitoring of your CD4 and viral load. As for whether your sex drive will improve by going off therapy, it's impossible to say ... good luck.
Original message from BCH: Dr. Sax: In the ongoing studies of Truvada, are you finding that the Viread component of Truvada is not as "harsh" or damaging relative to bone density and overall bone strength as was first assumed? And if it is not, then why are so many doctors still reluctant to switch to Truvada, which is so far working well in HIV patients and with fewer side effects than say Combivir?
Reply from Dr. Paul Sax: Low bone mineral density is associated with HIV itself, but efforts to pin it on one drug or another so far haven't found that any particular drug or regimen is to blame. In fact, HIV treatment itself may lead to an increase in bone mineral density over time. The story with tenofovir is evolving -- tenofovir caused a greater decline in bone density than d4T in one study, but the difference was very slight. We're going to study this in a much larger study (ACTG 5202) that is just getting going!
Original message from Pete: How is the new Kaletra different than the old one and is there any reason to switch to the new one?
Reply from Dr. Paul Sax: There are many advantages to the new Kaletra: 1) fewer pills (2 twice a day or 4 once a day); 2) no refrigeration required; 3) fewer stomach side effects; 4) can be taken with or without food; and 5) less effect of efavirenz or nevirapine on its blood levels. No reason to wait -- switch now!
Original message from Pete: I was diagnosed in November 2004 and have been taking Trizivir two times a day and Sustiva one time a day. My viral load has been decreased to undetectable in the past six to nine months, but my cell count has gone from over 500 to a little over 300. Overall I am healthy except for a current bout of the flu, which is normal this time of year. Is it time to change meds?
Reply from Dr. Paul Sax: It always makes sense to repeat laboratory values that come back with an unexpected result -- in this case, a decline in CD4 cells despite having an undetectable viral load. If this is confirmed, what to do? There are some studies that show AZT-containing regimens may lead to smaller increases in CD4 cells than regimens that do not contain AZT. In your case, you could switch the Trizivir to either Epzicom (which would simply drop the AZT) or Truvada, and continue the Sustiva. Additional good news here: Both of these regimens will be only two pills once daily!
Original message from ronus82: If my viral load is undetectable and my CD4 has been 88 for the last three months (up from a nadir of 17 when originally diagnosed with HIV in January 2005), should I consider switching to a protease inhibitor-based regimen from my current regimen of Sustiva, Viread, and Epivir?
Reply from Dr. Paul Sax: Some background: One of the big mysteries of HIV treatment is why some people get a great CD4 increase and others kind of reach a plateau. Some of the risks for a lower CD4 response are older age, hepatitis C infection, and a longer duration of HIV infection. Some studies suggest that protease inhibitor-based treatment is associated with greater CD4 increases, but this has not been a consistent finding. FYI: The average CD4 increase in after one year of treatment is 100-200 cells, but some people get less of a response. I'd stay with what you're on for at least another few rounds of blood tests before changing.
Moderator 1: Keep in mind that, although Dr. Sax has a great amount of expertise in HIV treatment, the advice he gives tonight is not meant to replace the advice of your own doctor. Please don't make treatment decisions based on tonight's chat alone; be sure to raise any questions with your doctor before you make a change in your treatment!
Original message: I have a viral load question: My viral load keeps going from undetectable to 4,000 and then back down again except for the last time when it reached 23,360 after I had just gotten out of the hospital with another case of 12-day pneumonia. I'll have a new test but not the results when I speak to you via this chat! I am on Norvir, Crixivan, Videx, Ziagen, and Sustiva. If I don't have a complete viral failure -- my CD4s are 460 -- what are my options? Thank you, Richard.
Reply from Dr. Paul Sax: Hi, Richard. The good news for you is that your CD4 cell count remains in a safe range despite some virologic rebound. It might be worth at this point getting another HIV resistance test, in particular a resistance phenotype. It will likely show that you have developed resistance to Sustiva at the very least, and this will allow you to stop this medication, as it no longer contributes an antiviral effect when there's resistance. It also may give you a sense of whether you are a good candidate for another boosted protease inhibitor such as Kaletra or the newest protease inhibitor tipranavir [brand name: Aptivus]. This should optimally be combined with another fully active drug such as Fuzeon [generic name: enfuvirtide; also known as T-20], or potentially another investigational drug from a new drug class. However, the decision about whether to go on to T-20 when the CD4 cell count is relatively high is a difficult one. I encourage you to review the pros and cons of doing so with your current doctor.
Original message from killerant: Are there any drugs now, or in the pipeline, that will help reverse body fat redistribution/loss?
Reply from Dr. Paul Sax: The best strategy for reversing fat loss is to get off the NRTIs that are most strongly associated with this side effect: d4T, ddI, and to a lesser extent AZT. Several studies have shown that switching d4T or AZT to either tenofovir or abacavir will slowly reverse fat loss. As for specific drugs themselves that do this, the insulin sensitizing agents metformin [brand name: Glucophage, Fortamet] and rosiglitazone [brand name: Avandia] have been disappointing. Prevention is the best strategy here -- choosing drugs least likely to cause this problem in the first place.
Original message from ivanhoe: I take Ziagen and 3TC separately right now. Is there any reason not to change to Epzicom? I'm doing well and don't want to cause problems. Thank you.
Reply from Dr. Paul Sax: Changing makes sense -- it's fewer pills, fewer co-pays, and once a day. So the answer is: No reason not to change!
Original message from James: I am on first-line HIV therapy (Sustiva + Truvada). My doctor wants me to change treatment because of Sustiva CNS [central nervous system] side effects that I am finding difficult to tolerate; are not being controlled by haloperidol [brand name: Haldol], antidepressants and benzodiazepines; and are increasing in intensity. What are my options and would you advise resistance testing and therapeutic drug monitoring to be used in determining my second-line therapy? My T cells on starting antiretroviral therapy six weeks ago were 230 and my viral load was 144,000 copies. Presently, my T cells stand at 600 and my viral load is down to 200 copies. Cheers, James, London, England.
Reply from Dr. Paul Sax: James, I agree with your doctor's recommendation. While most people find efavirenz-related central nervous system side effects either transient or of mild consequence, for some people these symptoms are intolerable. In your case, the fact that the symptoms are increasing and requiring multiple other medications to control, indicate that it's time to make a change. There are many other effective options, including one of the newer protease inhibitors such as boosted atazanavir, boosted fosamprenavir, or Kaletra. As for the resistance genotype, your HIV viral load of 200 copies is below the limit where most labs can perform resistance testing. Nonetheless, I would recommend sending the test, as your next regimen will likely reduce the viral load to undetectable levels and will make resistance testing impossible.
Original message from Nancy: I have been taking the anti-HIV medicines Duovir [generic name: AZT/3TC] and Stocrin for 15 months. Previously, my CD4 was 44. Now it is 303 and my viral load is below detection level. My health is very nice, thank GOD!! 1. Shall I continue in such a way or is it necessary to change? 2. I am now single and want to get a partner. Is it possible to check what type of HIV (1 or 2) is in my body and in my partner's body in order to prevent another infection as well as to have children?
Reply from Dr. Paul Sax: Glad to hear you have responded so well to the treatment! Your current regimen of zidovudine, lamivudine, and efavirenz is one of the most effective available. If you are interested in becoming pregnant, you will need to change the efavirenz to either nevirapine or a protease inhibitor, as efavirenz may cause fetal abnormalities. Although I can't say for certain given the information that you've provided, it is far more likely that you have HIV-1 rather than HIV-2, as viral load testing is routinely available only for the former.
Original message from Trixie: I am currently on Crixivan and Trizivir -- have been on Crixivan since 1999. Most recently, I have experienced significant loss in my legs and arms, and have a bloated stomach. Also, I am experiencing numbness in my fingers and toes; leg cramps; blue coloration occasionally in my toes; and an increased heart rate. Any suggestions? My doctor seems unwilling to consider a med change since my T cells are at 400 and my viral load is undetectable.
Reply from Dr. Paul Sax: Crixivan revolutionized HIV treatment when it was released in 1996, and certainly is an effective drug from the antiviral perspective. However, it has several distinctive side effects such as causing kidney stones, insulin resistance, and problems with skin, nails, and hair. Fortunately, we now have many more less toxic options for therapy. I would talk with your doctor about the simpler options available today, with a reminder that if for some reason these do not work out, you can always go back on Crixivan and Trizivir. Here are some examples of simple once-daily regimens: Truvada or Epzicom plus Sustiva (2 pills/day); Epzicom plus Reyataz (3 pills/day); Truvada or Epzicom plus the new Kaletra (5 pills/day).
Original message from David: I was diagnosed in 1992 and developed PCP in 1994. I have been through several cocktails and now have a lot of resistance and minimal response to a lot of HIV drugs. My HIV pharmacist wants to put me on T-20 (twice daily), nevirapine (200 mg twice daily), tipranavir (500 mg twice daily), and ritonavir (200 mg twice daily). I am not too enthusiastic about injections of T-20 even though I would be using the gun rather than a needle. She has said that I can substitute Videx (400 mg twice daily) for the T-20 but says it won't be as effective as T-20. I have a reduced response to Videx on my genotyping. I need an opinion as I have to start a new regimen soon. Thanks.
Reply from Dr. Paul Sax: David, although T-20 plus tipranavir is a great combination for people who have highly drug-resistant virus, it is optimally used with as many other active drugs as possible. If you truly have been through many regimens, then one thing you should check is whether you have resistance to the NNRTIs. If so, nevirapine is not going to be helpful here. As for the substitution of ddI for T-20, these two drugs are not comparable at all in the context of multidrug resistance, so I agree with your pharmacist on this one! Finally, you did not mention your current CD4 cell count or HIV viral load. If on a resistance phenotype your virus is already resistant to tipranavir and your CD4 cell count is in the relatively safe range (greater than 200), then I would hold off using T-20 until you have another fully active agent to combine with it.
Moderator 1: We're just about out of time for our live chat on changing your HIV meds. Thank you to everybody who submitted questions tonight -- and our apologies to those of you whose questions we won't be able to get to!
Original message from polyester bride: I have heard that there is an ongoing clinical trial that is testing whether it is possible to skip taking meds on the weekends and still maintain an undetectable viral load and a stable CD4 count. I am thinking about using a pill splitter to gradually reduce the strength of the meds that I am taking. Do you think this can work?
Reply from Dr. Paul Sax: Yes, there is a study looking at skipping weekend doses for people on efavirenz-based regimens, called the FOTO (five-on, two-off) Study. But splitting the pills and taking less on a given day is NOT a good idea, and can increase the risk of resistance. In general, I'd recommend against strategies like this -- and any of these interruption strategies -- except in the context of a clinical study. There are too many situations where it can go wrong, leading to resistance or other problems. Please note, this is not the same as stopping medications for toxicity: Sometimes you have to do this, preferably under the guidance of your doctor.
Original message from deadbeckett: You've been great Dr. Sax -- as usual!
Reply from Dr. Paul Sax: Thanks for your nice comments, and stay warm wherever you are!
Moderator 1: Our interactive chat on changing HIV meds has now concluded. Thank you, Dr. Sax, for answering everyone's questions tonight!
Dr. Paul Sax: My pleasure, it's been fun! Take care!
Moderator 1: And to all of you who asked questions or took the time to join our chat tonight: Thank you for tuning in, and for being a part of this informative experience!
A full transcript of this chat will be available on TheBody.com within the next week. As soon as it's up, we'll provide a link to the transcript within our weekly e-mail newsletter.
To those of you whose questions we were unable to answer tonight: Please try visiting The Body's "Switching or Stopping HIV Treatment" page at www.thebody.com/treat/changing.html for more information, or ask our staff of experts at www.thebody.com/experts.html.
Moderator 1: Thank you all again; have a good night!
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