Part of A Practical Guide to HIV Drug Treatment for People Living With HIV
After Your First Combination
Even if you have planned your HIV treatment carefully and stuck to your medication schedule perfectly, you may have to change your drug combination. This could be for one of two main reasons:
The two situations are similar in some ways, but quite different in others. In both cases you've gone to a lot of trouble to make what you thought was the best choice. You've relied on "the experts" -- your doctor, the researchers who make the treatment guidelines, and yes, even guides like this one. After putting all that effort into picking your first combination, it may be very frustrating to feel like it hasn't worked out and you're going "back to the drawing board."
Those kinds of frustrations are understandable, but don't despair. Changing your treatment does not mean starting all over again from square one. You have already gathered a lot of information and done a lot of thinking about which drugs are best suited for you. Not all of that is going to change; you can put the same knowledge to use the second time around. Finding an effective combination that you can tolerate may take a bit of trial and error at first, but most HIV-positive people are able to do it. (Read Appendix C for information on the drugs you can consider when changing your HIV treatment.)
You will work closely with your doctor to make any changes to your treatment. Don't stop any medications without talking it over with your doctor first; suddenly stopping any drug might have consequences you don't expect, including HIV developing drug resistance. There may be a "right way" and a "wrong way" to make the changes you're considering.
As previously discussed, your viral load is the best way to know whether your current drug combination is working. If your treatment is successful, your viral load should drop to an undetectable level and stay there (apart from occasional, short-lived blips up to a detectable level).
If your viral load remains detectable after several months on your first combination of antiretroviral drugs, this means your treatment isn't working. You and your doctor will have to do some detective work to find out why. The most common reason is missing too many doses of medication. It could also be because the dosage of one of the drugs is not quite right, and a simple change (the number of pills you take, how often you take them or perhaps what you take them with) will correct the problem -- or it might be time to change your drug combination.
If you've been on treatment for awhile with an undetectable viral load, and then your viral load becomes detectable and stays that way, it's likely that your treatment has stopped working and it's time to switch to a new combination.
When a drug combination cannot suppress the HIV, this is called treatment failure. If your treatment fails to suppress the virus, you and your doctor will have to determine: (a) whether you are missing too many doses of your medications, and (b) whether your virus has developed resistance to one or more of the drugs in your combination. If blood tests show that you have drug-resistant virus, you and your doctor will need to pick a new combination, one that has the highest chance of controlling the virus in your body. For your next combination to be effective, you will need to identify which drugs are no longer working and replace them with drugs that will work against the virus.
The important thing is to make sure that your new combination has as many effective medications as necessary. If an effective new drug is combined with others that are ineffective, the virus will probably become resistant to the new drug fairly quickly, and the potential effect of the new drug will be wasted. Ideally, the new combination should contain three fully effective drugs.
I became resistant to almost everything [in 2003]. ... We were waiting for a new drug called T-20. At one point my doctor pulled me off everything because the T-20 has to be taken in combination with other drugs, and if I'd stayed on all the drugs I would have become resistant to them all and the T-20 would have been useless.
If your treatment is not working, you may not need to scrap your whole combination: some of the drugs you're taking may still be effective. Resistance tests (see Appendix E) can detect changes in the virus, which predict which drugs are most likely to work and which ones won't. Some expert "judgment calls" may also be required, as tests are not always able to detect viral resistance. With this information, a doctor who is knowledgeable about HIV drug resistance should be able to suggest new treatment combinations.
Finding new combinations after a treatment failure is generally easier at first and becomes more challenging as more treatments fail, since each failure leaves you with fewer options to choose from. HIV that has become resistant to one or more drugs may also be cross-resistant to other drugs in the same class, even if you have not taken those other drugs before. If you have already used several antiretroviral drugs and your virus has become resistant or cross-resistant to many, you may need to:
Two weeks into taking meds for the first time, I became so nauseous it was horrible. I ended up developing resistance to my drugs because I couldn't keep them down. I finally saw a specialist who switched me to a different cocktail that I tolerated really well. My advice? Don't compromise your quality of life. I needlessly suffered because I didn't feel I could be honest with my doctor about the problems I was having. I thought I was going to disappoint her. Looking back, all I did was prevent myself from getting the best treatment.
If your antiretroviral medications are successfully keeping your viral load suppressed but you can't tolerate the side effects, the first thing to do is to find out if what you're experiencing is a side effect of the medications or a symptom of another infection or condition. Start by discussing with your doctor whatever you're experiencing.
Many side effects can be managed. Your doctor will likely have suggestions. You may also want to talk to your pharmacist, nurse or other healthcare professional who is knowledgeable about HIV treatment. Next, read CATIE's Practical Guide to HIV Drug Side Effects, available at www.catie.ca or by calling 1-800-263-1638. It contains practical remedies for the most common side effects. By combining the best available drugs with the remedies that can help eliminate side effects, you may be able to benefit from your current combination of drugs while eliminating the problems it is causing.
If you still find the side effects unbearable despite all these coping strategies, then it's time to talk to your doctor about changing your combination. Together, you should be able to figure out which of your drugs is responsible for the side effect, and then pick an alternative that's likely to be more tolerable and still be effective. Many antiretrovirals are known to commonly cause certain side effects -- this can make it fairly easy to spot the offending drug. However, a little more puzzle-solving with your doctor may be needed if the side effect is an unusual one.
Note that there are a few drugs that you should never go back to if you have stopped taking them because of their side effects. Abacavir (Ziagen, also found in Kivexa and Trizivir) and nevirapine (Viramune) are the prime examples: If you have had a "hypersensitivity" reaction to abacavir or nevirapine, you should never start taking it again. The reaction you experienced the first time can recur, much worse the second time around, and it could even be fatal. Make sure to get all of the most up-to-date safety information about any drug you are taking.
Practical Guide to HIV Drug Side Effects
The Positive Side -- health and wellness magazine for people living with HIV; includes many articles about staying on schedule and dealing with treatment side effects, from digestive problems to depression. Look in the e-zine index for more (www.positiveside.ca).
These and many other relevant resources can be accessed on CATIE's website (www.catie.ca), through the CATIE Ordering Centre or by calling CATIE at 1-800-263-1638.
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This article was provided by Canadian AIDS Treatment Information Exchange. Visit CATIE's Web site to find out more about their activities, publications and services.
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