|What should I do? Multi-drug resistant
Apr 27, 2006
I have been hiv+ since 1988. Unfortunately in the 90's I got into certain street drugs, and went through many drug combos obtaining resistance. I have now been sober over 4 years, but my t-count has been under 50 for all 4 years due to my becoming resistant to everything, including t20 (I had one month, when I started t 20 that my tcount went to around 100, but then next month spiraled back down). My virus is about 12% effective due to the combo I am taking currently.
The only drug available I have not taken is the new prot.inhibitor Tipranavir.
My viral load is over 100,000(chances are in the millions) and for over 3 years my t count has been around 10. I have been lucky, never had an opportunistic infection, and only have problems with HPV and constant freezing of those (everywhere) and some tiredness on certain days.
I see a doctor here in the Minneapolis area who is involved in trials, but I have never been put on one. I see there could be a new combination soon but I have been told if it any of those drugs aren't being put on trial in Minnesota, it is unavailable to me except for later expanded availability which usually happens close to FDA approval.
I feel as though I am walking a thin line and people on different boards keep telling me to get on trials immediately. I don't want to start anything less than 2 new drugs (3 would feel much safer this time to avoid resistance). Is there any way, being out of state of certain trials, to get on these trials or gain access to these drugs before a major infection hits me (like TMC114 and 125 or one of the new entry inhibitors or the new nukes, ect)?
Response from Dr. Sherer
This difficult situation is very common. It does illustrate the need for people who have just been found to have HIV and who are starting HIV medications to make the most of that opportunity. HIV is very unforgiving. You have done good hard work to get to and maintain sobriety for 4 years, so you are used to swimming upstream.
In general, I would suggest that you talk to your doctor about this question. He or she knows much more about the specifics of your case, and they are critical to making the best choices at this point, i.e. your treatment history, your resistance test and viral load results, drug toxicities, etc. I will make some suggestions in any event, and you can talk to your doctor about them.
There are two new protease inhibitors - tipranavir and TMC-114 - that have good activity against viruses that are resistant to most current PIs. In the studies that lead to their approval by the FDA (or to expanded access, in the case of TMC-114), 1/3 of patients were able to have good virologic control with their use.
There are also some clinical trials of other new agents for people who are heavily treatment experienced that may be available to you and your doctor, depending on where you live. You can use the NIH hotline to find such trials in your area - 1-800 - TRIALSA.
It might be useful to get a phenotype resistance test in addition to the more common genotype test. Often, for example, your physician can identify one or more of the current NRTIs such as tenfovir, abacavir, or didanosine, to which your virus has partial susceptibility.
Finally, there is evidence, even in someone like yourself who is resistant to most or all current drugs, that staying on some ART is better than being on none at all - better in terms of longer survival and less rapid disease progression. For example, when patients continue on one or more drugs of the NRTI class like 3TC, AZT, or DDI, they have less rapid declines in their T cells and less rapid increases in their viral loads than those who stop all drugs.
Also, remember that when people with HIV become ill, it is usually due to opportunistic infections, some of which can be prevented by taking simple medications. The two common forms of 'OI preventive therapy or prophylaxis' are bactrim (TMP-SMX) one double strength tablet once daily (which prevents pneumocystis pneumonia) and azithromycin two tablets weekly (which prevents MAC or mycobacterium avium complex infection). You should still be taking both of these.
I suggest that you talk to you doctor about your status, your questions, and this response.
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