Feb 4, 2005
Okayy i have been HIV+ for about 16 years and have for the past 3 years fallen to resistance to ALL the meds out there , i have been told even though one may be totally resistant to meds its better to be on something than nothing so its been almost 2 years on Fuzeon and its keeping the VL under a 1/2 Million and a CD4 of 3 and no real OI"S a little anemia and ITP is a sensable approach and should i not fix what is not totally broken or take a break from the meds entirely i have tried that under supervision but my CD4 was higher at that point not like now at 3 ,the Doctor does not understand me at all he just says to keep doing what i am doing which is fine but very frustrating any ideas would be greatly appreciated imensely thank you as a RN i can understand what you might have to say appreciate your time and opinion take care be well
Response from Dr. Frascino
Drug resistance is one of the biggest problems we face today, particularly in those of us who have been positive for many years and extensively treated with a variety of drugs in the past. So, aside form continuing to push pharmaceutical companies and the FDA to develop and approve new medications, what do we do? Here are a few ideas to consider:
1. Make sure you are working with an HIV specialist who is competent, compassionate and experienced in managing these types of complex medical problems. A second opinion never hurts if you feel your doctor "does not understand me at all and just says to keep doing what I am doing."
2. Are you really "totally resistant to all meds?" Resistance testing is a complex science. Resistance is also not an "all or nothing" phenomena. It may be that your virus still has some sensitivity to certain drugs in certain combinations, despite being "resistant" on the lab report. You should have both genotype and phenotype tests done to help put together your best option for a salvage regimen.
3. It is true that even if you are "resistant to everything," being on something is better than being on nothing. There appears to be a beneficial and protective effect, possibly because viral fitness may be compromised as viral resistance develops. If you stop all the drugs, your virus may become more "fit" or aggressive.
4. STIs (strategic treatment interruptions) were all the rage a few years ago then again so were "Hootie and the Blowfish". However, we now know they are a bad idea, particularly in folks with advanced disease and low CD4 counts (that's referring to STI's, not Hootie). Yes, there are reasons to stop meds cumulative drug toxicity, for example but in cases like yours, I would certainly advise against a drug holiday at this time.
5. Regarding your current meds, I would hope you are on something other than Fuzeon as a solo agent. I would also hope you are on prophylaxis to protect against various opportunistic illnesses PCP, MAC, etc.
6. Regarding your anemia, has a specific cause been identified yet? If not, you should talk to your HIV specialist and determine the potential causes of your anemia anemia of chronic disease (HIV related), medication side effects, blood loss, unrecognized opportunistic process, etc. and treat the specific cause or causes.
OK RN, that should give you something to work on for now! Write back if you need additional advice. And don't forget to consider getting a second opinion. It's true you're not broke yet, but you are creaking at the seams a bit.
Getting My Breath Back
Tinnitus as manifestation of PN?
This forum is designed for educational purposes only, and experts are not rendering medical, mental health, legal or other professional advice or services. If you have or suspect you may have a medical, mental health, legal or other problem that requires advice, consult your own caregiver, attorney or other qualified professional.
Experts appearing on this page are independent and are solely responsible for editing and fact-checking their material. Neither TheBody.com nor any advertiser is the publisher or speaker of posted visitors' questions or the experts' material.