|No T cells PCP and Anemia
Jan 6, 2010
No ones fault but my own. I am 53 diag 11 years ago took meds counts did well. Last 3 years life with wife and in this new town have been horrible. Have been alcoholic ( guess always be even if not drinking) I was in hospital 10 days PCP pneumonia released a week ago have lost 15 lbs in a month the Dr's some were idiote ( recomending blood transfusion) insist I get back on meds my question is at the point I am now could meds really make a difference or just cause IRS and do more harm. Seems like ID Dr's seem to have one dose fits all could it be possible to start with lower less toxic dose and see what effect I just can not see someone giving me a handfull of pills picked from a pill chart and saying lets see what happens. I am tired of being sick and just to eat more drugs to get sicker. If I do get on meds to go from 4 T's and 800K VL to a higher level would take months a year low red cell would be helped by antiviralss? I am ready to move on not fearful of death and if quality will be worse with meds I just cant see prolonging the suffering for a while just to do. Thanks Allan
Response from Dr. Frascino
Certainly quality of life needs to be factored into every treatment equation. I absolutely agree with you about that. It's something some health care providers frequently do not pay enough attention to! That said, it sounds like your current quality of life isn't all that great: recent hospitalization; 15-pound weight loss; "I am tired of being sick . . ." etc. Consequently it certainly seems like there is room for improvement. Your comment, "I just cannot see someone giving me a handful of pills picked from a pill chart and saying let's see what happens," sounds cynical. A competent, compassionate HIV physician wouldn't practice medicine that way. You report 11 years ago you took meds and counts did well. Why would you anticipate a different outcome now. Immune reconstitution syndrome (IRS) is a reflection of improved immune function. Should symptoms of IRS develop, they can be managed. No one is interested in "prolonging the suffering." Rather, your HIV specialist physician should be advising you of treatment options to improve your health.
The cause of your fatigue, for instance, is most likely multifactorial. Certainly your recent bout of PCP, your weight loss and your severe immune deficiency could be contributing. In addition, if you are anemic, this, too, can be a very significant cause of fatigue! If the anemia is significant, a blood transfusion would indeed be warranted and could provide a significant and very quick increase in your energy level. Why do you think that recommending a blood transfusion would make a doctor an idiot? Actually, blood transfusions can be life saving! Antiviral medicaments could help with anemia if indeed the cause of the anemia is HIV. It may or may not be. (HIV can cause "anemia of chronic disease.")
Your suggestion about starting medications at a "lower less toxic dose" is not a good idea. Taking suboptimal doses of antiretrovirals quickly leads to drug resistance and renders the drugs useless. It's important to note that the newer HIV medications are much easier to take (more convenient) and much less toxic! What you really need at this time is:
1. Find a competent and compassionate HIV specialist with whom you can work closely. Discuss your concerns and your treatment options thoroughly with him.
2. You need mediation to help prevent another bout of PCP or another opportunistic infection. This is called prophylactic treatment.
3. I would encourage you to restart a combination antiretroviral regimen without delay. I've seen responses to therapy, even with counts similar to yours, that are nothing short of miraculous.
4. Get into a treatment program for alcoholism.
Allan, only you can decide when to give up. From what you've told me, I would not advise doing so at this time. You've spent the last three years trashing your health. You're correct: It's no one's fault, but yours. It's also completely up to you if you wish to take a different course now. Could you get significantly better with appropriate treatment? Certainly it's possible. I encourage you to give it a try. Had I given up and let HIV win when the virus found me in January 1991, I wouldn't be here today responding to your question.
I'm here if you need me. I urge you to go kick some HIV butt!
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