I wish the Doctor had spend more time talking about PReP (pre-exposure prophylaxis) and nPEP (post-exposure prophylaxis) to prevent HIV. Our community is the least informed about these bio-medical interventions. Can you explain that now?
PrEP is a way for people who are at very high risk of getting HIV to prevent HIV infection by taking a pill every day. Much research has been done on this recently and there has been some good progress made. Good information is available at websites like AIDS.gov. There are very specific recommendations for who should take PrEP and what people can expect. For post-exposure prophylaxis, there are very specific protocols, and you should consult your doctor for these. Prevention and avoidance of risky behavior is always the best choice.
Do the meds make you gain weight over a period of time? And does it cause your legs to swell? If so, what can you do to change the swelling and weight gain?
Taking your HIV medications as directed is very important. The newer medications these days result less often in body fat changes, but patients can still experience gain in fat in the belly and sometimes loss of fat in the legs, which is more common than leg swelling. Overall these meds don’t tend to make patients gain weight, but increasing weight may come with improved health and eating more as the virus comes under control, so make sure you concentrate on good nutrition. Ask your doctor regarding leg swelling which could have other causes.
I have a friend with HIV. He says even with all the discounts, the good medicine is barely affordable and the generic stuff makes him sick.
Costs of medications can be an issue, but there are many programs out there to help cover these costs. Talk to a local community outreach program in your area to help with this. Also the generics in the U.S. are generally very good, and regulated. Many of the HIV drugs are not yet off-patent and generics are not an issue. Make sure you only take approved drugs and watch out for scams of people selling “generic” drugs, which are not real generics.
Considering the fact that people infected with HIV are there any culturally specific longitudinal research studies being conducted looking at quality of life for the persons that survive and live? What is their overall quality of life?
There are studies out there looking at quality of life. I’m not familiar with specific names, but one can go to Clinicaltrials.gov and do a search on HIV and quality of life and see the open studies.
People with HIV can develop a disease call Castleman disease. What is it and how is it treated? A relative recently died of the disease. The doctors discovered while hew as in the hospital. They wasn’t sure what it was or how to treat it. I don’t feel they were doing enough to save him….He died within a few days of them treating him after being in hospital for over two weeks.
This is not my specialty but it is a rare disorder of the lymph nodes, which can occur with other rare cancers in HIV. It is a very serious disease. I can’t comment on how your relative was treated but agree that more research needs to be done on this disease. I’m sorry for your loss.
