Q and A

Question

My relative has psychosis and fluctuating viral load?

Hi. My relative was diagnosed with HIV AIDS in 2020. It was in the late stage of the virus and she was severely ill. I found out 3 weeks ago when she opened up to me. She’s currently hospitalised with acute psychosis. What is the relationship between HIV and psychosis?

My question is about her viral load which has been fluctuating since 2020. She’s taking antiretroviral medicines. Her latest results show her viral load increased from approximately 2,000 in Jan 2024 to 24,000 in April 2024. What is the impact of her fluctuating viral load? What approach can I ask of the medical team? Should I ask for a review of her medication?

A multi disciplinary team is currently reviewing her case. She’s had an MRI  and CT scan as well as lumbar puncture to assess the cause of her psychosis. 

Answer

HI there

Thanks for posting a question and for letting us answer this online.

I am sorry to hear that your relative is having a difficult time. This also sounds like a complicated situation and that the hospital are trying hard to find out what is wrong.

The two main general tests for people living with HIV are the viral load amd CD4 count.

The main goal of HIV treatment, called ART, is to keep viral load undetectectable, so having a detectable and fluctuating viral load is not good. If viral load is detectable in a blood test, especially when higher than 200 copies/mL, it is likely to be detectable in other body sites, including in the brain and spinal fluid (CSF).

This means that HIV might be directly linked to psychosis. Sometimes HIV can be detectable in the CSF even when it is undetectable in blood though, so this might have been an ongoing problem. Having detectable viral load on ART when someone has been talking all their meds, can mean that drug resistance has developed. This involves changing to a new combination.

On the other hand, if your relative was having psychological problems linked to a different cause, perhaps not related to HIV, this might have stopped them from taking their HIV meds properly. So the detectable viral load might have been linked to low adherence and the meds might still be active.

As your relative is now in hospital, the doctors will be able to make sure that the meds are being taken on time and also whether drug resistance has developed. If there is drug resistance, changing to a new active combination will reduce HIV throughout the body, including in the CSF, and this might be enough to reduce the symptoms of psychosis, if they are HIV related.

Their CD4 count is also important. If this is high – especially if above 500 – then HIV involvement if less likely. If the CD4 count is low – especially if below 200 and even more if below 50, then the symptoms are more likely to be an HIV-related infection. Many different illnesses can cause brain-related complications when the CD4 count is very low.

The scans will be looking at whether these other infections or other causes can show the likely cause of the psychosis. These are highly sensitive scans that also show the hospital is providing a very high level of care.

It is also really good that your relative is being managed by a multi-disciplinary team (MDT). This is always recommended when HIV care becomes complicated. If your relative is currently being treated at a hospital that doesn’t have a large HIV department, it is important that the MDT includes a senior HIV expert from one of the larger hospitals based in London or another large city.

This is because the largest HIV clinics will have more experience of complex cases and their opinion and advice could be essential.

I hope that your relative is okay but please let me know if you have other questions.

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