Q and A

Question

How serious is HIV-related dementia?

A friend has a CD4 count of 80 and has HIV-related dementia but it is not too extreme case. How serious is this and how long can he live?

Can the CD4 count ever increase to a normal level if he is taking the meds provided?

Answer

Hi

Thanks for your question.

The seriousness of HIV-related dementia varies dramatically depending on someone’s individual circumstances and treatment history.

For example, if someone is newly diagnosed, then even with a CD4 count less than 100, HIV treatment nearly always increases the CD4 count. This may take a year or two, but gradual increases up to 200 and above are common, and this level of immune restoration will provide good protection against HIV-realted infections.

It is also important to try to get a specific diagnosis for the cause of the dementia. This includes an MRI brain scan and an expert interpretation or the results. This is essential to rule out other causes. The results will determine how serious the impact is on your friends health and whether additional treatment is needed.

Your friend should also have a partner, friend or family member included in any discussion with the doctor, and this person can ask these questions too.

Although there are over 25 approved HIV drugs, choosing drugs that are good at getting into the brain are generally recommended. The medical term for this is to ‘penetrate the blood-brain barrier’.

It is important to know that this has been considered for your friend’s treatment.

It will also be important for your friend to have support to ensure that all doses are taken every day. This can make a huge difference to whether treatment is successful. By definition, dementia can make it more difficult to remember taking meds, so someone who can make sure no doses are missed will give the drugs the best chance of working and this in turn will hopefully help the dementia to reverse.

4 comments

  1. Simon Collins

    One of the groups leading research into drug penetration into the brian is called the CHARTER Group. They have published a CNS Penetrating Score (CPE) for individual drugs. A review of the latest update to this score is available at the NATP report at this link.

    Please scroll down on that webpage to see the latest slide for individual drug penetration scores for individual drugs.

    Emtricitabine (FTC) in Truvada does pretty well, but not the tenofovir. Atazanavir is in between.

    Please remember this is only one aspect of research into drug penetration and most doctors and unsure of how to interpret the results. Unless you have CNS-related symptoms there doesn’t appear to be strong data that suggests CPE score is related to better clinical outcomes. If you have CNS-related symptoms, then many doctors would use drugs that get into the CSF because it seems like a rational thing to do, and because some small studies suggest this.

    For most drugs, brain penetration is a best guess based on drug levels in the fluid that the brain sits in – Cerebral Spinal Fluid (CSF). This is not the same as knowing whether a drug is active in brian tissue.

  2. Simon Collins

    Hi

    This is a question that is easier to ask than to answer :)

    More importantly, it is a question that so far seems to only have clinical relevance for someone who has symptoms related to brain function. In general any combination that reduces your viral load to undetectable seems to control HIV pretty well all over your body, including in your brian. This happens even when using drugs that are not thought to cross the blood brian barrier very well or at all.

    So people using drugs that don’t reach the brain do develop health complications related to brain function any more than people using drugs that get in to the brain.

    For someone with symptoms, most doctors would chose drugs that we think get into the brain because this seems a good idea. Whether a drug penetrates the brian or not is not know for most drugs. The evidence usually comes from whether the drug can be detected in the fluid that the brain sits in – called the Cerebral Spinal Fluid (CSF).

    One of the groups leading this research, called the CHARTER Group, has published a CNS Penetrating Score (CPE) for individual drugs. A review of the latest update to this score is available at the NATP report at this link.

    Please scroll down on that webpage to see the latest slide for individual drug penetration scores.

  3. Dan

    Is atazanavir, ritonavir and Truvada good for getting into the brain?

  4. Mike

    Hi,

    Which drugs are best at getting into the brain?

    thanks.

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