HIV medication and MS – is there a connection?

Ian Cook looks at the evidence connecting anti-retroviral drugs and MS

For the past two months I have been taking the anti-retroviral drug PrEP in the hope it might help treat my progressive multiple sclerosis (MS).

PrEP is one of a group of drugs known collectively as HAART (highly active anti-retroviral therapy) and I bought a three-month supply online from a well-known high street pharmacist after filling in an online questionnaire, getting an online prescription and stumping up £160.

I know I am not the only MSer doing this because MS specialist Prof. Gavin Giovannoni of Barts Hospital in London said the following in an online post published on the social media platform Medium, “I know that many of you are taking HAART based on hope.” He then added a cautionary note: “Let me remind you that hope is not a strategy to treat MS.”


While it is hardly surprising that MS medics like Prof. Giovannoni don’t approve of patients like me self-medicating, and I respect this view, I think Prof. Giovannoni’s remark about hope misses the point. When you have non-active secondary progressive MS, and you are told there are no disease modifying drugs for you, hope is the only strategy left.

Anyway, putting personal issues to one side, it’s reasonable to try and address Prof. Giovannoni’s other point about growing numbers of MSers taking anti-retroviral drugs and ask – why is this happening?  A growing number of us MSers are now waking up to the fact that a virus, almost certainly the Epstein Barr virus (EBV), and possibly an endogenous (inherited) retrovirus, are part of the reason we get MS in the first place. This is called the “dual virus hypothesis”.

Existing anti-virals like acyclovir have been unsuccessfully trialled in MS and are ineffective against EBV hence don’t work in MS. By contrast, many HAART drugs, are effective in combatting EBV as well as HIV. PrEP, for example contains an anti-viral drug tenofovir, known to work against EBV. On a practical note, PrEP is relatively easily obtained online or from your GP.

The science

To delve into the science about anti-retrovirals and MS a bit more deeply, there are several cases of HIV positive MSers who have taken anti-retroviral drugs whose HIV symptoms and MS symptoms have both improved. In some patients, MS improvements have been so great that all evidence of their MS has disappeared. To give one example, in 2011 there was a medical report of a 26-year-old Australian man diagnosed with MS several months after being confirmed as having HIV. The man’s MS symptoms disappeared completely after he started taking anti-HIV drugs and remained that way throughout the following 12 years in which his health was monitored. The report was published in the 2012 European Journal of Neurology.

The evidence

Of course, one case may be dismissed as a freak event, but there is more evidence, far more. In 2015, a study published in the Journal of Neurology Neurosurgery and Psychiatry found people who were HIV positive and receiving HAART drugs were two thirds less likely to develop MS than those who were not taking these drugs.

Then, late last year (2023) a study published in the Annals of Neurology gave some possible explanations of the science behind what has been a medical mystery for years. A news release accompanying the study was headlined, “HIV drugs might help prevent multiple sclerosis, large new study suggests.” The researchers said that having HIV and taking HAART drugs might be effective against MS in two separate ways.

“HIV leads to a progressive loss of immune cells called CD4+ T cells. These same cells are implicated in MS, as they initiate the cascade of events that leads to inflammation of the brain and spinal cord.

“Possible mechanisms for the effectiveness of antiretrovirals in reducing MS risk and disability include the inhibition of the Epstein-Barr virus. More and more research is accumulating to highlight the important role of Epstein-Barr in MS. The antiviral properties of HIV therapy might limit Epstein-Barr virus activity, thereby minimising both the risk of getting MS and of the disease progressing in those who have it,” they said.

In other words, the reduced rate of MS in the HIV community is probably due to them having HIV as well as drugs used to treat HIV. For those of us MSers who don’t have HIV, anti-retroviral drugs may nevertheless play some role in stopping or slowing down MS disease activity and for this reason I feel justified in taking PrEP.

As if further justification were needed, a Phase 2 trial of 50 MS patients is currently taking place in the US led by a Harvard neuro-immunologist to see if PrEP can reduce EBV levels in MSers. The US trial, which started last summer, came about partly due to the backing of an MS patients’ led group called Solving MS. By backing research involving PrEP these American MSers are doing what I am doing but in a more professional way. I hope their trial, which reports in December, is successful in further proving the link between EBV and MS as well as showing that anti-retrovirals can work as MS treatments. For my part I will continue taking PrEP as it may possibly put the brakes on my advancing MS.

To return to Prof Giovannoni and his point about not taking PrEP based on hope. I would say once again that when you have secondary progressive MS without relapses, hope is your only strategy. I will cling on to this hope firmly while I still have the strength to do so.