Question
Has anyone reported peripheral neuropathy with injectable CAB/RPV-LA?
27 May 2025. Related: All topics, Injectable ART, Side effects.
I have been getting peripheral neuropathy symptoms (numbness in hands and feet) when using cabotegravir and rilpivirine injection. It has come on gradually and increased over time.
Has anyone else reported this side effect?
Answer
Hi there
Thanks for your question – and it hasn’t been asked here before.
I have reported the development of these meds and I haven’t heard this reported before. I also searched the full prescribing information for both meds and neuropathy isn’t mentioned.
This doesn’t mean this hasn’t happened or even hasn’t been reported before, because very rare side effects are often not included in these reports. However, neither of these types of drugs have been linked to neuropathy either, which makes it difficult to see a mechanism for how they could cause this.
What has your doctor said?
The first step would be for your doctor to test for the neuropathy and then look for other reasons this might have developed.
Advanced HIV can also cause neuropathy if you ever had a very low CD4 count, but the symptoms would normally start when the count was still low. Other mkedications can also cause these symptoms.
Depending on how severe your symptoms are, this might also include a referral for pain management.
If your doctor confirms your symptoms and can’t find another cause, switching to a different HIV combination would be the easiest practical next step. If any drug does cause neuropathy, the sooner you switch to an alternative, the sooner this side effect might resolve. This would need to be a switch for a few months though because drug-induced neuropathy sometimes continues for a while before symptoms get easier.
In the UK, your doctor could also contact the MHRA Yellow Card scheme for reporting side effects and ask whether any other similar reports have been made. If your symptoms reverse after switching to a different combination your doctor could also use the Yellow Card scheme to report your case.
You can also report this yourself.
This is a link to i-Base info about peripheral neuropathy:
i-base.info/guides/side/peripheral-neuropathy
This is a link to information about the Yellow Card scheme.
i-base.info/htb/2076
Outside the UK, a doctor can also contact the drug manufacturer directly to report any suspected side effect and to find out whether it has been reported before.
Hello Mick and thanks for getting in touch.
I am very sorry to hear you have developed neuropathy.
What has your doctor said about this?
If they have managed to exclude other causes such as lack of vitamins, they should offer you an alternative regimen and hopefully things will resolve when you switch.
Additional management options such as physio and pain relief should also be discussed.
Vitamin B tests and consequent supplementation if needed might also be helpful.
It would be important to report this appropriately either directly to the company or through the medwatch as your experience can help others too.
https://www.fda.gov/safety/medwatch-fda-safety-information-and-adverse-event-reporting-program
Let us know how you are doing
I too am taking Cab and have been since the second arm of the study (about 8 years now). I too all of a sudden am experiencing nueropathy in the hands and feet. I also experience times of shortness of breath when it is at its worse, typically in the evenings. We have run a ton of labs, heart work up, EMG, MRIs, etc. Everything is coming back in-range / nothing of concern. I have seen a neurologist, rheumotologist and will be seeing a pulmonologist next. It is frustrsting. My symptpms started with some RLS like movement in the evenings, building over the weeks to fist clenching and then full on nueropathy in both hands and feet. For me, it tends to be more on the left side versus the right, but does flare up on both at times.