Peripheral neuropathy recurrence after stopping ethambutol

@tw508 oh no me too! Severe thrombocytopenia my platelets were on 5 I had to have a platelet transfusion and they didn’t want to believe it was the rifampicin because I’d been on it for 12 months already, however they can’t conclude anything else even though they tried and now they agree. It was rifampicin and I can never be re-introduced to that antibiotic or any of its family again.

Very true, but it is going to be hard to avoid, it’s our future. As for citations, I could probably have asked for much more info. I just sent the buts I already knew from my own experiences and would have commented on. It was just quicker to copy and paste, sorry!
It shows that this neuropathy can start very early and also after some length of time. My doctors have tried to disprove I had neuropathy so soon after starting. I know 100% this was from the medication.

@cd33 Thrombocytopenia mostly occurs in people who had been on rifampin, taken a break, then went back on, although I have seen a report of it occurring in primary treatment (Respir Med Case Rep. 2023 Feb 25:42:101823.)

@cd33 My doctor tried to say that it was "very unusual" to get neuropathy from ethambutol and that he had many patients taking the drug, some even in their 80's (I was 70 when I started it) and he said they were fine. It made me feel like he was saying I was crazy which I knew I wasn't. And there would be no other reason for the neuropathy because everything else checked out fine. I don't know what it is with some of these doctors!! I ultimately moved on to another ID doctor as the one I was seeing moved out of state. I wasn't unhappy about that.

@cd33 3 years now and my symptoms from the Ciprofloxacin and other antibiotics which obviously contributed have got steadily worse.
Old scars are beginning to reappear and break open and every joint is loose in its socket
Vision loss- you get the idea.
Excruciating pain it’s like rapid aging
Yes good job you stopped in good time I was to foolish to listen to doctors when I knew something wasn’t right. Now all I get are shrugged shoulders and left to rot.
But I do live in a country with a third world health service (UK) NHS.

@tw508 with me I had no breaks. At 11month of being on it, I started getting bruises. I ignored that for a week until the bruises started getting very purple and green on torso legs and arms and thought I better send an email and ask about it. Got a call at 10pm to go straight to emergency. So you see it affects us all differently. It to date after ceasing rifampicin all is good.

@linda1334 hmmm I don’t understand that either. They didn’t believe anyone could get it that quick, as I did. And staying on for 18 further days I had shooting pains all over so it wasn’t just the feet.

@cd33 I didn't put two and two together at first. But when I did, it was also starting in my arms and hands. That's when I just decided to quit it. It went away in my arms and hands because I didn't have it there that long. It's just my feet that still bother me and it's been about two years.

Has anyone looked at vitamin levels or tried B12 supplements? If so, did it help?
Humans are stupidly complex. The rather intense course of antibiotics prescribed for NTM tend to cause poorer absorption of nutrients including B vitamins, which can increase the risk of neuropathy. So not only do we have to contend with ethambutol, we also have to deal with poorer nutrient absorption and (ahem, for many of us) advanced age.
I don't blame doctors for not figuring it all out. Everyone is different and it's HARD to know what to do. All we can ask is that they do their best and listen to us. And what WE have to do is to educate ourselves, both through peer-reviewed literature and patient-reported outcomes like in this forum. Thank you to everyone here for that!