Peripheral neuropathy recurrence after stopping ethambutol

@tw508 I don’t mind AI it can be helpful but always keep an open mind at the same time. It’s a good place to get an opinion and then contemplate the info given and research more.

@cd33 I am so lucky that I have specialists who are both open-minded and very knowledgeable about their fields. I do think they were a little slow catching the rifampin side effect I had (auto-immune thrombocytopenia - very unpleasant). But since that appeared in only 1/8000 patients in one report I saw, I think they can be forgiven for that one.
But the point is, they do listen and respond.

@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.

It just shows you, we are all different and just because it’s a rare side effect at whatever stage on meds we can be that 1 in 8,000 and they should not discount the patients symptoms, we know our own bodies and what’s normal or not for us.

Yes the 1/8000 side effects statistics is seriously flawed in my opinion
What it is is massively underreported. How many doctors actually log the side effects to the medical board? Never I’d bet that’s why the statistics stay the same and patients keep getting damaged.
They blame everything else but the treatments they gave you and choose to bury their heads in the sand .
The antibiotics destroyed me.

@damcipro in what way do you feel the antibiotics destroyed you? I don’t understand how they can try to disprove the cause when in so many years of age and never experiencing the same symptoms until commencing the meds. Sent to a neurologist who agreed with me about the neuropathy from drug toxicity but they still didn’t acknowledge and sent me to another neurologist who is looking at other avenues ie spine. Please, I ask, just concede.
Yes maybe if they reported these effects, they might not be classed as rare. Of course I say this with all due respect to our doctors who are qualified and treating us to best of their knowledge and ability. They are extremely busy in other areas of Respitory disease not only NTM and understand some lapses in agreement. I advocate for myself, I told the last neuro that I respected his opinion but that I know 100% the cause was the ethambutol. There’s no doubt in my mind.

@cd33 the ethambutol started it that was recognised by eye test.
That was changed to Ciprofloxacin which was literally like a bomb going off in my body . The nerve damage was bodily wide it paralysed my right side more than my left and and left me with severe muscle wasting due to not being able to produce collagen that effects gut lining and all kinds of structural damage. Some doctors acknowledge that Fluroquinolone antibiotics can do this but again state it’s rare. (It isn’t) side effects can start to show months after stopping the drug. Most doctors haven’t got a clue of the devastating permanent damage. If you research some antibiotics are actually chemotherapy agents that cause DNA damage

@damcipro I’m sorry to hear that. It all sounds terrible. The first neuro sent me to a doc for a nerve conduction study. That guy said to me if you had a toxic reaction to drugs you would be a cripple! I was really shocked at those words. Maybe he was referring to the type of reactions you have had. And maybe I’m not a cripple because I noticed the symptoms very early in treatment. Thank goodness for that having the one toe numb is enough. I am sorry for you and hope there is still some recovery pending. How long have you been off the meds?

@cd33 after I had the reaction to rifampicin they asked if I would try the ethambutol again, still refusing to believe it was the cause, I flatly declined and took no replacement just continued with Azithromycin and clofazimine. Ceased all meds just over a month ago after 14 months duration.

@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.