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Colchicine off label use for PPMS

Guys I spent time last year in awaiting diagnosis as it looked like i had MS. However, MRI’s clear and it was suspected Behcet Disease which can cause transverse myelitis. However, I resemble an MS sufferer more and more and am awaiting new MRI results. I have been treated for the last year with 3 x 500 mcg of Colchicine daily and it improves my joint mobility immensley. I recently noted that it can be used off label for PPMS and wondered if anyone had tried it here? I tolerate it very well, though many find it makes their bowels a bit volatile…however given that it takes an earthquake to make me go I have no issues. As I said MS is back being considered as a diagnosis for me so I hope you dont mind me popping in and raising the debate. I reduced my dose recently and saw a marked decline in my mobility which I thought was interesting . Best wishes to you all …sorry I cant create paragraphs…Gill x

Hi, I seem similar to you. I resemble an PPMS sufferer too. But I have a clear LP and brain scan. I had a lesion on cervical cord seen in 2011 and 2012 but resolved in 2013. So last MRI was clear. My right leg is effected - mainly weak tibia and calf spasticity. I have you been told what exactly is causing your mobility problems ie spasticity/ weakness.

Thankyou.

Moyna xxx

Oh yes I meant to add that I may have radiation myleopathy from radiation treatment that I had over 20 years ago. xxx

Hi Gill and welcome to the board…

I’ve never heard of Colchicine and just gave it a quick google… interesting. Not a whole lot of links for use with MS but I see it’s used for gout, which I suppose might be why it has helped your joints. Be interesting to see if it continues to help you… anything that can improve mobility is exciting!

Sorry to hear you’ve been stuck in limbo for a while. Not easy I know. I hope you get some definite answers soon.

Take care and you’re very welcome to come on here… we all know what it’s like waiting for diagnosis.

Pat x

MS and gout are mutually exclusive diseases, no one has got both !!

So it would be very odd if a drug that helps gout would also help MS.,saying that it is anti imflamitory. and works by reducing the amount of white blood cells entering an imflamed area.

Hmm so it is said with MS that it is the white blood cells that destroy the myelin.

Worth looking into for sure.