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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 Gill.

I can’t comment on the Colchicine but I understand your frustration getting a diagnosis. It took 2 1/2 years for me. I had numerous MRI’s, and none showed enough lesions for MS. Then I was sent to neurologist who ordered more MRI’s, a VEP both of which didn’t prove anything, but then he did a Lumbar Puncture which gave a definite positive for MS. Have you had all of these tests done? If not you may need a referral to a neurologist who will.

That way at least you’ll know whether or not it is ms. If it isn’t then they need to make sure you get a proper diagnosis that explains your symptoms. Neurological disorders are some of the hardest to diagnose which I know isn’t what you want to hear but it’s true.

I wish you well.

Cath xx