Familial Mediterranean Fever (FMF)

[Alinek]

Hi I've been taking Colchicine now since about 40 years ago. Today im feeling pain in my feet and hands. The orthopedic I saw today is kind of blaming it on the long term intake of Colchicine. Could this be possible? Anyone with FMF taking Colchicine can help pls? Thx a lot.

[JeezLouiseNowWhat]

Actually, yes. I have heard of it on two fronts. I have had some great success with colchicine, but I have also had it increase the neuropathy in my hands and feet-and so I stopped taking it and a lot of the increased pain (new stuff) did go away. However, ulcers came to visit almost constantly and the 'old' intense joint pain was still there. So, I started methotrexate and that really helped with the ulcers- however I still put colchicine back on board for flares or any sign of percardial or pleural cavity pain. I just can't take it twice a day for months on end. A friend of mine was put on it for gout (original use for it) and he found that it had a positive impact on his blood sugars (recalcitrant diabetes, on a pump and CGM), sooooo he researched and found out with the 'max' dosing was and- in his great wisdom- decided to experiment to see how he could manage his gouty arthritis pain and help with his blood sugar issues. The result, over a period of a few years, was a DECIDED increase in his neuropathic symptoms in his feet- which his docs put down to diabetes, until he shared his colchicine use with them. Then he was off to endo, rheumy, and neuro and the upshot was that the increase was not diabetic neuropathy getting worse- it was colchicine induced neuropathic pain. They yanked the colchicine and his pain levels went wayy down. So, yeah- i have heard of it. What to DO? That idk, since I have Behcet's and not Med Familial... I do hope that you are able to find a path that works for you!

[Nurgulali]

Hi I just came across your post. I would very much like your help and advice if possible please.

My 10 year old son has just been diagnosed with FMF and I’ve been told he needs to be on colchicine for life. Is there anything you tried or recommend for my son as my world has turnt upside knowing he has to live with this condition for the rest of his life.