Help please! I need to be on a complete lactose free diet to manage Colchicine side effects (based in UK, England)

[CuteCats]

Hi Everyone,

I'm on colchicine for my Behcet's (along with mycophenolate +/- prednisolone).

Rheumatology clinic had recently recommended increasing the dose, and I experienced extreme diarrhoea for the entire month that I was on 500mcg three times a day, so I had to reduce it to 500mcg twice daily. During that time I replaced milk with milk alternatives, which actually did seem to help.

When I've returned to the clinic, they suggested trying a complete lactose free diet to help with the side effects. It feels quite extreme, especially for me, as my main diet is basically milk and cheese 🫣😬 And now that I'm taking a close look, it seems most foods (especially ready made) contain some form of milk.

Has anyone in the UK had to do this? How have you managed? Any recommendations? I feel so lost & overwhelmed, especially as I am currently struggling with my behcets symptoms, as well as from long covid, and the fatigue, brain fog & headaches are really getting the better of me when I'm trying to research this stuff 😢 😞

[klaris]

I’ve been on colchicine for many years and have always tolerated 2 X 500mcg per day. However, when I had a flare up in the summer I was advised to go to 3X a day…OMG 😱 Like you, truly awful side effects so was told to go back to my usual dose. I accidentally took 3 a couple of weeks ago and felt very unwell again for 24 hours.

Having to go completely lactose free is quite an ask, and seems a strange suggestion by clinicians when you’re experiencing a strong reaction to a medication that can be toxic if taken in excess.

Personally, I now feel I need to be extremely careful with how much colchicine I take - as even on my usual dose I still have days when I feel nauseous, have stomach pains and need to rush to the loo for no apparent reason. I wonder if I may have become quite sensitive to colchicine now, so when I get these strange episodes I always cut my dose out or down for a couple of days. It’s a balance of course, and colchicine really does help my inflammation and ulcers but caution is now my priority as I don’t feel it’s a drug to mess around with!