Is anyone else taking Colchicine?

[Kelly_Jefferies]

After seeing a Behcet's specialist last week I've been prescribed a drug called Colchicine and just wondered if anyone else is on/ has taken this drug and, if so, did it make a difference? I'm to try this drug before they can consider me for Infliximab which will have to be applied for due to it being such an expensive drug - I'm willing to try anything if it helps me but would like some feedback if possible

[John_Mills Volunteer]

Hi Kelly, I don't know of anybody who takes or has taken Cochicine, but it has been around as a medicine for 3,500 years! It is an extract from Colchicum - autumn crocus. It has been used since ancient times to reduce inflammation, especially in gout. I'm guessing you don't have gout, but perhaps something similar. If it's been in use for all that time, it must do something good. It is an alternative to NSAIDs like Ibuprofen. A drug company in the US is now doing proper trials on it to show its benefits and safety. But in return, the price has rocketed from 6p a tablet to £1.50 in the US. Much cheaper here! If you want to know more about it, let me know.

[Winter64]

Hi Kelly, I took it for just over a month earlier this year for my skin vasculitis and various urticaria's. I personally couldnt get on with it as it made my gut vasculitis worse and my tummy really burned and hurt.

From talking to my GP though this was an unusual reaction and I dont believe it is in the list of side effects. I had chosen this as my next drug along to take from the many I have tried as an alternative to Dapsone or cyclosporin, but for me it was one of those ones that made me feel more poorly, it also didnt make any difference to my condition.

My GP did say though that there are many many people in the UK taking this drug with no problems, as John says, mainly for gout.

[Kelly_Jefferies]

Thanks guys! I have been warned that a common side effect is diarrhoea and, because I already have crohn's/behcets which affects my bowels, the specialists are hoping it doesn't affect me this way but if it does then I can add Loperamide. I don't have gout but the main symptom I suffer with is the joint pains in my shoulders, hips & knees which is the reason the new specialist has prescribed this drug. I've also been prescribed a steroid/antibiotic mixture in a soluble tablet to gargle with for the mouth ulcers I get frequently. I highly suspect that, because I've tried azathioprine, cyclophosphomide, mycophenolate & methotexate - all of which have not kept my symptoms under control for any length of time - that the new specialist just wants to try the colchicine before resorting to the infliximab because of how expensive it is! Thankfully this specialist is authorised to prescribe infliximab but she will still need to go before a board to officially have it sanctioned.

[Netty123]

HI Kelly, I too have Behçet's if you would like to make contact. I have been taking colchicine for three years now (since diagnosis). I take 3 a day. It took perseverance due to the gut effect but it made a huge difference very quickly. I suppose having had undiagnosed vasculitis since before age 4 anything was likely to feel helpful. I would certainly recommend giving it a good try since it is fairly safe considering it is one of the strongest anti-inflammms known to man. I have tried Aza, Metho and MMF twice and will embark on IV cyclophosphomide soon because I have been refused funding for the newer drugs and am very steroid dependent but do feel the colchicine of some help, if minor.