Hi everyone. I do not have a definitive diagnosis of Bechets but have had genital ulceration since 1992 usually lasting 10-15 days, extremely painful and swollen . Mouth and nasal ulceration started in 2009. Recently I had really bad nosebleeds and the ENT specialist who cauterised my nose three times stated he feels my issues are vascular and caused by Bechets. I have previously been diagnosed with Lupus, APS, Raynauds and Fibro. I get joint pain and swelling, rashes, fatigue, migraine, have an enlarged spleen, Underactive thyroid, pernicious anaemia. I have tried Colchicine twice. The first time I was put on three a day and I lived in the toilet and felt wretched. After a week I had to have anti sickness pills, Immodium and Dioralyte. The second time it was just 1 a day and I had similar symptoms. My Rheumatologist now wants me to try it again. Has anyone had such side effects and managed to take it please? Any advice woukd be gratefully received
Colchicine side effects: Hi everyone. I do not... - Behçet's UK
Hello there, I had similar issues with colchicine, in the end I decided to come off it too. I have read here since posts or comments from several people saying they reduced the dose right down and gradually built it up which solved the problem. If in the UK you may want to ask your GP for a referral to one of the Behcets centres. Your symptoms do sound Behcets like. Hope that helps.
Hi thank you so much for responding. My Rheumatologist is being very rigid about my taking it and as I suffer with my gut anyway I am dreading just being stuck in by the loo for days on end. I live in Wales and I am not sure there are any Bechets centres here and we now do not have a right to be referred to England, shocking really when we have Rheumatologists that are unwilling or unable to help. I will do some research and maybe I will have to save up and have a private appointment . Xx
Oh that is a shame, the centres are Liverpool, Birmingham and London. I go to the London one. I'm not sure if you could go privately but I would call one of the centres or email and ask for advice. It may still take a very long time to see someone and in my case it still took 4 years to get a diagnosis from them but they do know what to look for and obviously have lots of experience to draw on. The problem with Behcets is that we all have differing symptoms. It's a tough one for Dr's.
I was diagnosed with Lupus in 2009, APS in 2011 so I know these AI diseases are difficult to diagnose and there are many overlaps. My issue is that each time I see a new Consultant which is often my diagnoses get changed. Bechets has been tentative with me since 2010. One says I have it, then another says no it is Lupus. Currently 11 years after becoming ill all diagnoses are up in the air which means no treatment at all. It is nightmarish for people to be left untreated because Consultants cannot agree a diagnosis. I went to a Lupus Centre of Excellence in London St Thomas’s before the rule change in Wales and they confirmed Lupus but queried Bechets also. Now these diagnoses have been taken away along with the treatment.
I'm sorry to hear that, I know what you mean about ever changing diagnosis. It's not fun. I worry what will happen if my Behcets consultant decides it's not Behcets and I have to start again. . Have you tried the Behcets UK website, there might be some advice on there which could help you.
Hello, I'm sorry to hear of your struggles. I don't have any advice re medication as I am trying hard to resolve my own symptoms with diet and lifestyle changes. (Early days but I feel a lot better than I did in April!!)
Unrelated to Behcets I did a hypnobirthing course in which I learnt to question the advice given by health professionals. Drs are only human after all. Anyway you are within your right to refuse treatment if you know it won't work and you know you better than anyone.
Hopefully others will give you advice as to what treatments may work and maybe like others have said the centres of excellence could offer advice. They have some fact sheets on their website which maybe of use.
Don't be pushed along a treatment path unless you are happy with it. Especially if the Dr in question is not regularly working with Behcets.
I take two tablets a day but started slowly. Began by talking half a tablet once a day with food then moved onto half a tablet twice a day with food. From there I took one tablet once a day with food then one tablet once a day and half a tablet once a day with food. I then moved to my full dose of one tablet twice a day with food. I had no side effects and I am someone who gets gastric side effects from medication a lot. I take my tablet halfway through a meal with plenty of water. Xx
Sorry to hear about your issues with diagnosis and medication. I have had more problems with Rhuematalogists than any other specialist. I quit seeing my last Rhuemy because he was rude and not helpful and I've seen many. My primary Dr just referred me back to Rheumatology because he can't keep seeing me for some of my issues Anyway, I am currently on colchicine one pill a day to control my ulcers. I used to take one pill only during a flare then stop when my ulcers went away. I haven't noticed any side effects from taking it. Maybe your doctor will let you start on a low dose then work your way up if need be. I wish you luck!
Yes me too. I have a wonderful Respiratory Specialist, Neurologist, Orthapaedic Surgeon but Rheumatologists just seem to be impossible to get along with. One I saw saw me once and doubled my Lupus meds. It caused Macular Oedema . Rather than simply apologise his response was I see lots of people like you who are always ill and there is nothing wrong with them. Like it or not the only things wrong with you are Fibro and hysteria. Go and live your life and if you get sick you will prove me wrong 😱 I was so horrified, shocked and unable to react. My carer was with me and burst into tears to which he raised his eyes to heaven. The next one said definitely not Fibro. Our lives in their hands. We cannot expect magic cures but we should be entitled to curtesy and respect.
What a horrible experience! Disgusting treatment! He’s lucky you didn’t make an official complaint, which would have been a hard one to ignore as you had a witness.
Yes it absolutely destroyed me. 11 years of chronic ill health and pain and changing diagnoses just took their toll and I actually started to question whether I was causing my ill health and maybe needed a psychiatrist.When the next Rheumy said MCTD, then the one after said UCTD and no Fibro I knew it was them and not me. I have not met my new Rheumatologist. I spoke to him on the phone 18 months ago and he acknowledged it must be extremely difficult for me to cope when Rheumatologists cannot agree on a diagnosis. He said we should start from scratch. I had real hope. Then he rang me again last week for five minutes and his only suggestions were to go back on Hydroxychloroquine which I refused and Colchicine.
Hiya, take the tablets at bedtime, really does work. Good luck.
hi yes i cant take it but take colchimax alternate days whch works for me at the moment. i used to take an anti runs pill with colchicine which wasnt satisfactory. i think it worth you trying it and adapting dose as necessar which i did . in the main it keeps things under control. good luck. liz
I had a very bad stomach initially from colchicine. I was on two a day, and I had to stop them. Then after a rest I went back on them. Started off with half a tablet twice a day, with breakfast and evening meal. Then after a couple of weeks added in half a tablet with lunch. Soon I was able to take two a day, in halves at breakfast, lunch, dinner and with some cereal at bedtime. I found it worked better at controlling joint pains if I split the doses through the day. I never went beyond two a day. Do be aware that the effects of colchicine build up over several months. I did not see the full effects until about 4 months in. But it was worth the wait - very few ulcers, no joint pains, no systemic flares and soooo much more energy. I went from being unable to work to being able to work part-time and had a social life for the first time in years. Sadly, I could only take it for a couple of years as my stomach got bad for other reasons and I could no longer tolerate it. Now on hydroxychloroquine which is effective but not quite as good as colchicine at controlling general flares.
Hi Jaxxi thanks for your reply. I will definitely try your method and hope it helps me too. I was on Hydroxychloroquine 400 mg for nine years, then a new Rheumatologist put me on 600 mg and within two months I had developed macular odema. I have fluid on the retina two years on and now can now no longer take it which is gutting because it did ease the fatigue, and joint pain although it did not stop the oral, nasal and genital sores but did reduce the number of flares. I had a life then, now I am going from infection to infection, flares, asthma, balance problems, sleep problems. Life is miserable so anything that might help me I am willing to try.
At the Behcet’s Centres of Excellence, Colchicine is the first step on the treatment pathway unless there is eye involvement. It’s so effective that I have even heard of it being used as an indicator - I.e. if it gets better with colchicine, it must be Behçet’s. When I could not tolerate colchicine any more, I was offered the choice between hydroxychloroquine and azathioprine. I plumped for hcl . 3 years on hcl is working less well than it did initially so the Rheumatologist at B’ham CoE suggested doubling the dose, but I resisted due mainly to the eye concerns. I am considering combining colchicine and hcl, as I am on an effective treatment for the gastro issues that led to the difficulties tolerating colchicine. I think they are both good drugs - some downsides, but not as many as the next-level immunosuppressants.
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