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Behçet's UK
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Cholchine and joint pain

Hi everyone. I have had a rough go for awhile and I recently met a new doctor who thinks I have Bechets. I was originally diagnosed with Lupus but he doesn't agree. He has placed me on cholchine for my joint pain and ulcers. Does anyone have experience with how quickly this medication works? It's making me very sick to my stomach but I don't want to stop if it will also serve to tell us I am responsive. I am also on a highish does of prednisone. Thanks in advance for thoughts and support.

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Hi Stm252,

I've been taking colchicine for 35+ years and its the only drug that's really helped me with oral/genital ulcers. It can be pretty rough on your stomach/intestines tho, which u already know :-(

My doc helped fix that by stopping my colchicine for a week. He'd started me at 3 tablets/day and I never left the bathroom.

Then i started over on a low dose -- 1 tablet every 2-3 days at first, and sloooowly working up to 2 tablets per day, so my body could get used to it. That worked really well.

After all this time, I'm pretty stable on 1/day now, but if I start to flare, I can increase to 2 tablets/day (1 in the morning, one at night) for a couple of days, then go back to 1.

Good luck, and I hope things work out for you :-)

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Thanks for the support. Yes it's so hard on the tummy! I noticed that you didn't mention anything regarding joint pain support from.this med. Has anything helped you with that?

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Colchicine didn't help my joint pain, which was really bad in my hands/wrists/knees/ankles. When my ankles finally hurt so much in the morning I could barely walk, my doc put me on a prescription NSAID called Feldene (piroxicam). It made a long-term difference in my joint pain, and I didn't even take it more than a couple of weeks. That was back when you needed a prescription to buy NSAIDS -- now you could try one of the over-the-counter brands to see if it works for you. But check with your doctor anyway!!

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Gotcha! Thank you again! :)

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I had little success with Colchicine sickness and joint pain remained really helped the ulcers but ended up getting an allergic reaction to the drug and taken off it, I read it helps lots of other people. Hope yoy can find something to help soon.

Gillian

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Thanks Gillian for sharing your experience. I think I am hoping for a magic bullet here! I have just been so sick and I am tired of it!

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Its really hard and I know we all are suffering in our own way some much worse than others. I thought after the Colchicine the Prednisolone was going to be fantastic but this has turned out not to be the case so not waiting to findout where to next, got to wait until end of May for my next rheumatologist appointment. Really hope you get some help soon.

Gillian

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Been on Prednisone for quite some time! I know the wait, watch, wonder game. I am feeling pretty demoralized. Now they have me going in for a colonoscopy on top of it all!

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Colchicine has really helped my ulcers. 3 pills a Day is hard on my stomach. I take two a day and if I feel a flare coming up to 3 a day for a few days. I can’t speak to joint pain as I’m lucky enough to not have that symptom... yet. My doc started me out on three pills a day to get my flares under control. Yes I spent a lot of time in the bathroom but the long term benefit was well worth it. Then as I was feeling better lowered my dose. Now my doc lets me self manage depending on how I feel. I truly hope this helps you!!

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Sounds like it has been hard on all of our stomachs! Today the diarrhea was still rough and painful.but at least slowed down in frequency. Thanks for sharing that it helped your ulcers.

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Hi everyone I’ve been on colchicine now four years too it’s the only one that made a difference with sores but last summer my consultant started giving me infusion of infliximab I get it every 8 wks I can now walk again with out two walking sticks still in pain but no where near the pain I was in it’s a drug that they give for chronhs but it seems to help with behcets pain it’s also stopped me being sick all time you should ask about it

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Colchicine helped my joint pains. It was rough on my tummy though. After a couple of months I built up a tolerance to it, but at 18months the diarrhoea came back. I also got weird shooting pains in muscles. Disappeared as soon as I came off it.

I was sad as it did help quite a bit. The benefits build up over the first 6 months as your neutrophil levels go down.

I am on hydroxychloroquine now: it's done wonders for the joint pains. I took prednisolone for a while while I was waiting for it to work, but it was horrifying the number of raging infections I picked up. I was given three courses of antibiotics over 6 months. Steroids are the scariest drug ever.

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I am actually on all three right now! Pred, hydroxy and colchicine. Really hoping for a miracle. Working full time, have a husband and an 18 month old is very difficult with always being in pain. But I keep hoping something is going to click. They originally thought this was lupus. Then a week ago the doc said nope. Bechets.

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How long have you been on hydroxychloroquine? When mine kicked in around 6 months it made huge differences to joint pain, but I was still getting ulcers. I almost went back on to colchicine as I've been off it over a year now, but the doc suggested trying a drug called pentoxifylline which can reduce inflammation in small blood vessels and has a very mild anti-TNF action. I have been on it a month so I should know in a few weeks whether that has mopped up the ulcers or not. If it doesn't then I can either go back on colchicine (knowing it'll probably do the trick for a year before it gets ugly) or step up to azathioprine.

There is a very clear 'treatment ladder' for Behçets here in the UK. There are many drugs on it, but basically colchicine is always the first rung of the ladder as it is really does do the trick for a lot of people. If that doesn't work, they try stronger immunosuppressants such as azathioprine, ciclosporine, and thalidomide. If the disease still proves resistant then anti-TNF 'biologics' such as infliximab can be called upon. The jury seems to be out on whether corticosteroids are worth all the horrendous risks down the line, but they do help a lot of people in the short term and seem to be used at all stages of treatment, especially while other drugs are building up.

I think the drugs I am on represent alternative milder treatments for those who colchicine doesn't suit - things to try before you take the big step of going on to azathioprine.

I do feel for you. Working full time while parenting a small child is a very tough call for anyone, without the stresses and strains of managing a debilitating illness. I hope you find something that helps you very soon.

There is a lot of advice on here about topical treatments to help with ulcers and other multifarious Behçet's nasties. As well as discussion about all the million-and-one social and employment issues we have to manage. I would also heartily recommend Joanne Zeis's book 'Behçet's Disease'. It is very thorough and up-to date, and is also very readable. It helped my husband make sense of it all.

Hang on in there.

Jx

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Hi I’m curly my doc put me on ranitidine and landzaprasol to settle my stomach it has help give cholchine a good go tho it’s helped my also see if you can get infliximab infusion for your joint pains it’s really helped me are u in uk?

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Hi Curly 1430. I am definitely going to give it a go. I have already started to settle a bit with my tum. I am in the US. Just started this med last week....

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Hi, colchicine has helped me. I went to the GP when I could barely walk, had horrendous migraines & neck pain. I started colchicine about 3 months ago after referral to rheumatology & was told I met the criteria for behcets. I was nervous about taking it. I also have FMS so was put on nortryptyline to help with pain levels which took low level aching away. I had continuous oral ulceration & these went within 2 to 3 doses. I was started on 1 a day increasing to 2 which I’ve stabilised on. It’s taken my joint pain down considerably. Whilst I’m not symptom free, I’ve only had a few say two or so ulcers in that time. I was also unaware I had genital lesions and this has cleared up along with the frequency of headaches. I’ve also had redness and skin lesions which have also lessened. So it’s doing the job for me. Hope that helps.

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Oh this makes me so hopeful!!

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