Hi guys
I was officially diagnosed with Behcets just over a month ago after 4 years of various problems. I'm currently on a 5 week course of steroids as the colchicine they thought would work didn't. Today they've decided to start me on 50mg of azathioprine daily then upping to 100mg after 2 weeks. I've read some pretty scary things about this drug and would just like to hear anyone's experiences on it?
Thanks x
Hiya! Don't believe everything you read. I'm on the the same meds and haven't had any issues, but we're all different. Just be mindful of how your feeling and if you have any concerns call the doctor.
I started on Aza at 25mg and have been increasing every month by 25mg a month after having a blood test to check my liver levels - I am currenly on 125mg and will increase once more to 150mg. The main side effect I have is hair loss but I know this doesnt happen to everyone. Some people experience sickness and they recomend taking it in the evening if that happens but I havent had that.
I have been on 150mg of Azathioprine daily since march last year. It in my opinion a bit of a wonder drug. I am having monthly blood tests, which up until now are all ok - B12 deficiency just showed up so being seen next week. The best advice I can give you is get a GP you can trust and see them every time. Ditto ophthalmologist and rheumatologist. You can scare yourself silly on the internet, but try to pick out the issues relevant to you - not what could happen. I lost sight in one eye - was petrified it was going to happen in the other, but my consultant explained how the drug works. It put my mind at rest. There will always be some side effects - there was a settling in period for me - but there are ways of treating them too. If Aza doesn't suit you, there are other drugs available. We have a chronic illness - accepting it is the hard part. Once you have - the point I am at now - you can take back control and get on with life. Good luck - keep posting.
Hi there , My son has Behcets and was prescribed colchicine . He was diagnosed finally about 14 months ago at age 25 having had symptoms all his life.
Just to share our experience ( which we started somewhere further back on here) - we are having astonishingly good results with omega 3 oils. We are vegetarian so he is taking linseed/flaxseed capsules ( where non- vegetarians could use fish oils ). I suggested this to him about 6 months ago and so he started on the oil with our consultant 's( Dr Kaldhoun Chaabo) blessing ( as it is a food supplement and not medicine he was happy for us to try in addition and alongside the medication ) . Really quite extraordinary results have followed. Within a few weeks my son came off the colchicine as he didnt feel any sign of the symptoms and continued with the oils. He has stayed off the colchicine and he hasn't had a flare since!! And these were regular occurences . What has convinced us the oils are working is that when he feels good and gets busy he stops taking them daily and his joints begin to ache and maybe the odd mouth ulcer starts again. Then he resumes the daily oils and the flare drops back. This has happened enough times for us to know there is 100% correlation. There are no downsides to taking the oil ( in fact my work in nutrition informs me that most of us could benefit) and they are only what is readily available on the high street in supermarkets or chemists so they are totally safe to use as per the packaging instructions. I hope this is useful and if it encourages anyone else to give them a try and they help then that would be awesome. Our consultant is definitely interested and supporting what we are doing and is just going to keep watching and monitoring my son's progress. Of course there will be no trials on this as the oils are not pharmaceutical products so there will be no money to be made to make it worth investing in research but I have to say I am now totally convinced we have a useful thing ,(at least for our one man experiment !,) to add to the mix in managing this horrid condition. We will keep updating .
Good luck with the new treatment. Here is our Factsheet on Behcet's and Treatment. However, we would emphasis that as above, everyone is different and what doesn't work for one patient, may work for the next. Always consult your doctor if you have any concerns. Best wishes to you. behcets.org.uk/wp-content/u...
For me, Azithoprine, and Colchicine work well together. I believe I started out on low dosage and slowly increased the Azithoprine to maintenance dosage to 150mg 3x day. I can still experience an infrequent Flare Up but they are definitely less severe. Sometimes steroids are increased for maybe a week or two but then I go back to maintenance dosage of 2.5 mg.
I really do not worry so much about the listed side effects of my many prescribed medications especially when they help me feel so much better.
Best Wishes
Best Wishes to you, Betty
I have taken Azithioprine and Colchicine for the last 7 yrs. with good success! I am so thankful for both medications because they helped me to cope with Behcet’s for years! Currently, my flares and pain level have increased greatly so I will soon be changing to Humira. I am praying that this medication can provide me the same relief that I experienced with Azithioprine and Colchicine.
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