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Behçet's UK
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Humira anyone?

Has any tried with success (or failure) the immunosuppressant drug, Humiri? I was told this is a less toxic version than some. I would be really like to hear from you if you have tried it, and if you experienced any side effects and of course, benefits, in the treatment of Behcets. Bless you this new year!

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Are you in uk ? Just so I can google it some times has different names where ever you stay

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Hello there. I moved from my home in the UK several years ago and now reside here in TX USA.

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My sister takes this for Arthritis and it works really well for her. Not sure how how well it would work for behcets but I think it is the same as azathropine? Could be wrong. I have infliximab infusions and I take cellcept. Hope it works for you.

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Thank you SO much. This is encouraging, it is the very first time I have had anything like this, new territory.

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No not azathropine, that is Imuran. Sorry!

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It worked wonderfully for me for 2-4 years. Eventually they think I had this rare thing happen where I developed antibodies to the drug. (My body is great at doing odd things like that.) I tried other biological after without success. Humira was the first thing that actually worked well for me. I had elevated liver enzymes at one point but they went back down so I continued using it until it stopped working.

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Gosh, I am sorry. I do hope something else can be found for you, I understand how very temperamental our immune systems can be. May I ask what symptoms it actually helped, please? Thank you so much for responding.

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Hi there, I’ve tried nearly all there is to offer with immunosuppressants. Nothing has really worked or I had an intolerance to it. I also have been on the biologics including infliximab, humira and currently on monthly infusion of toxciluzimab , weekly metheltrexate and cholchine. This current concoction seems to be holding the Behçet’s steady but still have gastro intestinal problems and a cough I’ve had for months ( currently there investigating the cough). Now while this is currently holding the uveitis and kidneys and ulcers etc at bay it may not work for the next person. One thing I’ve learnt with this horrid disease it is very individual to each person n so is the treatment. Take care and I believe anything is worth a try.

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Thank you for sharing this information, it really is helpful. Yes, we are all so vastly unique there has to be something out there for each of us. You are so right, everything is worth a try, I shall be trying Humira this week.

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I tried Humira over the summer when they still thought I had Crohn’s. I did nothing for my joint pain, but did seem to keep the body sores away. The drug made me exhausted all the time so I decided to go off of it after three months. I won’t go back on it.

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Sorry it did not help all of your symptoms, I hope you found something that did, or does. Thank you so much for sharing.

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Hey Amber. I’ve been taking Humira for 15 months. I take it in conjunction with immunosuppressants azothioprine and colchicine. It took a little while to see any effect and to shake off the side effects but once I did WOW!!! I keep telling my doctor that it’s my little miracle cure. It’s no overstatement for me to say that it’s given me my life back. I’ve been able to work more hours. I can excercise. I can socialise. I’m free of ulcers and joint pain. I’ve come off my antidepressants because I no longer feel hopeless. Everybody is different of course and I think some people want to see instant results if they have to resort to sticking a needle in themselves (I know I did) but if you stick with it it’s great. Don’t get me wrong, I still have Behcet’s. But it’s not ruining my life anymore.

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Wow! Wonderful, truly this is good to read and it certainly gives me hope. That is the kind of miracle I am praying for, thank you for sharing this I am sure others are inspired too.

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Hi. I've been on Humira for nearly 4 months and it has definitely helped. My flare ups happened every 4-6 weeks before Humira but I've only had one in 4 months whilst on it. Mouth ulcers are now rare (after 2 years of always having at least 3) my joint pain is manageable and my energy levels ate much better. Keeping my fingers crossed for continuing improvements!

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Thank you so much, I am very encouraged by your words. I am so glad it helped you. I am eager to get started this week. Wishing you better health each day!

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Hi Amber,

Have just started on Humira injections, so far it has not helped symptoms but it is very early days as i have only had 2 fortnightly

I have been told it can take upto 7 months to work, i have been on Methotrexate injections for 3 years , but have had to stop these at the time i started Humira due to too much potassium in blood....think my kidneys would have struggled

I felt better when on the Methotrexate only ...as others have said the Humira has absolutely wiped me out...never felt so tired, but no sickness as with mtx...but joint and tendon pain has increased again

Good luck

Kev

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Hi, I’ve been on Humira injections for about 6 months now. It has totally stopped my ulcers. The joint pain is still present, but things are so much better after suffering for about 5 years with constant ulcers in my mouth, colon, & other areas. Haven’t noticed any real side effects. Hope it works for you as well as it has been working for me!

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Wonderful! Thank you for sharing, this is inspiring to read. I am ever hopeful. Wishing you wellness too!

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Good luck with the new treatment ambersorganics.

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Our adult son has been on this for approx 3 months so far. As far as I’m aware no side effects so far and he says he believes it’s helping him.

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Hi Amber, I started on Humira at the beginning of December. I've had two injections so far the only thing it's done for me is it stopped the oral lesions . I've been one week without the oral lesions. I still seem to have all my other symptoms Headache nausea joint pain GI issues but I will take the lack of oral ulcers

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I’ve been on humira for roughly 3 years now. Unfortunately it is not strong enough to combat a flare all on its own, I’ve had to combo it with Imuran.

It works well at keeping most of the pains and ulcers at bay. However, does not control headaches.

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Do you have Neuro Behcets too? I was hoping it would help the unbearable headaches and neurological symptoms. It is worth a try. Imuran? I will have to read up on that one. Thank you so much for sharing, I wish you all the very best.

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Hey,

No I don’t have Neuro Behcets but I do get migraine headaches from time to time due to being anxious. Taking an antidepressant to calm my mind and seems to be working ok. Before the antidepressants, I would get headaches often, now maybe once a month.

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Thank you so much everyone for all of this information, it has been really helpful and encouraging. I hope to start the Humira this week I shall let you know how things go. Thank you again and I wish you always...health restored!

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