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Behçet's UK
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Humira Experience?

Hi all. rheumatologist is considering putting me on Humira pen. Having a very difficult time weaning off pred. He added in Otezla as well (in addition to cholchine). Interested in experiences with Humira. Thank you!

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I’m on Humara now. I used to have 3-4 really bad outbreaks a year. I have been on Humara almost a year and I haven’t had an outbreak since I started. It’s been amazing! I still have the joint pain and fatigue, but the ulcers have went way down.

I do an injection every 2 weeks. It hurts pretty bad but it’s worth it for me.

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Thanks for the reply. They are looking to put me on it for the fatigue, joint issues, headaches, cachexia, breathing problems. Pretty much everything else problematic! My ulcers come and go but hardly as severe as many folks on the forum. Appreciate your experience. I heard the injection hurts quite a bit. I have been reading up on how to manage the pain.

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Hi Stm252

I haven’t used this drug but just wanted to say that I hope you are feeling a bit better knowing you have a better diagnosis. 👍

Didn’t know about Behçets syndrome as never heard of it ! Read up a little and it can seems quite like sjogrens with symptoms, but its not.

Just interests me as I’m plagued with sores in my mouth at the moment I have them all over the inside of my mouth but are more like blisters/ulcers. Bloody painful. Seem to come out when my joints and everything else is flared up.

Any of you sufferers of this syndrome have any advice for mouth sores to help with the discomfort ??? 🤗

Joint pain I end up using codeine , paracetamol & Oramorph if bad in a flare but then I can’t drive but I’m not allowed anti inflammatorys due to only having one dodgy kidney now. So I’m not much help sorry.

Good luck, really home you find the right combo of medicine to relieve your symptoms

Mellisa 🌸

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Hi Mellisa. thanks for the kind response. Yes having the diagnlsis has definitely settled my nerves. We went round and round for moons wondering what was going on! I hope you too find some solace and relief. I wish I had some answers for you. But I am so new to this I don't have that much to share. Especially around then ulcers as that is not my primary issue. Wishing you lots of luck!!

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Hi

Just wishing you good luck , I am due to start Humira in a couple of days . I recently had a course of inflectra but had a lupus reaction to it , so my consultant has decided to start me on Humira. I have been in a flare for a year and have to use a stick to walk when I can...lol . But still fighting . I will be thinking of you. Big hugs xx

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Good luck to you! Keep me posted how you manage on this!!

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Hi Stm252

The difficulty in weening off pred might be because you are coming off it to quickly. The last time I came off it I went down in 1mg stages, a long and slow process.

What is your weening protocol?

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Hey Dogwind. My other rheum was trying to do 5 mg per week which was crazy. My new rheum is basically figuing out what works. He has me now at either 0.5 mg or 1 mg per week or every two weeks or three weeks. This seems more reasonable now for me to manage. And we are communicating and I am having much more frequent appointments!

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Hi Stm252.

Thats good to hear, sounds like this new Rheum is a little clearer in their thinking. Hope it all goes well.

With regards Humira, you can get either pre-filled pens or pre-filled syringes, try them both to see which method of administration suits you best. I prefer the syringe, more control and it hurts less. Coincidently I time my injection for a 'wet' night.

When starting Humira I had my Pred dose bumped right up, with the gradual weening, and an initial double dose of Humira. I was told that the high dose of Pred would ensure that any symptoms were quashed thereby allowing the Humira time to get its feet under the table.

Humira has been great for me though it doesn't address all issue all the time, those that it doesn't are tolerable. Luckily it does cosh my major symptoms.

Hope it works for you.

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I am REALLY hoping. Hope is eternal right?! 😀

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Hope, optimistic state of mind based on an expectation of positive outcomes with respect to events and circumstances in one's life or the world at large.There is no alternative!

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I have psoriatic arthritis in addition to Behçet’s, so i was able to get insurance coverage for Humira. I have found Humira most helpful when combined with Methotrexate.

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How long do your injections last? I actually had relief for about 6 days and now I am in horrible pain. I feel beyond bad. Wondering what this is about. Thoughts? Due for my next did in 4 days.

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The injections last about three days each, so I stagger Humira and Methotrexate to encompass a full week. You’ll need one day per week per injection to kind of curl up in bed and be super-quiet. Kind of like having a 24-hr bug.

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