Behçet's UK
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Other Options When Usual Options Fail?

So I’ve likely had GI issues and some neurological issues going back to childhood, but I was an anxious clumsy child, and they seemed to improve somewhat in my teens. Maybe improved isn’t the right word, but theystopped getting worse. I was plagued by bouts of canker sores, then the fatigue and muscle aches cane into play. By 21 I had an appointment with a rheumatologist because there are a ton of autoimmune diseases in my family, the most prevalent being Lupus. Having had a few seizures and an increase in my wobbling, I was also seeing neurology at the time.

My first rheumatologist was nice, and put me on a low dose of plaquenil. He said I didn’t meet the criteria for Lupus, but he suspected I may be in the early development. From then on it was tests, skin rashes nobody could explain, and some steroids for good measure. I had begun to think the doctors who said it was all in my head, even the enormous GI bleeding, were right. The I finally got diagnosed with Behcet’s. I struggled with oral meds because of my GI Iissues and allergies. For two wonderful years I did and loved, Humira. Now I still had little flares but I thought I was okay, until it became evident things were going wrong. My symptoms just wouldn’t stay at bay and I was injecting two times a month. I failed several other injectable and IV drugs.

During this time I deteriorated and spent 9 says admitted to the hospital. I’d developed hyperactive reflexes, so severe I couldn’t walk on my own. Uveitis also came along. They decided to send me to NYU, where the decision was made to give Remicade a try, but only briefly. With my neurological system showing fine on MRI, but clearly not okay autonomic system wise, the next stop after that was IV Cytoxan.

Turns out my body doesn’t like Remicade and I can’t have it or any similar drugs. Apparently you can make antibodies to them, and when you do you do things like try and go into cardiac arrest to scare your nurses.

Six months of chemo, I had a few blissful months before Behcet’s came back with a vengeance. We have doubled and will soon add more to result in a tripling, of my cell cept. I try to eat enough but the nausea and pain are horrid, and the dizziness and fatigue don’t help. Steroids have helped stop the bleeding, but I’m still miserable.

Has anyone done unconventional treatments? I’ve read about plasmaphoresis helping in other autoimmune conditions, and it’s been used with good results in some Behcet’s patients, but it’s definirely not more than experimental at this point. I don’t tolerate a ton of oral meds well, even though I manage to consume the required pills to live (at this point). I wish I had a port because IV Zofran would definitely help.

5 Replies
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Hi Nerdychristina, so sorry to hear that you have been and are still going through the mill. Are you in the UK and if so, are you a patient at one of the Behcet's Centres of Excellence?

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Sadly I’m in the US. I’ve been to the clinic at NYU, but the Cytoxan idea was the last one they had. My doctor here isn’t sure what to do but increase my Cell Cept and do this steroid taper. I’ve lost 20 pounds in a month, despite the steroids, though for now the GI bleeding has stopped. The pain lingers, as does all the lovely nausea. My headaches are back, among with the oh so glorious balance issues. I’m losing insurance soon, too, so that’s not helping.

I just need a better treatment option. We may talk about methotrexate but with my GI issues and intolerance to azathioprine we are all doubtful about how that would go, even if we stuck to infusions alone. I’m just sick of a life of being poor but also being too sick to get out of bed 90% of the time.

Seems like they have all these options for more common autoimmune disorders, and I wish the same things could just be tried for me.

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Hi there, so sorry to hear all of this. We could try to put your Behcet's doctor is touch with a Prof at one of our Centres of Excellence in the UK by email. If you would like to discuss this with your doctor and ask he/she to contact us, we can try to arrange this to help you find the best treatment for you. info@behcetsdisease.org.uk Many people in the UK are using biologic drugs now and perhaps this is something your doctor may want to look into. Good luck and keep in touch.

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I failed out on a lot of the biologics (anything involving antibodies.) The theory is that I created antibodies to the antibodies and began attacking the drug like some mutant autoimmune monster haha. I guess we are going to move up to 2g daily of cell Cept (yuck) and periodic steroids, but I will put her in touch with people overseas. I just want better control of symptoms at least!

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Oh no! Good luck with upping the dose and keep in touch. Sending positive get well vibes your way.

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