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mrmaid11 (@mrmaid11)

Behcet's Syndrome

Autoimmune Diseases | Last Active: Oct 7, 2019 | Replies (24)

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@onmylastnerve

Hi
Tough deal for your daughter. I know someone with that disease, complicated by a combination with another equally rare and more difficult disease.
I wish I could tell you there’s a simple answer, there’s not though.
It’s truly a systemic disease and many of the treatments given are more for pain management. There are some steroids that are sometimes used.
Prednisone colchicine Topomax Toridol, are some of the prescriptions involved in the past. Remicade was also considered but not attempted. (very expensive and again the treatments can sometimes be worse than the disease) I’m not an expert on any of them, and like you’ll likely hear that effectiveness will vary on each individual. Some of those are pain management.
( What I’m going to say next is not meant to sound like a horror story I’m just being honest, and I hope it will be taken in the way I intend it, although it’s hard to express in text)
Accept the fact it is incurable, don’t go to a doctor thinking this one will cure, there is no cure.
Don’t have a false hope that this doctor will “do it” the up and down emotional ride from that can be the hardest part, for the supporters of the affected, and the affected.
Some symptoms can be controlled/or minimized. You will likely see Neurologists and possibly Dermatologists, and Rheumatologists, one we saw was considered a local expert because he gave a speech on it once as part of a Paper he delivered to his peers.
Your area may have doctors with more familiarity than this area, you may need to explain to doctors what it is if you need to ie go to Emergency Room.
It’s not fun to watch someone go through a bout of this. In major flare ups it can last days or weeks, but it will pass, and things will return to normal in between flare ups.
I wish you and your daughter all the best it’s not a death sentence! It is life altering, but a reasonably normal life can be expected. Inform yourself when you can.
It’s hard to explain it all in text, but it’s ok to contact me if you wish. If you post here with my username I apparently get notified.

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Replies to "Hi Tough deal for your daughter. I know someone with that disease, complicated by a combination..."

Thank you for your response. Hopefully the future will. Bring some more sussessful treatments for this illness. In the meantime we must learn to treat our bodies kindly and carefully listen to the messages they send us. During flares the optimism wanes but returns once the flare is over.