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Could it be Behcet's Disease?

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
I was diagnosed with Behcet's earlier this week. The oral ulcers I get 5-10 times per year, usually one at a time, were a key part of it. It's a reason to celebrate after 20+ of years of not having a diagnosis.

I was prescribed otezla and am currently trying low doses with no discernible effects so far. The physician said that if it works, it will most likely only treat the skin/mucosal symptoms and not the neurological ones. Should this fail, what other medications can I expect next? I'm guessing IVIG would be very difficult to get approved for this.
Wow man, at least it seems like you may be on the road to possible other treatments. Maybe your case has been autoimmune all along?
 

Dmitri

Senior Member
Messages
219
Location
NYC
Wow man, at least it seems like you may be on the road to possible other treatments. Maybe your case has been autoimmune all along?

The potential opening of other treatments is the biggest reason to celebrate, although there isn't much available for Behcet's, and the FDA doesn't even have a single approved treatment for it at this time.

I stopped taking the otezla about ten days in. It was irritating my mucosa more and more , and mucosal irritation drives the neurological symptoms all over my body, felt like I was being poisoned. It's not an effect that is specific to otezla either, just about any oral medication I tried gives that same exact effect - antihistamines, gabapentin, etc. I can't find out much about what this generalized chemical intolerance means, my GI tract just seems very sensitive when it comes to anything "strong" or physically abrasive.

Autoimmune causes have been my first guess for a long time, and this reinforces it.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
The potential opening of other treatments is the biggest reason to celebrate, although there isn't much available for Behcet's, and the FDA doesn't even have a single approved treatment for it at this time.

I stopped taking the otezla about ten days in. It was irritating my mucosa more and more , and mucosal irritation drives the neurological symptoms all over my body, felt like I was being poisoned. It's not an effect that is specific to otezla either, just about any oral medication I tried gives that same exact effect - antihistamines, gabapentin, etc. I can't find out much about what this generalized chemical intolerance means, my GI tract just seems very sensitive when it comes to anything "strong" or physically abrasive.

Autoimmune causes have been my first guess for a long time, and this reinforces it.
Well, if you are able to find more autoantibodies, then it may open the door for IVIG! Thats what im going for as well
 

Dmitri

Senior Member
Messages
219
Location
NYC
Well, if you are able to find more autoantibodies, then it may open the door for IVIG! Thats what im going for as well

IVIG is what I have my hopes up for as well, and I'll find a way to try it before giving up. Insurance is unlikely to approve of IVIG for Behcet's, and the rheumatologist didn't believe it would be effective and prescribed canakinumab, which is even more expensive than IVIG and might not get approved either.

I'm still waiting (6+ weeks) for the results on small fiber nerve biopsies to come back, maybe it will be positive and that will strengthen my case.
 

crypt0cu1t

IG: @crypt0cu1t
Messages
599
Location
California
IVIG is what I have my hopes up for as well, and I'll find a way to try it before giving up. Insurance is unlikely to approve of IVIG for Behcet's, and the rheumatologist didn't believe it would be effective and prescribed canakinumab, which is even more expensive than IVIG and might not get approved either.

I'm still waiting (6+ weeks) for the results on small fiber nerve biopsies to come back, maybe it will be positive and that will strengthen my case.
I'm thinking that my case will be strong with myasthenia gravis (hopefully)

But I hope it all goes well for you man, keep me updated!
 

Dmitri

Senior Member
Messages
219
Location
NYC
I'm thinking that my case will be strong with myasthenia gravis (hopefully)

But I hope it all goes well for you man, keep me updated!

I'm not vesting too much hope into it, and I know that given all the treatments that failed for me, another one likely won't be a miracle, but IVIG has a striking track record for treating seemingly heterogenous chronic conditions, even if the rate of success wasn't that high for some of them. It definitely sounds better than taking riskier and more expensive targeted drugs.

The one person I know who got IVIG approved for Behcet's had it repeatedly denied for a year until the diagnosis was changed to MG, so it shouldn't take that long in your case. Good luck, and I hope you get to try whatever's available soon!
 

pattismith

Senior Member
Messages
3,968
I tried a pathergy test, and it's negative at 24/48h00. It's strange that I get a quick papule of 4 mm just after the needle prick, then it starts to fade one hour later ; (a positive pathergy test starts to show up some hours after the needle prick and is positive between 24 and 48h00). Iwonder what kind of reaction I have and if others have it as well
IMG_0256.jpg
 
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