I am writing this post as I have finally found a combination of medications which has allowed me to control my BD with some regularity. I will provide a brief description of my BD history, medications I have tried, and also provide the names of the medications which finally helped.
I was first hospitalized in may of 2012 due to an overwhelming amount of oral ulcers in my mouth esophagus. I was in the hospital for 2 weeks and they couldnt diagnosed me at the time. They had told me that it is a auto immune disease, however they could not tell me which one. The last doctor I saw while I was there thought it could be BD but could not confirm it.
At that time, we started to medicate with Prednisone to get rid of the ulcers. Over the next few years we began the long process of trying to wean off Prednisone while trying to find another medication which works.
First Med: Colchicine - Which honestly Did not work at all.
Second Med: Humira - Worked for a couple months but then stopped. We increased dosage to once a week and it was just not working. This medication didnt help with my skin sores and may of even caused more. Also I always felt super lethargic. After this they wanted to put me on Remicade but I refused because I didn't want to do an IV treatment as I didn't want to commit to such a harsh treatment for potentially the rest of my life.
Third Med- Otezla - Somewhat worked by allowing me to stay free of ulcers until about a week or so after Prednisone would be weaned off then the ulcers would come back and I would have to use Prednisode again. The worst part about Otezla was the depression. I felt like I was actually going crazy.
4th (combonation) - They added a small dose of Imuran along side of the Otezla - This actually worked alright and I had gone up to 3 weeks after the Prednisone wean without an ulcer. Treated it this way for a few months but at the end of the day it wasn't allowing me to completely stay off Prednisode which was my goal due to the horrible side effects associated with the steroid.
5th (Combination) - Imuran for daily treatment, Clobetasol Propionate "ointment" (topical for skin lesions), Clobetasol Propionate "gel"(topical for oral ulcers) - THIS WAS THE SOLUTION FOR ME. .....continue below......
After realizing that Imuran helped with the Otezla, I asked my doctor to allow me to try Imuran alone in order to avoid the depression caused by the Otezla. She allowed me to do so. We also spoke about trying to get away from the Prednisone rebound as we believed it was a key factor in my consistent ulcers. I had mentioned to her that Clobetasol Propionate "ointment" has helped my skin lesions in the past and I wish there was similar version for oral use. I did some research and found that Clobetasol Propionate also comes in water based Gel which was also not approved for oral use. I had a pharmacist friend of mine contact the manufacturer to determine if it would be toxic. Turned out it was not necessarily dangerous but it had not gone through oral testing so they could not approve it for that in the medical community. Once I heard it wasn't necessarily dangerous I requested from my doctor to allow me to try it and she agreed.
Early stages- Imuran alone worked similar to the combination of Imuran and Otezla together, except I no longer had the depression. About 3 weeks after weaning off steroids I got a couple ulcers and tried to medicate using Clobetasol Propionate "gel" instead of going back to Prednisone. What amazed me was that for the first time since my hospitalization, I got rid of the ulcers in 2 days which allowed me to avoid starting Prednisone again (end of 2016). I then had another oral ulcer about 2 weeks later, and I again was able to rid them within a couple days by using this topical treatment. As the weeks progressed, and I was off Prednisone for longer and longer, the Ulcers became fewer and further between and the ones I did get, I was able to treat within a couple days.
I have now been off steroids since November of 2016 using this combination of treatments. I no longer suffer from depression, or being lethargic, and my ulcers come back only a few times a year but honestly since I can rid them in a couple days they don't really bother me.