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.
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JulienF
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Thank you for your post. It’s great information. I’m in the pre official diagnosis stage so I’m not on meds except for one flare when my family doctor put me on high dose prednisone for five days. Waiting for my opthamologist and rheumatologist appointments in June.
Good luck Colleen. I was in a pre diagnosis stage for about 3 years. I was only officially diagnosed after we did a genome test to identify whether I had the HLA B51 marker. May be worth it if they are having trouble diagnosing.
Thanks for sharing, this gives me hope :). I am in a state currently the ulcers are travelling down my throat. I am waiting for my first assessment in June. Currently I am having eye drops for uveitis and its leaked down my throat a bit, which seems to have 'released' a few of the long term larger ones at the top, for want of a better word that I have been unable to get at with steroid cream and a cotton bud. The med you are using sounds perfect because even only tiny amounts of eye drops, I have noticed my body doing its usual reaction to any kind of anti inflammatory med. I swell up! I even had to stop the 75mg aspirin I need to stop my high level of platelets trying to kill me should they randomly shoot up. There is no way I could risk taking steroids. This worries me.
I prefer a topical treatment over any form of pill injection as they have yet to cause depression, anxiety, make me lathergic or cause many of the other horrible side effects. But I understand about the issue with not reaching some areas. I have used all sorts of odd tricks. I have even gone as far as using as using a soft tip syringe to be able to get it Che chlobetesol gell down part of my throat.
I am contemplating a steroid nasal spray to try get it in that way. The ones they use for hayfever. My other problem. is the horrific taste and constant mucus. This flare is a good un it's set everything off in my head and is spreading into my upper chest/gullet area. My blood test last week clearly discounted infection, if it had not I would say i am seriously suffering from a really nasty one, a whole head and neck one. Funny bloomin disease .. NOT! I would go to my GP but its a complete waste of time I only saw him last thursday and he saw the state I was in and how difficult it was for me to speak and breath. Just oh well you are in the system now.... grrrrrrr I made him look at my ulcers
Ouch. Sorry for your troubles. I’m interested in hearing how the steroids nasal spray works out. Makes a lot of sense as it would drip down your throat. My experience with doctors trying to help me with my behcets has been very bad. Other than my current rheumatologist who lets me experiment, all the others have made me worse. I don’t really blame them but they just don’t know much. They have maybe seen 1 or 2 other behcets patients in their career and I feel like they like being able to say they have a behcets patient as it’s pretty rare here in the USA.
Unfortunately with this lack of experience, it’s soooo vital for us to learn and try and experiment ourselves (obviously with doctor approval). If I had listened to my original rheumatologist, I would probably still be on prednisone (how many years can someone acually do that) and would also be having monthly remicade IV.
I think its working, but hold the front page on the throat, adenoid and upper yes I think it is. The nasal spray is helping with the mucus, which is very good. Oh and the eye drops have shifted a swollen parotid gland that's been there for about 6 years. I thought it was just the shape of my face now, it was even there on the MRI's and no one said it was abnormal. It's gone now, no pain, skin droop, unfortunately its on the palsy side so practise lifting required. Other side looks swollen now, but not significantly
Lol Just found an old 2008 Prof Moots doc and apparently many of us have used this before, mainly for upper nose ulcers and just about everywhere else it seems inc back of throat. Although my aim is to get it at my adenoids and parts of my throat all the way down just squirted now, It smells funny.
So glad you added this post of your full history of medications and their effects after our chat on another post.
This is really comprehensive and helpful to all.
Are you in the UK or elsewhere?
I know that the BSS Chair Tony reads the posts to find any help ( and give valuable advice) to members and new sufferers but could I suggest one new job for you?
Just thought that your successful treatment in combination, especially the use of the gel and ointment could give valuable research data to the specialists in the Behcets Centres of Excellence worldwide, saving them and their patients valuable time in trying new combinations to find quicker success in medicating BD , especially in relation to ulcers.
Would you be willing to send a message by email to the Behcets CoE in UK and to the BSS to help assist them in their work ?
Thank you so much , I would definitely suggest any patient seeing this post who is still struggling to get the right combination of meds takes a copy of your post to their own doctors to see what they think about trying your combination too.
Thank you for driving me to write my post. For a little while now I have been thinking to myself, I wish there was a way I can pass on the things I learned to others with the same condisions. Joining this site and replying to people was my first attempt at contacting others like me. By all means I have never met another person with BD and I don’t know if this same treatment would work for others, but if it even helps one person like it did to me, it would be so great.
I live in California but my family comes from Europe and the Middle East/caucus regions. I don’t mind writing to the individuals you mentioned. Would you be able to private message me their emails or some other method of contact.
To quote Blearyeyed : ” Would you be willing to send a message by email to the Behcets CoE in UK and to the BSS to help assist them in their work ?" I really think you should. I appreciate, as you say, we are all different and can sometimes react to the same medications very differently but if you manage to assist another/others to find a solution it can only be a good thing!
I discontinued Otezla due to depression and it stopped working after a few months. The depression arrives quickly and intense. A dermatologist I saw commented to me he doesn’t think it should be prescribed to anybody due to the intense depression. I am a self-disciplined person and the depression knocked me down full force.
I would like to know if anyone has a positive long term relationship with Otezla or if it’s really the same for everyone like the doctor said.
Best wishes to everyone and feel well ❤️
I am currently taking Colchicine and prednisone and the fatigue and arthritis are brutal. I have had few Behçet’s abscesses and the bowel bleeding and mucus have been suppressed sufficiently. I have been on prednisone 5mg for over a year, increasing to 50mg November 2017, and down to 25mg currently. I was so functional I was almost like a healthy person at the higher dosage.
I know one other person who used Otezla and the depression was in full affect for him as well. SO I do think its everyone.
25 mil for a extended period of time doesn't agree with me, Nobody should be subject to long term steroids, especially cause it just masks the problem. Realistically, our body becomes so depended on it that without it the behcets comes back with a vengeance. I cannot stress enough on how quickly the chlobetezol "GEL" works to get rid of ulcers topically. Before using the gel, every time I got an ulcer I would knew that the only way to get rid of it would be through prednisone (about 2 weeks to rid the ulcers on predisone). The last time I got off prddnisone I got ulcers again but just tried to religiously take care of it with gel and avoid steroids. IT WORKED!
Hi, thanks for your reply. I was using Clobatesol ointment for three years on open abscesses that never healed. Last summer I started having heart involvement and sleep paralysis and no solid food for two years. I was bedridden when I was prescribed the prednisone treatment. The sores healed in seven days. I have had body wasting for almost five years as well. I am hoping to be switched to a safer drug ASAP. My doctors can’t decide which biologic and keep doing tests and I am down to 25mg of prednisone and can hardly get up. I see one of my specialists tomorrow and I hope there’s a better medication plan too. I am pretty sure I am feeling so much worse because of the length of time I am taking it and I am tapered down too low for it to help. I will update with good news I hope about a safer treatment plan. Even prednisone hasn’t helped me gain more than 10 lbs. I am eating solid food since prednisone too since zero ulcers. Most of my ulcers are internal so topical treatment has been good for the skin sores. Wish me luck 🙂
The depression is absolutely horrible. It's hitting me very hard right now. But they are waiting on starting the biologics so I started Prozac (sigh). WTF it's a never ending medication cycle to hold me over. Then I want off this stuff.
I could not handle the depression. I would rather go through the anxiety of prednisode than the depression of otezla. That stuff should be illegal.
Medication cycle is a never ending issue. They give you one medication which causes side effects, then they give you another one to control the side effect. Wishing you the best in finding an alternative to Otezla.
Ever try Plaquenil for oral ulcers? 200mg 2x/day totally stopped my oral ulcers. Humira and Methotrexate stopped my genital ulcers and also stopped the severe whole-body pain. The whole-body pain involves the bones and feels just like I did when I have a very high fever. You get the pain without the fever.
I havent tried it yet. It was an option for me but never got around to it. Humira made me lethargic. I cant put my finger on any side affects of the Imuran. Im sure there are some but I cant tell as they are so minor.
No change in prescription for prednisone. Doctor said she doesn’t have authorization to prescribe a biologic and I see my rheumatologist in ten days. The genetic testing was not processed because the doctor who ordered it doesn’t have sufficient authorization. I’m in Canada. I am as positive as I can be but I’m starting to feel burned out. It’s been five years since my health has declined to this this stage and I’m tired. I am sure many of you have been there. I will update after I see the rheumatologist and I hope he can do something to help. I had three months of decent health while taking high dose prednisone and now it just feels like I had just enough time to remember what healthy feels like only to lose it again. I know nobody is entitled to good health and it could be worse etc etc. I’m just disappointed I guess.
Sooo frustrating. My doctor originally declined my genetic test too. It was only after continually requesting it that he went above his standard process and authorized it. They dont like to do this because it usually has to be done by a third party. Maybe you can find a third party to do it directly. Its honestly just a blood test.
Are you willing to try the gel or something similar to rid the sores so that you can continue to come off predispose?
Great post Julien, I can relate to alot of your experiences. I'm currently on colchicine and imuran whilst tapering down off Pred. It's been a really tough year tapering down off the pred, feels like it's taking ages but I'm nearly off it. I also suffer from really bad throat ulceration and use topical steroids to treat them. I use a combination of steroid nasal spray and kenalog orabase steroid paste. The paste is actually available over the counter here in Australia. I have found it more effective in comparison to some of the more heavy duty topical steroids prescribed because it sticks to the ulcers and creates a protective layer which promotes speedy healing. You need to dry the ulcer first with a q-tip which can be tricky if it's at the back of your throat but I'm sure you know the struggle. Its the worst when I have ulcers in my throat that aren't visible or I can't get to, I currently have one in that passage between your throat and nose... thanks again for sharing your story!
You are welcome. I love to hear that someone else is on Imuran as well as I have had great experience with it. I have yet to try the nasal spray but I am definitely open to it if my current regimen becomes less effective over time. You are right, the struggle is real but we have to do what we have to do. Wishing you the best and a quick recovery from those difficult to reach ulcers.
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