Hello everyone! I'm new here and looking for support and info on bechets disease! I was diagnosed in February 2013 and it's awful

[Nicole86]

I've tried prednisone and colcrys and humira injections but nothing has helped. On Tuesday I'm going back to my dr in NYC for a new treatment plan. Has anyone tried a treatment that worked well for you?

[Dmartin138]

HI Nicole86. I was also on that treatment plan. What medications are you on? Have you been on the combination of medications at one time. I was on prednisone and Humira at the same time and that was working well for a few years and it stopped the ulcerations, but the joint problems never stopped and I have gotten osteoporosis from the prednisone. Currently I am on 30mg prednisone, Remicade infusions and Cytoxan infusions. I also have Reclast infusions for the osteoporosis. To be honest the prednisone has stopped ulcerations and there is a new medication in trials for people with bad ulcerations that cant stop. It is called Apremilast. It is in the works for clinical trials in stage 2 and is looking very effective for women especially. Colchicine didnt work well, cellcept, imuran, methotrexate. I have been through the ring. Keep your head up and as I am learning there are people willing to listen and give support. We all know how it feels to be dealing with this horrible disease. Is the NYC treatments your permanent dr? Good luck for your new plan. My name is Dean btw. Pleasure to write to yah!

[Nicole86 in reply to Dmartin138]

Hi! Thank you for your response it's an awful lonely disease. I have tried the humira and colcrys together, colcrys I had to stop because I had every side effect and could hardly get out of bed let alone walk up or down the stairs. Prednisone also does nothing for me. I live in CT and I do have a local dr for emergencies my bechets was so bad he sent me to a well known dr who only deals with bechets his name is Yusuf Yazici he only deals with patients dealing with bechets. I'm also in pain management because the pain of the breakouts is so bad plus I have bad back problems. Right now I have joint pain, ulcers in the mouth and lesions on my legs. I just am praying that on Tuesday I can be put on something that will work and fast as I don't know how much more I can possibly take

[Dmartin138]

so then i take it you are still on the Humira? Prednisone is a horrible drug so if you can stay away.. There is a drug called Pantoxyfillone that just was approved and works on ulcerations as well. It definately is a very lonely disease a lot more than most people can understand. I have read and seen what people have write about Dr Yaz. I guess anyone who says they are a specialist I think i just expect a lot more from them. i just know a few people who said the Dr is not a supporter of pain medication with our disease. Anyone that says this disease is not deserving of proper pain medication really needs to examine what is going on. Ulcerations in the areas we get them and how debilitating they can be. also the joint flares and musces aches. Well, Humira is definately a start. Have you tried any of the other anti-thf blockers? Enbrel, Remicade, Rytoxan,etc. They have so many now. I am not a big fan of them. Hopefully the Apremilast gets more funding. Talk wuth Dr Yaz about those two drugs because the prednisone at a high level stops my ulcerations, but it also created osteoporosis and terrible side effects and I will forever be on it because the adrenal glands turn off and then dont turn back on. So Apremilast and Pantoxyfillone i know are two newer drugs strictly for the ulcerations. Cant hurt to ask. Also joint problems the humira and anti0tnf's are usually the best with mild exercise and pain medication. Thats from my experience though and just reseasrch. I use to be a nurse before I got too sick to work and be around germs. I still have a few friends in the medical field , but our disease is not one that gets talked about a lot if ever. I am learning though that there are at least some people out here that know what i am going through as you are probably learning. I hope the best for you. Let me know how your visit goes. Im trying not ot lose my mind with this whole Obamacare nonsense. I am not on federal aide so him taking my health insurance is not great and then trying to sign up for new plans i cant yet, and the one plan i found was 675.00 a month and well who the hell can afford that. thats almost rent haha. Im rambling. Gives you something to read i suppose. Take care

[Nicole86]

Hey! Thanks for all your recommendations! I will defiantly be bringing this up on Tuesday! As of now I'm only on humira injections for the BD but I am on some heavy narcotics that make me somewhat comfortable opana ER 20mg bid and dilaudid 2mg tid klonopin 0.5 prn for anxiety oh and 800 ibuprofen prn I use to be in the medical field as well I loved my job I worked in trauma at Yale but that all came to a complete stop in 2011 I'd do anything to work again! Have my life back! The past two days have been pretty bad physically, mentally and emotionally! I'll just start crying from pain even though I take my pain meds sometimes nothing can take certain pain away! Dr Yazici I've only met once so he does not prescribe my pain meds I see an amazing pain management DR who has had me on just about everything and is always very compassionate which is very uncommon for those kinds of drs but I do comply with my contract as he does and I trust him very much! It's easy for people to judge my pain levels because I'm young 27 but not him! Anyway I really do appreciate you taking the time to reach out how long have you been suffering?

[Nicole86]

Oh and about Obamacare don't even get me started lol I'm not on federal aid either although people are encouraging me to try to apply but I know many people who have been denied and our BD as we all know not a lot of people are educated on the disease so I'm sure I would not get far. I do have insurance it's going up about 50$ in January but I already pay 420$ Plus co pays and medications are not cheap either! I completely understand your frustration though. I'm lucky I can still have all my drs though because going through new ones would be a nightmare!

[runninggirl08]

Hey nicole , just wanted to tell you to hang in there. I've had behcets for 30 years, have seen numerous docs all across country, including the wonderful Dr yazici. Like yourself, I suffer from extreme pain and have been hospitalized numerous times to treat my behcets. Three years ago it affected my central nervous system, I lost complete hearing and suffer major balance issues. I was a runner for 30 years and a triathlete for 12. The last five years have been complete hell. I cannot work and I'm lucky to be walking a straight line., I've taken numerous drugs, including humira. Did not have much success w it. I was on imuran for a year, and still having major symptoms, I finally just started remicade , so we shall see how it goes. Nicole, Just keep family and friends close and be an advocate for yourself. Don't let anyone diminish the severity of this illness but also fight for your life. I will add you to my prayers.