Behcet's Syndrome Society
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Do to a recent flare up after a Remicade treatment, roughly a week later, not because the Remicade. I had to increase my prednisone up to 32 mgs from 29 to where I was trying to drop it from 30mgs. I call it the itch, the feeling when you know the ulcerations are coming through and you cant stop them. I get that itch when i barely drop 1mg of prednisone. I tried 31 mgs 3 days and now on this the 3rd day i feel that itch feeling in the genitals area, nose, eyes are hurting, and rectum especially. Everyone's body is obviously different, but im on my 3rd month of Remicade so if this medicine was working I should be able to lower the steroids. The steroids have always what have kept the ulcers away and Humira had kept the joint pain away. Humira stopped working and Remicade is a biologic sort of like Humira so I am thinking that since these two biologics havent worked that I am probably doing more damage than good. I was also on Enbrel another biologic. Its that itch feeling that stressing me out, like i feel it in my rectum , through the genitalia, and mouth today so i went back up to 32 mgs and i know be awhile before this feeling goes away, i even tried 31.5 yesterday to see if would help. I have been on the steroids going on 11 years now and i know adrenal glands turn off and usually never turn back out because they dont need to work because the prednisone does work for me. I am eating less spicy foods and also adding in food with anti inflammatory properities. Any advice anyone. Any creams that have helped, obviously cant use a cream up inside my rectum unless cortisone suppisitory but then thats just more steroids. I know that maybe from the other meds that this isnt an option i get. The meds for osteoporosis and fibro and the rest of everything.

9 Replies


So I am not familiar with that "itch" you speak of but have you tried benadryl? Not sure what it would be called out there-im in Canada.The meds you take when you get an allergic reaction and or for seasonal allergies. These will help with inflamation and itch. Out of curiosity, how long were you on enbrel and how did it work for you? I've been on it since end of May and I swear a couple weeks later I staryed to get some good days...then it just kinda dropped off. Rheumy wants me to stay on it til Jan.14. Why??!! Not working. I'm seeing a specialist in NYC in Dec to see what he recommends.(paid for by moi) I'm curious about others' experiences with Enbrel-Thanks!


enbrel i was on for about a year. same thing, i was getting a few days of relief and then it just fell off, nothing. Then Humira. That lasted about 3 years and would get some relief and then that just stopped and now we are on Remicade. That itch i am describing is right before the lesions break through. The eating of the cells, the skin filling to a blister, then bursting and the lesion being there. We all get them in different ways. Its not an itch like benedryl would help its just how i describe the feeling before the lesion appears because its on the skin and its burning and itching and then all those fun things i listed. Enbrel gave me some joint relief, but not much. Watch out for those specialists in NY because they dont agree with pain medication and how much Behcets causes pains. not all drs agree that our disease is pain related and why they use Syndrome instead of disease. Dr Z i believe they say is not a fan of pain meds. That't the so called most knowledgable person about our disease but my team has been very experimental and I am willing to try. Better to try than sit there and thing they have all the answers and they look confused when it doesnt work. Good luck


No worries, my md will not let me suffer-he understands and is ignoring my rheumatologist's directives to me to wean off the opoids. She said " it starts to become psychological pain" ok lady-whatever! I'm a nurse and happy to "challenge " and speak my voice and knowledge to health professionals who try to poo-poo what I'm saying or BS me. The Dr. I am seeing is Dr. Yacizi the son of the one in Turkey. Is this the one you heard of or another? What have you heard? I am going for ideas on treatment because I am sick and tired of this BS and want some options/ideas on treatment. I will be firm upon my return thst we have to try something different. In the meantime I've found " mother's little helper" , when I have plans, need to do yardwork/housework,etc, I take a 25 mg dose of prednisone to get through the next 24-48 hrs. Other than that-i wait, sleep and pray that a medication will come my way and give me my life back:) Good luck to you!


Hi nurse_ratchet

Just read your post. I was interested if you sure Doctor Yazici? How did it go? I went and saw him dec 2013. He suggested azathioprine and enbrel as a combo.



Hi sorry I hope you don't mind me posting.

the itch with infliximab nearly drove me nuts they thought at first it was because I needed a different Tapering Drug (was on Cyclosporine ) then Methotrexate . In the end it was stop growths started on my face Its left a lovely big scar under my chin and took about 8 months to heal. It was maybe unwise of me but ive totally come off the steroids now (was on 100mg a day) it took most of this year to come off but being on them for nearly 15 years its started causing some problems with the heart. I am now on Humira its helped the eye problems and the joints feel a lot less Raw its not done anything for the Bowel though and still bleeding a lot so they have applied for me to go from 40mg to 80mg of Humira . Its a lot easier to use and no waiting around the 2hrs in the hospital its basically a zap in the leg and 3 mins its done. But the Itch is almost certain the Murine in the Drug are you allergic to small rodents? like Mice guinea pigs. ? I had no idea but an allergy like this can cause the runny nose. Itching etc



I think humira is all human - it is infliximab which has a 'mouse framwork for its active parts (or something like that. I was told there was no mouse in humira.


Yes, that's right.


well thats not the itch im talking about. its not always there. the "itch" is the burnoing feeling i get on the exact spot where a lesion will form on the skin or on the genitals. In that exact spot i can feel it almost like eating it from the inside, ITCH, then you can see the ulcer start to break through the skin. So the itch is not always and this has been since day one without medicines. I can feel the ulcers/lesions coming through at the spot before they do. Sometimes they have blisterred on the genital area like this bubble and then it would pop and then the ulcer/esion forms and start eating away at the skin. It just feels like this deep itch inside the skin at the beginning when the ulcer or lesion will come on the skin/genitals/rectum. It just feels really itchy and then turns red and either blisteres or skin rips open and there are the lesions. It is tough but no the itching is not always and its on all over. Its not from pain medications and its only when the ulcer is going to come through or lesion whichever people like to call them. No problem posting its good to get feedback. I was on Humira for 3 years but it just stopped working all together and the joing pain just got intense. We did Enbrel first and not really much help, then we did Humira and it seemed to work for that time frame, and now the Remicade mixed with cytoxan. They say with enbrel, humira, and remicade you should be able to start to lower steroids but this has not been the fact but with humira i did get down to 12 but then due to insurance denying me for about 1 month and a half because trying to renew the HUMIRA assistance program i had to go back yup to 30 and have never gotten back down from that and that was 2 years ago. Lowest ive been is 28 and then the lesions came right away. I hope that clarifies that whole "itch" thing. Not all over my body just when the ulcers are going to come through and on that exact location. Maybe thats just me and my experience. Like i do have a lesion on the brain and i felt the itch inside my skull and then the pain all throughout the body. Im hoping that with the MRI we dont find too many issues. They did on the last one. The white spots liek MS and gave me the Neuro Behcets diagnosis, but MS almost sounds exactly the same as Neuro Behcets so it makes me think like hmmmmm maybe I got that too. With how much medication i have been on and how weak my immune system is i mean who knows. I know i giot osteoporosis from prednisone and lost my testosterone and have glaucoma from it. Horrible but onyl drug to prove to stop ulcers and lesions for me. I just read up on Apremilast that this new drug had great findings for ulcers and genital lesions in patients. Its in trial but i think im going to ask my dr and maybe i can lower the steroids because when my lesions come it consumes the enitre genital area and into rectuma nd down the thighs and then mouth, inside nose. Ive been so worried with the eyes. They found a cataract and im worried if we do laser surgery to remove and fix it will that not trigger a ocular lesion. I know when i bit my lip or tongue ill get a lesion. I know ive cut my genitals when i tried to shave and BAM lesion next day. Sorry for such a long rant, but thats just me explaining it all.


Hi, I'm not sure if it is accepted medical practice however I did let my specialists know and they didn't stop me ... I use the kind of ointment for haemorrhoids, the one with something to stop the pain and itch (numbs the area) and has a certain amount of cortisone in it. There are other preparations if you didn't want to use cortisone. The main thing is to numb the area and get some relief! (Check with the doc first).

When I'm about to get a 'punched out lesion' on one of my limbs I get an intense itch for several days (as you said it must be the tissues breaking down). I've described it to the doctors but so far they seem a bit sceptical.

Saying that have two appointments over the next two days.

Cheers Lesley


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