Anyone on Otezla?

[Miataman]

I recently went to Mayo for a 3rd opinion. I was diagnosed with BD about 5 years ago and have been on 1G Cellcept for about 4 years now. I have very low symptoms. The one that has been the most annoying has been in my legs. I have knots that come up like they are going to turn into erythema nodosum then go away. Sometime the surface of the skin will get red. But as quickly as it comes, it goes away. My Mayo Dr told me about Otezla and said that it has helped a lot of people IF they can tolerate it. It has a high chance of causing diarrhea. He said that Otezla is much safer than the Cellcept I am on it also requires no regular bloodwork and will also have no effect on my immune system.

It sounds very good, has anyone been on it? Has it helped you?

[JeezLouiseNowWhat]

I am! Most of that is so, however, Otezla DOES suppress the immune system. Certainly less than many other medications, I take it and take 25mg of methotrexate injected per week, however it DOES suppress portions of the immune system. Yes, it can cause diahrrea but I find an antidiahrreal works well. It also causes nausea and I find that phenergen helps me with that. I have BD and Fibro, inflammmatory arthritis, raynaud's, etc., I DO find that the Otezla has helped with BD (no more oral or genital ulcers!! YAY- some skin ulcers still, but....) and with some of my small joint pain. It acts also as an appetite suppression, for me anyway, and I've lost 9 lbs in 28 days. I REALLY ho9pe that it works for you, if you give it a try!

Gentle hugs

Health and happiness

[duke22]

I hope it works and u can tolerate it. My son was given samples and he xouldnt tolerate it at all. He has tried several times and will try again. His problem is it makes him throw up and he had throat ulcers and cant tolerate bile coming in contact with them. We r in the US and insurance woukdnt pay for it. I was going to to to the manufacture (or figure it out) if he could tolerate it. He needs it to work as he cant take the biologics because he has leukemia and a bone marrow transplant previously and the cancer risk was too great for "maybe"

[Miataman in reply to duke22]

Gee wiz, sounds like you two have had it rough. Do you think it is worth messing with? I only have BD and am otherwise is excellent health.

[lesleyg in reply to duke22]

I really feel for your son as he sounds as if he has been having a very bad time of it. I would like to talk to you about the bone marrow transplant if that’s ok. Message me if you like. Thanks Lesley

[Stm252]

Otezla at first caused major diarrhea for me. And also headaches. If you csn push through, I know it helps a lot of people and is less of an immunosuppressant. I still to do this day have severe diarrhea but its related to other issues. The otezla helped quite a bit with my joint pain initially. I am presenting now 1.5 years later with more sxs but it helped to start.

[Number4]

I’m fairly new to Otezla, 4-6 months of use. I think it’s worth a fair trial to see if you can tolerate it. I think it is helping to hold back symptoms from worsening. Genital lesions are maybe getting better (such a slow process) and while I have newer oral lesions my derm thinks adding a local treatment of Clenbetasol will help that. I saw her today and she called in the Rx. Oops, it’s a gel instead of an ointment. A gel is alcohol based. Due to our Thanksgiving holiday I can’t have that rectified until Monday. Best wishes with the Otezla.