Otezla for Behcet's Disease User Reviews

• DrA...
• Taken for 6 months to 1 year
• August 18, 2020

"I have Behcet's disease and have been on Otezla for 5 months and have had zero (0!) ulcers. Had little red irritated areas, but didn’t ulcerate and healed in 1 day. Before Otezla, I had ulcers on a continual basis. All other symptoms are absent or reduced dramatically in intensity and/or duration: joint pain, numbness, tingling, headaches, red eyes, Raynaud's, insomnia, brain fog, general achiness, dry, blurry eyes, purpura. My skin heals normally now, rather than having a pathergy reaction occur (turning purple and taking a very long time to resolve). Only side effect: nausea if taken with water or juice. Otezla 2x/day with milk = no nausea. No weight gain/loss, and headaches are gone. Did not feel sad or cry while dosing up or since being on full dosage. If you're hesitant, try it. I read these reviews, and I was skeptical. However, I hope I never have to stop taking it. I am almost completely normal again, and the rare flare-ups are extremely dampened compared to what I was dealing with before. With the co-pay program, I pay $0."

• fhw...
• Taken for less than 1 month
• August 27, 2019

"I took this medication for 18 days and was really hoping the side effects would be minimal, as there are very few good choices for Behçet's disease (BD) and I do not want to take a biologic. Began with the starter pack. Diarrhea was the first side effect but was managed with Imodium. This was followed by increasing nausea, insomnia, and complete loss of appetite. Then crying jags set in. The final straw for me was the excruciating headaches that were not responsive to any medication. I became unable to work or function on this medication and had to discontinue. You couldn't pay me to take another dose."

• Tra...
• Taken for 1 to 6 months
• January 23, 2020

"I have had Behcet's disease for 33 years and can no longer take any drugs that suppress my immune system because after using Enbrel and prednisone, I developed two life-threatening systemic fungal infections. So we decided to try Otezla, considering it is a 3rd generation of thalidomide -- which has been used for Behcet's in the past. I used Otezla for two months before I just couldn't deal with the side effects. So I cannot recommend Otezla for these reasons: 1) it caused severe diarrhea and 8 lbs weight loss, despite treatments for these GI symptoms; 2) it caused severe headaches unresponsive to multiple other medications; and 3) it only helped my mucocutaneous ulcerations, which are annoying but not disabling, and did nothing for my painful Behcet's arthritis, CNS involvement, fatigue, peripheral neuropathy, and other BD symptoms. If your main symptoms of Behcet's are oral, genital, and skin ulcers, sure, go ahead and try it. But be warned."

• Mus...
• Taken for less than 1 month
• January 29, 2020

"I am on day 22 of taking Otezla for Behcet's syndrome. So far, the only side effect that has been bothering me is extremely sore breasts. (So tender that it’s hard to lay on my stomach when I sleep.) I have had no headaches, but I’m battling a continual stuffy nose that makes it difficult to sleep. Also, I’ve had a few crying jags and periods of feeling “low.” The good news is that I’ve been able to drop my prednisone intake by 4 mg since starting Otezla! So I’m going to push through and hope that my body continues to adjust. I’m excited to see if I can get completely off of prednisone by using this new medication. I will try to remember to come back in another month and leave an update on how I am progressing, taking Otezla for my Behcet's (which I was diagnosed with 28 years ago)."

• DrM...
• June 19, 2020

"I started using Otezla twice. The first 30 days it seemed to help, but when I stopped, I immediately developed psoriasis. I don't think it caused psoriasis. The 2nd time I started it, I had the same diarrhea and nausea as the first time, only after the 3rd week, I started having frequent migraines and severe low back pain. My oral ulcers went away, but nothing else. My pain medication had already been slashed down, making me bedridden. I just couldn't handle any extra pain. I believe it helped the psoriasis and the ulcers. If I could have been given medication to control my pain instead of the abuse heaped on those of us suffering, it may have worked. It caused severe diarrhea, which made me incontinent, but the medication Lomotil was even stopped because of the insanity of the opioid hysteria, so I was left incontinent! One thing I know is that people should not have to suffer uncontrolled diarrhea and pain because of hysteria over others who abuse illegal drugs! I have started Humira."

• Tif...
• Taken for 6 months to 1 year
• June 25, 2022

"I have Behçet's disease. Otezla is the only thing that worked for all my symptoms and ulcers. This helped me get back to my old self. The only downside is it is a costly medication, even with insurance. However, the Otezla company has a copay card to help cover the cost."

• Sal...
• Taken for 1 to 6 months
• April 19, 2022

"Was on Otezla for 2 and 1/2 months. Tried to hang in there. The mouth ulcers got worse, then I noticed a spot on my leg... Not sure if it has anything to do with Behcet's. When the doctor said it was psoriasis. I'm going to a dermatologist tomorrow, it got to be about 2 inches long and an inch wide, and then another one appeared. My lip became very ulcerated, and I had vaginal ulcers, which I have not had for several years. I had diarrhea, nausea, and headaches. My doctor and I finally decided that after that length of time my body could not tolerate it. The doctor decided that I needed to go on a prednisone regimen. It cleared up my mouth, but my lips kept getting worse. I am off the prednisone now for 2 days, and now I'm getting more ulcers in my mouth. I wish I had never heard of this drug."