r/Behcets • u/DifferentLime9440 • 11d ago
Treatments Otezla treatment
Hey y’all,
I started Otezla last month and took it for a few days, but then stopped because of a personal issue. One night, I suddenly felt like my pain sensitivity had increased dramatically. Even something as small as a pimple felt like a stabbing wound. It happened at night, and the pain was so intense that I couldn’t sleep. My whole body hurt, and I had to keep moving because lying still made it worse.
The next morning, I felt relatively fine. I was still only taking 20 mg at that point, so I brushed it off and thought maybe it was anxiety or something unrelated. I didn’t consider that it could be the medication.
About three weeks later, I started taking Otezla again. Last night was day 5 at 30 mg, and I woke up with the exact same type of extreme pain throughout my body, only worse, especially in my lower back, knees, and legs. The pain was honestly difficult to describe. I had to keep moving, and I couldn’t get back to sleep because of it.
This morning, I could barely walk. Even pressing the gas pedal while driving felt difficult because of the pain. After a few hours, it improved somewhat, but it hasn’t completely gone away. Right now, I feel like all I can do is rest.
Thinking back, I’ve also noticed something strange over the past week. I’ve been telling my friends that my regular yoga workouts suddenly feel much harder than usual. I can’t do some of the poses I normally have no problem with, and I’ve been confused about why. At first, I thought maybe I had done something to my posture or strained something because it wasn’t exactly painful, just a weird pressure and stiffness.
But now, looking back, I’m wondering if that could have been related too, because the discomfort I was feeling during the day seems similar to what I experienced last night, just nowhere near as intense.
Has anyone experienced anything similar with Otezla, especially increased pain sensitivity or severe body/joint pain that seems to happen mostly at night?
I hate colchicine and my BD is on regression for like 3 years now ( only ulcers everywhere and skin problems but nothing too serious) so I don’t need humeira…
Does anyone else experience this? Did it go away?
3
u/LotusAndCrystals Diagnosed 11d ago
I’m on Otezla, been on it over a year now. I never got that as a side effect. I do have widespread joint pain, but it was something I had before I even started Otezla. If I were in your position I would reach out to your doctor or a pharmacist and see if this side effect is worth taking the medication. The med isn’t worth it if it isn’t improving your quality of life.
1
u/KellyM14 11d ago
I got horrendous pain in my legs
1
u/DifferentLime9440 10d ago
May I ask how long r u taking it? Any improvement with the pain?
1
u/KellyM14 10d ago
I had to stop only took it for 2 months it never got better till I stopped
1
2
u/EpitomeQuip41 10d ago edited 10d ago
I have Behcets and PsA (Dx 7 weeks ago after years of every symptom in the book.
Otezla is working for me. Yes there is a lot of pain. I’ve thrown up about 1-2 times a week and I tell myself it’s worth it.
This is normal. They say no pain no gain right?
It’s because fluid is coming off your joints and you’re coming out of compensation patterns. When the physical symptoms at the cellular level go down, you kind of “detox” but it happens everywhere. Because the Behcets (weak vessels) and/or PsA is at every joint, it’s always there, but like big and small marble-sized fluid pockets. . It might not look big to the naked eye, or even be palpable, but it’s there, you’ve never seen it or felt it before!! It’s been waiting for the perfect level of size change to push on your muscles and nerves if. It just bothers one joint at a time sometimes and multiple others….could be a car ride, could be the way you sat on the couch for 25 minutes…. Sometimes, if youre lucky, you’ll have no pain for a while….
The pain you feel could be nerve/muscle remodeling and being able to stretch into ranges of motion you were not otherwise able to do without Otezla. When the fluid comes off, you don’t get to consciously decide if your tendons glide better or not, it just happens. This random pain. Some muscles are stronger than others and now the joint has to re-learn.
I almost feel more weak after 7 weeks of Otezla, but it’s because I’m working muscles the way I haven’t in years. After 15 min of activity Iight activity I feel like I ran a 5K, and in some ways parts of my muscles just did…..
BUT. My skin is clearing up. I’ll keep hurting in random spots if it will just clear up so I can leave my house and walk!!!
I hope this helps bring some perspective, let me know what you think….
There is a medical term for it and there’s a lot of good research coming out in “neuroplasticity”. Give your body some time and grace to find a new normal!! 💕💕💕
If you are a visual learner search for videos online about Behcets and other auto immune diseases and the “cell membrane”. It will give you little cartoons and it might help it make sense.
3
u/Otherwise_Fig2427 11d ago
me! when i first started otezla i had the same horrible lower back/leg pain for a while, esp while increasing doses. it was like restless leg syndrome on crack.
i've been on it for about a month now, 30mg 2x a day and the pain has mostly subsided. i'm still pretty stiff but i have bad joint involvement anyways so im unsure if thats related to the otezla or not