Otezla and Headaches: What Users Say (Page 2)

• CGK...
• Taken for less than 1 month
• March 25, 2019

For Psoriatic Arthritis "Just started taking Otezla on March 20th. I started out with the low dosage, and I am now currently at 30 mg twice a day. In 6 days, I have lost 4 pounds, mainly from the diarrhea, and have had some headaches. However, I will keep going with this as I am waking up with no stiffness or pain from the psoriatic arthritis, which is a huge bonus. The only thing I really need to watch is the insomnia. Last night was not a good night for me as I tossed and turned all night, but that very well could be from the prednisone I am also taking, but only for another week or so. I am hopeful Otezla will continue to work for me because I refuse to take biologics that my doctor wanted to put me on."

• Jmj...
• April 29, 2016

For Plaque Psoriasis "Initially stomach ache, diarrhea, and headache, feeling of unease. After 2 months, most side effects gone. Never any at night, so I make sure I take on a full stomach. This helps me. It has been highly effective. Psoriasis started to clear within weeks. Now 99% clear. When a spot shows up, I hit it with one or two doses of topical, and it's gone. So far, great."

• Lyn...
• August 19, 2016

For Plaque Psoriasis "I was optimistic about Otezla because nothing else worked. I tried Humira, creams, Kenalog injections... everything. The 30-day sample pack was like a miracle, and then the letdown happened. My psoriasis got so bad that it was bleeding, and my depression was crazy. The headaches were every day, and I was screaming and crying for no reason. I stopped the Otezla, waited a month, and tried it again to make sure I was right. Unfortunately, I was correct. Otezla didn't work for me."

• Jak...
• Taken for less than 1 month
• September 4, 2016

For Plaque Psoriasis "I was prescribed Otezla 10 days ago for severe scalp and ear psoriasis. My dermatologist gave me the starter pack while I was waiting for insurance approval (which I just obtained), and in this short period of time, I have noticed a nearly 50 percent reduction in the itchiness and scaling, which was so bad that it often bled and my scalp was painful from just a shower. I have a salt-water pool, and the water stung so bad I tried not to get my head wet. I am astounded that I am already seeing a difference. I am even more astounded that I have had zero side effects. I was prepared for nausea, diarrhea, and headaches - anything to get relief from the misery of constant scratching, scabbing, and just plain pain. It hurt to even brush my hair."

• Les...
• September 12, 2016

For Plaque Psoriasis "I've been on Otezla a little over a year now, and I think I will be stopping tomorrow after I visit my dermatologist. The pros: much of my psoriasis cleared within weeks, especially on my neck and scalp. When doing UV treatments with the Otezla, I was near 95% clear. I had all the side effects, like tension headaches, stomach issues, and weight loss. However, I would take that and clearer skin over my psoriasis. I've had psoriasis for 24 years now, and I have tried everything from steroid creams, UV, and biologic injections. I thought Otezla was the best! However, over the last month, I have been experiencing anxiety and depression. I get stressed out so easily, and having panic attacks has never been me. I cannot function normally."

• jus...
• Taken for 1 to 6 months
• August 25, 2018

For Plaque Psoriasis "Otezla; my back hurts again, daily headaches, and feel so tired every day! Wake up with leg cramps every night. Like jumping out of bed because they hurt so bad. I'm a painting contractor on ladders every day, my legs feel very weak and shaky. Besides that, my teeth and nails throb. Back pain! It's absurd how bad it hurts. My energies are so low..."

• Mol...
• December 1, 2015

For Psoriatic Arthritis "I was on the 28-day starter pack, made it to the regular dose of 30 mg 2x a day. Severe headaches like I have never experienced before, I have had migraines for over 40 years, these were worse. MD reduced the dose to 30 once a day. Still had some headaches, jaw pain, and nausea. The side effects have outweighed the good-no real improvement in hands-will stop taking Otezla. It also made me extremely moody and angry."

• Sha...
• Taken for less than 1 month
• October 30, 2016

For Plaque Psoriasis "Just one week in, and my scalp is almost 100% clear. My forehead is 100% clear. My stomach, sides, back, and legs have stopped producing scales and are starting to clear to a light pink, not red and angry anymore. The only side effect I am having thus far is the tension headaches, for which I started taking ibuprofen when I start feeling it come on. So far, I am very pleased with the medication."

• HRi...
• March 3, 2017

For Plaque Psoriasis "I'm on Day 10 with this medication and am already seeing significant improvements in my psoriasis! My doctor told me it may take a month or more to see any change, so this is a pleasant surprise. I had read about the side effects and was expecting the first while to be rough, but man! I can't keep anything down, and the diarrhea is unreal! I've found aspirin helps the headaches, so those aren't so bad. I've lost 8 pounds since I started Otezla, which is a bonus, but I wouldn't say it's the best diet plan I've ever been on... I'm hoping the side effects subside as my body gets used to the medication, and I'm very hopeful to see more improvements in my psoriasis!"

• car...
• Taken for 6 months to 1 year
• May 9, 2016

For Psoriatic Arthritis "I have tried other biologics and nothing worked. I started on the Otezla and immediately started to see a difference. I have Sjögren's syndrome secondary with dry mouth and dry eyes, and the Otezla stopped those symptoms and I was able to come off that medicine. My psoriasis is gone by 95 percent. I use a topical for the spot on my elbow. I occasionally have headaches and pain in my knuckles, but overall it is life-changing for me."

• MDS...
• Taken for 1 to 6 months
• February 4, 2016

For Plaque Psoriasis "I've been using Otezla for around three months now. I had some minor side effects of loose stool and headaches. They have subsided and don't affect me anymore. I'm probably 80% clear now. This time of year, I normally have a large increase in lesions. Not only have the lesions gone away, no new ones have formed. It will be nice to wear shorts and short-sleeve shirts again. For me, this med has worked great."

• cde...
• July 23, 2017

For Psoriatic Arthritis "Since the first pill on Otezla, I started to get severe sinus headaches that could not be remedied by Tylenol or Advil. Nasal congestion began shortly after that, as did steady head pain. I am now 7 days on the pills and I am stopping due to these headaches, loose bowel movements, sinus congestion and pain, headaches, and most importantly, insomnia! I have been up 2 days straight and have stopped these pills last night. Since being on these pills, I have not slept more than 2 hours per night, if at all. My foot pain has been lessened, as well as the pain in my fingers, but the side effects are just not worth it. Still getting sharp pains in my toes and difficulty with hip joint and knees, which I did not have before starting Otezla. Not the drug for me!"

• Gli...
• Taken for 6 months to 1 year
• February 21, 2016

For Psoriatic Arthritis "I've had psoriasis for 35 years and arthritis for perhaps 30. For about 9 years, I took Enbrel and methotrexate with very good results. Despite my long-term success with this combo, about 6 months ago, I decided to replace Enbrel with Otezla, primarily because I wanted to decrease my use of immunosuppressants and because of the cancer risks associated with Enbrel. For the first 2-3 weeks, I had the expected side effects, the worst being having to move my bowels 5-6 times a day. Also, some headaches. Now, six months in, I think I am ready to go back to Enbrel. My scalp psoriasis used to be almost non-existent but is now getting bad. Same for my elbows/forearms. I also have many aches and pains that I've never had before...."

• Pou...
• Taken for 1 to 2 years
• July 30, 2015

For Psoriatic Arthritis "I started taking this in August 2014. Initially, I did get the headaches and nausea. Once I got through the starter pack, it was starting to resolve. I have lost about 18 lbs, but that's a good thing. I'm not finding that it works really well for me - not like the injectables. I have large patches of psoriasis on my legs and arms, and a smaller one on my scalp. I'm using steroid ointment on these, but nothing is making them go away. I was still hurting pretty badly, even with the drug. My rheumatologist gave me something called Leflunomide 20 mg (Arava) to boost the Otezla. It seemed to work a little better for my joints after that. I am still on 5 mg oral prednisone and Diclofenac 2x a day for inflammation. I'm a pretty tough case."

• Huc...
• January 3, 2017

For Psoriatic Arthritis "I have been taking Otezla for about 8 weeks. I experienced nausea, frequent bowel movements, headaches, and a lack of appetite. Although the severity tapered off after a few weeks, they still continue. As I did more research into others who have taken it, I have experienced 2 trips to the ER due to inflammation in my feet, and I feel so fatigued and don't want to do anything...but I feel better if I move around a bit...but I get worn out pretty easy, and then my feet are killing me. I'd like to say I feel better than when I started...and in some ways, I do. I used to feel like my joints were fusing together, I couldn't walk up or down stairs, and I couldn't open a bottle of water. I feel a lot looser now and can do some things. I still hurt."

• Geo...
• Taken for 1 to 6 months
• June 15, 2019

For Plaque Psoriasis "I’ve been taking Otezla for two months. It started out okay, but now the side effects are starting - headaches, insomnia, agitation (including shaky hands), and extreme nausea. Not sure if this is related to the Otezla, but I have bronchitis, which is actually a side effect. My psoriasis hasn’t started to clear, so I’m going to stop. The side effects are too overwhelming."

• tjm...
• November 24, 2015

For Plaque Psoriasis "I've been on Otezla for 4 weeks now. I've had partial clearing on arms and chest. Still have plaques on my legs, but not as itchy as before. Scaling has been reduced. I do have 3-4 bowel movements a day, mainly in the morning and afternoon. Have not had nausea or headaches. No depression either. Some minor weight loss. I'm happy with the results so far and hoping that this is the answer. Been dealing with psoriasis for over 40 years now. Started on the scalp, but over the past couple of years, the legs have been the worst. Been using creams and UV light. The UV light did work at first, but then seemed to be ineffective. Never had the desire to use injections."

• Kga...
• July 18, 2019

For Plaque Psoriasis "I initially started Humira while in the military, and it worked wonders for me. I was basically clear of all psoriasis, and it also helped with my colitis. After retiring, I went without for about 6 months until I could get back in with another dermatologist. I told them I was previously on Humira, and she decided to go a different route? More creams and foams. Until I had a flare-up, and she decided to put me on Otezla. It worked, but at a cost. It’s been almost 3 months of Otezla, and the side effects have become unbearable for me. You have to make sure you eat something for sure, and you still might feel sick after taking it. Headache and nausea can be expected. I actually had to be prescribed Zofran because of it. I’ve lost at least 10 pounds also. All in all, it’s a struggle and a routine that’s hard to get used to."

• Rol...
• August 13, 2016

For Plaque Psoriasis "This medicine has been unbelievable for me. I am now 100% clear, with only a couple of dry places on my scalp. I was so completely miserable and in pain, but since I started taking this drug almost two months ago, I'm clear! My insurance refused to pay for it, even after my doctor petitioned a second time. I'm now in another fight for coverage, and I will continue to fight! I have had some side effects (severe headaches, nausea, sleeplessness), but it's worth it! While I know this drug does not help everyone, I love it and so appreciate what it's done for me."

• Anonymous
• Taken for 1 to 6 months
• November 14, 2018

For Psoriatic Arthritis "I’ve been on Otezla for almost 6 weeks for psoriatic arthritis. It improved my psoriasis almost immediately, but then the change slowed way down. No patches have totally cleared yet, though they do look better. No noticeable effect on pain yet. Unfortunately, the GI side effects seem to be getting worse instead of better, to the point where I don’t want to eat anything. I’m also consistently having headaches and increased fatigue. I’m going to try taking only one pill a day, but if that doesn’t get the side effects to a manageable level, I’ll have to stop."

• JP ...
• February 8, 2017

For Plaque Psoriasis "Been on it for over a year (with a one-month hiatus in there). First of all, I take psyllium husk fiber every day and have NO diarrhea... definitely recommend that people on (and not on) Otezla do that. Do get occasional headaches but not too bad. Psoriasis is under control. Had bad plaques but those are mostly red skin areas now. Biggest improvement on the face... which makes this worth it to me. I do enjoy the side effect of weight loss. Would definitely recommend that one with bad psoriasis give it a try (and stick out the first couple weeks). Still need to use a few topicals as well."

• Poo...
• Taken for less than 1 month
• February 15, 2017

For Plaque Psoriasis "I began Otezla two weeks ago. I have extremely bad plaque psoriasis on the palms of both my hands, including terrible itching. The condition started a few years ago, at age 55. So far, the Otezla is going well as far as not having the negative side effects. I have no diarrhea, only a couple of minimal headaches, and no nausea. I am hopeful the Otezla will work out well. With my insurance, I pay zero out-of-pocket."

• Nor...
• Taken for 1 to 6 months
• January 4, 2016

For Psoriatic Arthritis "My joint pain in hand and feet is all gone. The only side effect I have is a tension headache every evening about the same time. It's a good drug, I am pleased with it. Going to give it another month or two to see if the tension headache goes away, it's always on the right side of the back of the head. It helps to hear other people's side effects to see if any other people have the same effects."

• Anonymous
• Taken for less than 1 month
• August 12, 2019

For Psoriatic Arthritis "I took Otezla for 10 days, and I had to stop. At day 2, my neck was so sore I couldn't turn my head. Next came my arms, and then my whole body was so achy, it was affecting my quality of life. It was a tough decision to stop because I did lose a few pounds. I had constipation, so the stomach side effects did not bother me much. I also had really bad headaches, but that went away after 7 days."

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

For Behcet's Disease "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."