Having worrisome side effects while taking Humira

I have been taking humira for over a year and started developing panic attacks after taking it for about four or five months. I continued to take it because my gi recommended it. I even went to the ER for a panic attack it got so bad. I decided to try to come off of it on my own since I felt like I couldn't tolerate such bad side effects. Shortly after discontinuing the humira I noticed frequent urination. I also developed a rash on my hands, feet, and chest.

Gradually I felt better I would even say normal mentally when I took myself off of humira for several months. I was urinating more normally and the rash had improved. After about six months of no humira I noticed some mild blood on the tissue. I then took a single dose that I had kept from being on it previously. The bleeding stopped. However a couple of days after the shot the panic attacks started again. I have been also dealing with frequent urination again which make me worried about my kidneys or bladder. Also the rash worsened. Does anybody have experience with similar issues? Following up with GI at the end of the month about trying something different. I am scared of trying another tnf blocker with all of these worrisome side effects.

Post Edited (adubb) : 11/27/2018 5:09:15 PM (GMT-7)

Hi Adubb, it is difficult to say if this is Lupus or not. Discuss it with your gi dr & if he is in agreement, then he should refer you to a rheumatologist. This is the dr you should see to have the appropriate testing done.

Since you have been on Humira, obviously your disease is moderate/severe. Not being being on any medication is taking a huge gamble.

Take care.

I have searched online and found that humira can be associated with adverse reactions. The two that seem to be most likely in my case are drug induced sarcoidosis or drug induced lupus. The neurological symptoms were the most concerning, but it is also important to note the rash, joint pain, pleurisy, and lymphadenopathy in my armpits. All the symptoms seem to improve when off humira for several months.

Post Edited (adubb) : 11/27/2018 5:15:02 PM (GMT-7)

Hi adubb! I’m new to this whole forum thing, but so glad I joined. I have never had a panic attack before in my life, and since starting humira 5 months ago I have had 2. I have really felt my moods are unpredictable. Something I have tried that seems to be helping is this meditation app on my phone. I listen to it at night while I’m trying to get to sleep and various times throughout the day when I’m getting that overwhelmed feeling. I also have lavender going in my diffuser thing at home all the time, which is probably a placebo thing, but I feel like it helps. Good luck with everything! Feel better

Thanks to you all for replying. I just had a followup with my GI today and he is open to trying something else if I want. My blood work looks pretty good, just slightly on the upper side of normal. Colonoscopy showed very mild inflammation. He is sending me to a dermatologist to check on the rash areas I've had since starting humira. It relieves me a great deal to hear that others were able to switch to another medication with success. I have taken remicade in the past and it didn't cause any side effects that I could tell, so maybe I will suggest that to my GI. I was also interested in entyvio since it's not a tnf blocker and that might reduce my chance of another bad reaction. My GI did order a urine sample to test for kidney infection.

Post Edited (adubb) : 11/27/2018 5:18:02 PM (GMT-7)

Yeah that is a possibility that I am aware of. If that does occur at least there are other medications available and I'm sure new ones on the horizon. However I have stopped and started remicade in the past and it always worked. I think my gastro was cautious of side effects while I was on remicade in my early 20's as a male. He was always suggesting that I come off of it when I'm feeling well. Very nice dr. but he retired. I will be so thrilled if I can find a medication that treats my crohn's and doesn't give me any crazy side effects like this anxiety I've been having.

@adubb I too had massive panic attacks that would last for 3 days following each Humira injection. My GI said "it's not a side effect." Ha! Shame on @iPoop for stating "It's that anxiety that is creating the panic attacks and frequent urination; not the humira."as a fact. That is a theory or personal opinion, not a fact. Clearly lots of folks here have had Humira cause panic attacks. That's evidence. I'm glad to hear you're feeling better, adubb!

I had a couple of questions 6catlady, or anybody else that may be of help. I am curious if you switched to a different medication after your reaction to Humira. I read your signature that says you follow(ed) a diet to control your symptoms. How did/does that work for you? I have tried the specific carbohydrate diet in the past for several months and felt very good, but I wasn't on it long enough to know if it could keep me in remission long term. I am considering going back on it but I am remaining skeptical since it's hard to back up dietary treatment with solid evidence. If done correctly it is a well balanced diet so I don't think it could hurt to try. Take care.