I'll try and keep it short. I was diagnosed with ulcerative pancolitis on my 31st birthday, February 2016, and was quickly given prednisone for a month and put on Apriso 3 pills 2x a day. I then got C. Diff which was absolutely horrible, FINALLY got rid of C. Diff after a long battle and then put on prednisone again to get me feeling better, this time for 3 months and have about a month left. Just before the Dr put me on steroids after I beat C diff, I felt like garbage. I could hardly get out of bed for work in the morning and my intestines were very sore and if pushed on the right side hurt bad. So when he prescribed my steroids, he also talked to me about Humira and wrote me a prescription and the insurance/pharmacy battle begun.
Now that all of that is out of the way, I'm supposed to pick up my first dose of Humira after work and I'm terrified. The dr told me about the risk of cancer and all that, but I went on a website and read patient reviews and wow. Now I know that people are more likely to complain than compliment, but their complaints are pretty severe. So my question is this, is Humira worth the risk? Another problem I have is that the only thing I can justify Humira by is the short window after C diff and before the steroids. So besides the obvious question of is Humira worth it, are there other oral meds I can/should try before just diving into the deep end? I'll be seeking a second opinion before I start Humira but just wanted to reach out to the community and see what everyone else has to say.
Thank you for taking the time to read this.
Reply posted for thatguy2133.
I have been on Humira for about 2 years now. It honestly was one of my only options left before surgery. I also take one pill a day along with the humira where before i was taking 24 pills a day without the humira. I still have a bad day maybe 2 times a month, but before i was having a bad day about 25 times a month. My pooping as decreased to about 1 or 2 times a day compared to the 8 or 10 i would go before.The only side effect i have had is joint pain.
Reply posted for kepwife12.
i was on humira for about 6 months. i got no bad side effects at all. however, i also got the same uc flare ups as before humira. so for me it was a pointless and complicated exercise in jumping through insurance hoops.
i have recently begun infliximab infusions. no negative side effects so far after two infusions. the third i postponed due to a bad cold, during which i began another uc flare up that is giving me *** now.
Reply posted for kateybell21.
Hi, thank you for sharing that. Also thanks for the tips haha. I can deal with drowsiness, I've been struggling with the fatigue from the loss of blood for some time now so I'm not too worried about that, plus I plan on taking the injections on a Friday so I have the weekend to recover if anything happens (fatigue, aches, whatever). As I stated in another response talking to my primary care dr actually made me feel a lot better about it. She told me that she is a naturalist and would rather not cram medicine (although she does prescribe) but she said that having pancolitis I don't really have a choice. She also said that Humira is the lesser of the evils which made me feel good. My mom spoke to her rheumatologist and she has several patients that are on Humira and none have had any of the serious side effects. My mom (who is a RN) has been on immuron and a couple other immuno-suppressants (vasculitis and MS) without any side effects. Speaking with different dr'a definitely put me at ease. I don't think I really have a choice. My prednisone is almost done (5mg now) and almost immediately all symptoms came back, blood, fatigue, pain that is indescribable at times......you know. I know if I don't get it under control soon I'll be in trouble, and I can't be on steroids forever as the side effects for those are worse than Humira in the long run. I hope it works for me as it did you. I just need this nasty skin infection to be gone so I can start. Hopefully Friday
Reply posted for wafu.
I have not yet, I have the loading dose in the fridge but have not yet taken due to a skin infection thanks to my steroids. It's a merry go round hahaha. But I did talk to several Drs and am much more comfortable about the decision. I hope all is well and it works for you!
Reply posted for kepwife12.
Kepwife12 I totally understand the questions at the end of your post as I went through all of that. Thank you for responding by the way, Ive been MIA dealing with all this haha. I recently dropped to 5mg of steroids and wow what I difference. I know everyone is different and my symptoms came back in full force and it made me realize that I have to take Humira. Its either that or stay on steroids and the side effects of steroids are way worse long term. Within a week the blood returned as did pain, fatigue, I got it all. I spoke with my primary care, she told me shes a naturalist but for having active pancolitis, she highly recommends me taking it and said its the better of the bunch. My mom (has vasculitis and MS) said she wouldnt survive without her shots and they basically have the same risk. Ive spoken with several Drs and all have good things to say... I finally made the choice to take it, now have to wait for a skin infection to go away before I can start 😔
Reply posted for thatguy2133.
Hey there!
I was diagnosed with crohn's disease in 2014 and it took me a long time to decide whether or not to take humira. So far i Have been on it for about a year and a half and have had no side effects other than drowsiness. Drowsiness seems to be the most common side effect. For me it has been a wonderful drug and has kept me in remission for almost two full years now. I understand looking up the side effects/reviews online (I did the same thing!) but the only thing I can say is that you wont know how it will affect you until you give it a shot. If it doesnt work then you'll try a new drug. I fully understand how intimidating the side effects can be but for me Humira has been a fantastic thing. If you decide to go through with it I would ice the injection site before and after to help with swelling and take it at night a few hours before bed that way if it does make you drowsy you can sleep right through it! Best wishes!
Reply posted for thatguy2133.
Hey did you try Humira, if so how did it go?
I have Crohn's and I'm starting on Humira in the next couple weeks, after having a year on Infliximab infusions.
Reply posted for thatguy2133.
Hi there,
My husband is essentially in the same boat as you on deciding whether Humira is really the appropriate choice at this point. He did not get c. diff (sorry about that, bet it sucked), but it just doesn't seem like his symptoms are really a "moderate to severe" level of the disease. He called his GI a few weeks ago 1) because he hadn't seen blood in his stool x 2 weeks almost, and 2) to see about getting a second opinion from another doc in that office. The MA that he spoke with said "you should just take the humira", and she said they did not do second opinions there because it would basically just be like transferring doctors and there was no point. So this has forced my husband to basically just make another appointment which is today, so that we can actually talk to the DOCTOR about whether he's making the right decision. It's frustrating. UC seems to be providing quite the mystery in our lives because it's just so hard to tell what his new "normal" is supposed to be, what does remission look like, and is Humira really as big of a deal as it seems? So, in the meantime, the Humira sits in the back of our refridgerator just waiting haha :)
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