Dear Adam,
My name is Caroline. I’m writing to you because I need you to help spread the word that Humira is potentially very dangerous. I panic when I see just how many people are being prescribed Humira and I feel I need to share my story to prevent what’s has happened to me, happen to anyone else.
I’ve had colitis for 16 years. It’s been a very rocky road (as it is for everyone suffering with this debilitating condition) but right now, I’m ok. Well sort of. Read on!
Since 2003, my colitis has worsened and I’ve climbed the drug ladder. 3 years ago after a hefty flare up and azathioprine ceased to work, I was prescribed Humira. I was injecting weekly and to begin with, it was a wonder-drug. I was symptom-free within weeks. I was amazed. Little did I know that it was causing significant damage elsewhere. Within months, I was struggling to climb stairs, stand up or sit down and had excruciating pain in my knees. My gastro consultant sent me for MRI scans which later revealed that I had Avascular Necrosis (bone death) in both femoral condyles (the knuckle of the femur behind the kneecap). My legs were dying whilst they were still in my body. I couldn’t believe my bad luck.
I’m a wife and mum of two children and my illness had, to this point, already taken so much of me from my family and it was about to get worse. Daily activity was restricted as to try and help the healing I had to “do” less. Easier said than done, when you and your family lead an active lifestyle!
After more referrals to various rheumatologists and orthopedic surgeons, they decided I was allergic to Humira and it was the Anti TNF component that restricted the blood flow in my legs causing the necrosis. I had my first knee operation 6 weeks ago: an osteochondral allograft. Where they hollowed out my femur and replaced the dead/damaged bone with a donor bone. I have been off my feet for 6 weeks but we’re on the road to recovery now. I can stand and walk again. It’s been tough, very tough. Tougher than I ever anticipated. Tougher than any colitis battle I’ve ever faced previously. I have to have the other knee done within 12 months which is not a thought I am relishing.
Have you heard of this happening with Humira? If I had known how much damage and how much more my life would have been restricted I would never had accepted treatment. Hindsight is a beautiful thing, right? But I do want to spread the word. Maybe others are recognizing joint pain and when caught early enough they can be saved. I couldn’t bear to know that more people will suffer as a result of Humira. The pharmaceutical company also needs to be more transparent about the drug they are selling to unsuspecting, sometimes desperate patients.
I would be very grateful if you could help me spread the word. I realize, Humira helps thousands without and nasty, debilitating side effects but that was certainly not the case with me.
I would like to take this opportunity to say thank you for all the work you do in giving and sharing vital information with us UCer’s and providing a platform for help and support and advice.
I hope you can help.
Kindest regards,
Caroline
England.
Has had ulcerative colitis for over 16 years and has had some major bumps in the road based off the medication Humira which she talks about in her story.
