About a half-hour into my fourth Remicade infusion on Monday, I started feeling a severe tightness in my chest and difficulty breathing as well as intense and painful itching inside my right foot. After noticing how flushed I was, the nurse stopped the infusion and called my GI. The doctor told her to push 125mgs of hydrocortizone and then continue the infusion at a slow drip rate. When the nurse originally stopped the infusion, my breathing slowly returned to normal, and when she gave me the shot of steroids, the pain and itching in my foot died down. After she continued the infusion, I developed some very mild itching in my feet, but that was it. That was two days ago.
Yesterday I woke up with intense fatigue, severe joint pain all over my body (could barely move my right hand), swollen fingers, loss of appetite, and a mild headache. I took an 800mg ibuprofen (left over from my sprained ankle) which helped with the joint pain. This morning I woke up with all those same side-effects except the headache had gone from mild to splitting and was NOT remedied with the ibuprofen. In fact, it's still killing me as I write this.
I had an appointment with my GI this morning. Sometimes our bodies can create antibodies against the Remicade, so she ordered the bloodwork to test for these antibodies. However, she said that with the reactions I am having my body is no longer tolerating the Remi, and she doesn't want to risk another dose. This means our only options left (according to tradional western medicine) are Humira (weekly injections that are only about 40% effective for UC) or surgery to remove my colon. She knows that I am young and want to put off surgery as long as possible, so she's sending me to a couple of UC experts located at the University of California, San Francisco.
There is actually one other drug out there that the doctors don't know about. It is an off-label use of the drug, so not really discussed in the medical community but well-discussed by patients on the UC message boards and responsible for quite a few people going into remission. It's called LDN, or Low Dose Naltrexone. I won't go in to all the details about how it works here on this blog, but you can find out more about it at this website: http://www.ldnscience.org/. I asked my GI about it this morning, and she had never heard of it, which meant she was hesitant to prescribe it since she knows nothing about it. She said the experts in the city might know more about it and that I should ask them. Either way, I'm going to try to get on it before I try Humira or surgery.
The good news is that since I was able to complete my infusion, I have a good two months to figure things out before that dose wears off. Wish me luck, and I'll keep you all posted when I hear from the "experts".
T H I S W E E K ' S H E A L T H L O G
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My Condition: Mild/moderate ulcerative colitis since 1995, severe pancolitis since 2011.
Current Symptoms: Occasional (mild) abdominal pain, 2-3x per day.
Prescription Meds: Remicade, Asacol HD (4800mgs), nightly mesalamine enema.
Side-Effects: Severe headache, joint pain, fatigue, loss of appetite, swollen fingers, itchy feet, chest tightness/difficulty breathing during infusion.
Supplements: Creatine, BCAAs, CLA, glucosamine, whey protein (post workout), casein protein (before bed), L-Glutamine, Omega-3, calcium, vitamin D, vitamin C, biotin, multi-vitamin.
Diet: Breakfast - Kashi Go Lean cereal & soy milk. Snack - Activia yogurt. Dinner - turkey burger, sweet potato.
Exercise: None so far this week.
Stats: Height 5'7", weight 150 lbs, body fat 18%.
Have Tried: Imuran, Lialda, Endocort, Prednisone (dependent), Canasa, Cortico-foam, probiotics, L-glutamine, licorice, various other supplements, Specific Carbohydrate Diet, FODMAP diet, various other dietary changes.
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