REMICADE(Infliximab), is a biologic medicine that is administered via Infusion. It's a 2-3 hour process of sitting in a chair with an IV in your arm while sitting in a chair. For anyone who is going for treatment I highly recommend bringing something to do to occupy your time, and to bring a snack because you will get hungry. Before I could take Remicade I had to have prior approval from my insurance company, and I had to be tested for Tuberculosis. Once I was cleared I began the first 3 treatments, which are infusions of smaller dosages working the way up to the dosage that I would receive. Remicade is unique because it allows the doctor to prescribe a specific dosage to a person depending on weight, height, and severity. The first infusion takes place, and as long as there is no adverse reaction then 4 weeks later you return and have a 2nd dosage. After the 2nd dosage you return in 8 weeks and have your 3rd infusion, and for most people the infusion will take place every 8 weeks. I was on an 8 week regiment for about 9 months, and then I began to have a flare up around week 6 and a half so we changed my infusions to every 6 weeks. I have been on a 6 week infusion ever since. So what does Remicade do? It provides fast symptom relief that may take place in as little as 2 weeks, it may help people with Crohn's remain free from symptoms or have very few symptoms, it may allow healing of the damage to your intestinal lining, it may close or reduce fistulas(tunnels from the intestines to the skin or nearby organs), and it allows many people to reduce or eliminate steroid use. Steroids are used to prevent flare-ups, and mine were prescribed with an antibiotic until I started Remicade. Remicade allowed me to reduce my medication list by a tremendous amount. (Read more on Remicade www.remicade.com)
Before I started Remicade I was taking 13-16 pills a day of prescribed medicine. After Remicade I reduced my pill number down to 2-4 pills a day. This is a HUGE deal for me because I suck at taking pills. I have the worst time swallowing pills. It's like my throat knows that I'm about to take my medicine in the morning and closes up completely on me. No one can look at me while I'm taking my medicine because I can't handle the pressure. I need about 5 minutes per pill no matter the size. It's absolutely ridiculous, but that's my life.
So when I first started Remicade I felt amazing. I literally walked out of my infusion feeling 110% better. I didn't have a flare up for the 6-8 week period. I was eating well, and gaining weight. Before I started Remicade I weighed 99LBS. That's right 99LBS!!! I am 5'6" and a healthy weight is 125-130LBS. SO 99 was incredibly scary.
Notice Collar Bone, and tiny arms. This is what 99 looks like.
To date I have had 4 infusions of Remicade since my surgery...which I will get to soon and discuss. But ever since I have gone back on Remicade after a 4 month hiatus I have been experiencing issues. I get my infusion and I feel great for the first 10-14 days, and then I develop a fever, canker sores, abdominal pain, and loss of appetite for 7 days. My symptoms begin to go away and I'm usually just left with healing mouth sores after that, but I return to feeling great until my next infusion. This is my new cycle, and a nurse at our local hospital called it my "new normal", but here's the issue no one wants to feel like absolute garbage for 7 days out of a 6 week period. So I have talked with gastro. and he is sending me to another specialist, and going to be conducting more tests to find out if the Remicade isn't efficent or if I am developing an allergic reaction to Remicade. Has anyone had experience of this? Cause my gastro is as stumped as I am. SO until my next infusion because I just finished my 7 day cycle of being sick my doctor prescribed Pentasa. For anyone who doesn't know this is a horse pill, and I am going to have serious issues swallowing it but if it helps me to not get sick then bring it on. I'm hoping that maybe my body is just weird and as my doctor said I'm not acting like a "normal crohn's patient." So hopefully we will get actual answers so I can get my body under control, and live a semi-normal life. I know this is a very long post, but I hope it's been useful or opens up about me a tad bit more.
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