Finding My Way through Crohn's: Remicade, weight gain and other lovely side effects

Today I write you with 11 weeks of remicade under my belt. That amounts to only two infusions. So far I have not noticed many positive results from the biologic drug. But I have noticed some side effects. None of which I like very much.

The first 6 weeks with the drug I didn't really feel anything happening within me at all. No changes in pain or symptoms. The one thing I did notice was that my pants were getting way too snug on me. Now the great thing about summer is that you don't really have to wear pants. I have leggings and dresses to wear in the warm weather. Most the time they feel better anyway. Problem now is that fall is coming and sweatpants aren't as widely accepted as leggings and I don't want to look like I am sloppy lazy in public. Rmicade has made me gain about 20 pounds since I started it. Interestingly enough I haven't really changed my eating habits much either. The only difference is that there have been some events this summer in which copious amounts of food were available and I ate till I was full. That shouldn't constitute for 20 pounds unless I was doing that every day, which I wasn't. Now I researched it on line and found no studies that proved that weight gain was a side effect of Remicade. Some people believe that it is because my intestine are now actually absorbing all the nutrients that were before not being absorbed... My thing on that is that I wasn't having a nutrition problem before... I was having a completely different problem. My doctor tested my blood for minerals and vitamins and I was fine aside from low iron and B-12. Now just because there isn't a funded study by the developers of Remiacde doesn't mean that I believe that weight gain isn't a side effect. I was never malnourished in the first place. Anyone that is friends with me can see that. So I took to the forums for Crohn's to see if anyone else was talking about weight gain from this drug. Turns out a lot of other people had the same problem and some gained more than me. Still I can't find a definite answer and no doctor will tell you yes unless there is a funded study. So if I get really fat just know that I haven't been eating McDonald's and ice cream everyday.

At my second infusion I had an allergic reaction. This time though medical intervention was available so they didn't cease the use of it. See my Humira experience for reference in a previous blog. I was about 30 minutes in when all the sudden I felt this rush of heat go through me and I wasn't able to breath deep. I notified the MA of what was going on but my actual nurse was on lunch so they had to scramble to find the other nurse that was taking over for her. When they got to me with the IV Benadryl I was freaking out. I couldn't breath and my body felt like it was on fire. I got the Benadryl and all ended up being good. That is the good thing about IV Benadryl, it hits you right away and you can relax and get sleepy. Where as the pill form takes about 30 minutes to kick in and you have to suffer through until then. I have had a few scary moments with that. Anyways so the nurse had to call my doctor to see what he wanted to do now. Now that I had an allergic reaction we needed a game plan for either stopping Remicade or continuing on. So I had to wait and wait and wait some more. After about 1 hour of waiting they said that we would continue but at a snail if a pace. Now instead of the infusion taking 3-4 hours it was going to be about 7-8 hours. But that is better than dying so that is what I did. This day I also had to bring Brendon my husbands son with me so he had to witness that scary moment all the while being bored out of his mind. Luckily my husband works in seattle so he just picked him up after work and I was left to sit there and wait for the infusion to be over. So that was my last infusion and I am due for another in October.

Second Infusion before the reaction

Brendon bored out of his mind

Another lovely side effect of Remicade is the bill I finally got my explanation of benefits that lets me know how much of the treatment I am responsible for and holy cow. It costs about 13,000 to do one infusion. After insurance, which thank god I have, It comes out to about 850 per infusion. I signed up for a program called RemiStart a little too late so that 850 is stuck with me but hopefully the rest will only be the 50 bucks they advertise on the pamphlet.

My most recent experiences are from Labor day weekend and this week. Before my anniversary which was 8/24 I had called my doctor to fill a prescription for Metronidizole for me because I felt like I was getting my abscess symptoms again. They apparently filled it but it took the pharmacy so long to tell me that I was out of the country in Canada. So prescription is at the pharmacy and I come back from Canada and get it. Well Labor day is upon me and I don't want to be taking pills while camping so I wait one more week. I go camping and everything was fine until I ate a ton of sunflower seeds. I ended up with the worst pain I have felt since before my surgery. I was in desperate need of some pain medication and wasn't able to get any. I had to endure 12 + hours of pain. I knew that I needed to start my Metronidizole asap. So on Monday Labor day I took it at 11:30 AM and my dose is every 6 hours. I woke up this morning at 5:30 AM to take my dose. I woke up again at 6:45 and noticed that I felt itchy. I got out of bed and all the familiar areas of my body are itchy which correspond with hives. My first thought is "Great!!!". Now my antibiotic is giving my hives which is a bad side effect. Usually it should be stopped for good. I don't know exactly how many others my doctor, or any doctor has left in his bad of tricks. I am already allergic to Cipro a very common antibiotic and now Metronidizole. I know there are possibly 2 others that I have taken before. I don't know if I mentioned before that when I was at Valley I had a doctor that was just a specialist in infectious bactieria. He was trying to help clear up my then abscess with antibiotics and I was one 3-4 different ones. Man was I messed up on all kinds of pharmaceuticals. But I know that I have taken a few. But like a doctor once told me "You can be come allergic to anything at any time". No matter if I have take Metronidizole once or twice or three times before I am now allergic to it.

So that is what I am dealing with right now as I type. Hives and the eventual sleepiness from the Benadryl I took about 30 minutes ago. The itchiness is subsiding and soon I will want to climb back in bed but I won't be able to because I have to work. Today should be fun...

On the brighter side of my life I did just celebrate my 1 year anniversary with my husband! We went to Whistler Canada. It was so much fun. I was able to conquer my fear of heights. Over all an amazing beautiful place and experience.