The past month has been a busy one and I let the blog get away from me for a while, so, lots to update on. After my last colonoscopy we decided to go forward with remicade, an anti TNF therapy as my treatment. My doctor also started me on a drug called Mercaptopurine or 6-MP, which is an immunosuppressive drug that combined with the remicade would hopefully control the inflammation in my intestines. As always, both of these drugs have some pretty scary potential side effects ranging from TB, to fungal infections, to viral infections and lymphoma. Obviously its a balancing act in which you have to weigh the risks with the benefits to decide that these treatment options are right for you. When i was first diagnosed with crohn's in 2008, remicade was one of the first therapies i tried. After about a year of unsuccessful treatments, we discovered that my GI doctor in Buffalo had been administering the wrong dosage of remicade the entire time. I was essentially getting 1/10 of what someone my size should be getting. This caused my body to build up antibodies to the drug and made it no longer an option for me to use anymore. Because of that, i was a little surprised and hesitant when my doctor suggested we try this as our next option. There have been studies that show that combined with the 6MP there has been success with re-induction of remicade. At this point, my options are so few that i was more than willing to try the remicade again before moving onto a totally new drug. The remicade is administered via IV at an infusion center. Ive had treatments at several different infusion centers over the years but honestly the one at Mt. Sinai felt like a spa. There was a fully stocked snack bar, fridge, and recliners with pillows and blankets in a private room. Because I was being re introduced to remicade, my body had a higher chance of having an allergic reaction to it based on the antibodies i had created to it. Because of this, before the infusion starts they gave me Benadryl and steroids to help with any potential side effects. The benadryl knocked me right out and i slept through half the treatment no problem and watched movies with River the other half. Things were looking up, i was hopeful that the remicade would work, and spring had finally arrived in NYC. I've been keeping busy with work and working out, I've started a workout program called T25 and I've been feeling great about it. Some of Rivers family came into town at the beginning of April and we got to see a show and have a couple meals with them for the short time they were here. River and i have also been trying to take advantage of the nice weather by doing some outdoorsy things. Last weekend we walked on a path down by the river and let the dogs swim for the first time this spring. Swimming is something they have definitely missed since we moved to the city as they used to be able to swim everyday at the dog park we went to in Buffalo. We also went to the botanical gardens in the Bronx and got to walk around the grounds and see the orchid show they have on exhibit. This past Monday was my second remicade treatment. It was the day before tax day so i was hesitant to ask River to come because i knew how busy he was at work. He, as always, insisted on coming and I'm really glad that he did. About 30 minutes into my treatment I was having a really hard time breathing. It felt like someone was sitting on my chest and I couldn't catch my breath. I also felt like my skin was on fire. My face turned bright bright red and i got a blotchy rash all over my body. I was having the dreaded allergic reaction. River rushed out and got the nurses who all ran in and pushed more steroids and benadryl through my IV. It was a truly terrifying feeling not being able to breathe and trying to remain calm and not panic. All the gasping for air made me nauseous and i spent about a half hour throwing up. They were finally able to control the reaction and get me comfortable again, thankfully. The staff handled the situation very calmly and quickly which was appreciated. The next morning i met with my doctor who immediately said that remicade was no longer an option. This was a little surprising to me because the people at the infusion center said that it happens all the time and that they just give you more benadryl beforehand, but people are still able to continue. Apparently my reaction was pretty bad and she wasn't comfortable with moving forward with another dose. So here we are, months later, and back at square freaking one. Now the question once again was, where do we go from here. There are 3 anti-TNF medications, remicade, humira, and cimzia. I have now unsuccessfully used 2 of them, so the chances that i would respond to the third is slim. The problem is that there are not many other options out there. Several new treatments are in the process of being approved by the FDA and will hopefully be cleared by early summer. There is also another drug that the hospital is currently doing a clinical trial on that my doctor thinks i may be a good fit for. Theres a rare side effect with this drug that causes a fatal brain infection. The risk is very rare but its still obviously something to consider before doing the treatment. The last option is a drug called Stelera that is approved for psoriasis but not yet crohns. Its realllllly expensive and hard to get approved by insurance because crohn's patients need it in higher doses that are currently approved by the FDA. My doctor is going to try to get approval for the stelera or get me into the trial. All this means for me is that in the interim, i don't have any therapy other than the steroids which i am not back to taking a higher dosage of. 

I have lots to look forward to the next couple of months and I'm really ready to finally find a treatment that will work for me. The second week of May were heading to chicago with kyra, braden, and alli to celebrate my uncle Brian's wedding. I adore Chicago and River has never been so I'm excited to do that. The following week were finally headed back to buffalo! My list of things i want to do in Buffalo grows everyday. Were going to go to the dog park, the senior games for UB, visit friends from zettis and the daycare. The list goes on and on and i am so excited for it! We bought wicked tickets for my birthday at the beginning of June and then I am off to San Francisco for a week to visit with my cousins and cuddle with precious Portia! Lots to loo forward to, just gotta push through the next couple of months! 

Until next time, C