Hi, friends!
If it isn’t clear already, I am not so good at this whole blog thing. I write, I forget about it and wait way too long in between posts, but somehow I eventually return to it. ANYWAY…LOL.
Months have past and the last thing I wrote about was my body falling apart, the drug Sulfasalazine failing me due to migraines, wanting to start the drug Humira, and convincing myself that I have a whole other disease process going on. Since then, life has changed and finally for the better!
My doctors and I agreed that it was time to start Humira. I was fully on board and was excited to hopefully start feeling better. So what is the actual diagnosis? My arthritis is stemming from my Crohn’s disease officially making it enteropathic arthritis. Even though my joints are very swollen, it is considered general swelling around the joint rather than swelling within the actual joint cavity like in rheumatoid arthritis. I cannot believe that inflammatory bowel disease (IBD) can destroy my life this much. Not only do I get to deal with stomach issues, but my joint pain and swelling is truly stemming from the same disease process, too. I knew it could affect my joints, but to attack essentially every one of my joints and bilaterally this severely?! It makes me so mad. I hope people understand that even though I have an intestinal disease, it affects every part of my body.
February 12th was my Humira start day. I now inject myself in the stomach every other week with a pen full of extremely strong immunosuppressive medication. As of right now I am still on my other medication, Imuran (azathioprine), in conjunction with the Humira. Both of these medications are actually immunosuppressive and make me very sensitive to the sun so now it is a double whammy. Technically I shouldn’t be out in the direct sun for more than 20 minutes at a time I think is what my old GI doctor told me years ago, but who actually follows those rules? Especially in Florida. Whoops. Oh well.
It has been almost five months now of being on Humira and IT HAS HELPED! I can now walk around the mall and not be in pain by the time I get back to the car. I can wake up and not have to literally roll out of bed. I can sit through class and not have to debate with myself if I should take a Tramadol or not as I clench my aching knees.
I am starting to somewhat feel human again and it feels amazing.
You’re probably thinking that I am completely normal now, right? No. I still have my days. Sometimes I will wake up and for whatever reason I just hurt more that day than usual, feel fatigued, and just an overall malaise. It is just part of it. There are good days and not so good days. After I work 9 hours straight my knees do hurt and after two to three days in a row my knees and hips definitely hurt bad again, but after a day or two off of work my joints are pretty much back to my new “normal.” Weather also plays a role. I never knew that was actually real, but if it is going to rain my joints and body do just ache a whole lot more. It’s a thing.
So what does my future look like now with this new medication in my system? My GI doctor and I talked about trying to wean me off of the Imuran in a few months because the Humira should be able to cover both my joints and my stomach, but before he takes me off of it completely there are a couple of tests I have to go through first. A MRE and the dreaded colonoscopy are what I am talking about. They are a few months away though. Both of those are just to make sure that there is no inflammation going on inside of my intestines before we decide to stop a medication.
For now I am enjoying the effects of the Humira and hope that it can only get better from here. I am assuming that with each passing month and as the drug levels continue to build up in my body I will continue to feel more human and less zombie-like. So while my friends are out at the bars taking shots of tequila, I will be taking shots directly into the stomach via the Humira pen and right now I am content with that.
XOXO, Cait ❤
crohniecait49 