Posted 9/23/2016 9:49 AM (GMT 0)
I was originally diagnosed with ulcerative proctitis February 2015 following colonoscopy. After various trials I did well on Canasa and Delzicol then I ended up very ill and testing positive for resolving Epstein Barr virus in March 2016 and have had a flare ever since. In March I had a CT scan for left flank pain that showed inflammation of the small intestine. Based on these findings and symptoms my GI doctor diagnosed me with Crohn's and put me on steroids and azathioprine, but that wasn't until July because she never looked at the scan. I wasn't happy with the management I was getting from that doctor and switched shortly thereafter. New GI doctor changed me from Delzicol to Pentasa based on the presumed crohns diagnosis and fact i was previously told I was B12 deficient, which he said further supported crohns diagnosis. He upped my steroids to 40mg x 2weeks to taper by 10 every 2 weeks and increased the azathioprine to 100mg daily. I was doing fantastic but once I got down to 20 mg I was right back where I started so went back to 30mg x2 weeks and increased azathioprine to 150mg and added Uceris. Also found all of my previous B12 levels and lowest was in the 400s so he said that wasn't low enough for a Crohn's patient and changed me back to Delzicol two pills 4 times a day from Pentasa. Following all the changes I felt great for about 10 days, abdominal pain resolved, had formed stools, only issue was night sweats which I figured was pred.... Then one night I woke up with such severe leg cramps I wound up in the ER. Once the cramps resolved I had constant leg weakness and muscle twitching. They said it was a medication side effect because my electrolytes were fine and told me to follow up with GI, he took me off the azathioprine for two days and told me to return to previous dose of 100mg thereafter. My night sweats resolved the two days I was off azathioprine and leg weakness/muscle twitching never resolved so he told me to stop the azathioprine all together. Now having more frequent stools, sometimes loose but mostly just long and skinny which is usually an indicator of inflammation for me and tonight I woke up with the same debilitating leg cramps. Now I'm questioning whether it's the Uceris or a side effect of the prednisone that's just coming to the forefront since I've been on it for so long. I wasn't crazy about being on the azathioprine to begin with because we want more children in the near future but I know I can't support pregnancy without remission. Anyone have experience with this? I don't know where to go from here and what to do next but I know I can't continue like this. Biologics are a last resort for my GI doctor because my TB testing was indeterminate and I'm a nurse (haven't practiced in 5 years and never had a positive skin TB test) so my exposure risk is greater and he's not comfortable with prescribing without a firm negative TB diagnosis. Needing some encouragement and experience here...