Posted 1/15/2016 11:06 AM (GMT 0)
My story, it will get long.
My noticeable symptoms, meaning I was seriously starting to think something had to be wrong, started in July of 2014 and just in the last couple of weeks am I starting to feel good again, so be patient because it can take a long time to find what works and get better.
I wish I would have found this site sooner because I feel like my GI didnt handle my disease correctly at first. After diagnosis on January 7, 2015 I was put on oral Asacol HD but just 3.2g a day and prednisone. I didnt know anything about UC and figured I'd probably just be given a pill and be better. I was on this for about 4 months without getting better at all. Sometimes the pred was helping but then Id taper down and everything would come back. I never even knew rectal meds existed. I should have been given those and max dose of Asacol(4.8g) after about two months of the Asacol(3.2g) not working.
Then 4 months after diagnosis with no improvement from Asacol, he started me on azathioprine but only 25mg. That did nothing and then he upped it to 50mg but even that isn't a high enough dose. I tapered off pred, after being on it for 6 months, around mid July of 2015 and bad symptoms didnt come back, but in retrospect, I wasnt really better. My back was all messed up, I was going multiple times a day, somewhat formed at times but I wasnt bleeding or having diarrhea and didnt have intense urgency anymore so I thought I was better. This was right around when I discovered this site and started becoming active but still didnt know what I know now.
This period of me thinking I was better lasted about 6 weeks over summer of 2015 then I began to flare worse than ever before around Labor Day. He scoped me, I was still badly inflammed and he said we should try remicade. I also asked to raise my azathioprine dosage and we moved it up to 75mg. Around then I had learned that the typical therapuetic dosage for azathioprine was 1.5 to 2.5 mg per kg of body weight. So, as a 140lb male, I was still under therapuetic levels. I should have been on at least 100 to 150mg of azathioprine for it to work.
My doc was pushing for remicade already and I was just realizing that he probably didnt handle my disease correctly at all but since we were this far, I decided to just give remicade a shot, figuring he couldnt mess this one up and with my now knowledge Id make sure I was getting the correct dosage. I could have maybe asked about rectals and asked about raising azathioprine but figure maybe those will work later if remicade stops working. Also, I had read so many people say remicade was a miracle so I was ready for that miracle to happen after struggling for well over a year at that point.
After my first infusion I was feeling a lot better within a few days. Down from 15-20 bloody bms a day to about 3 or 4 formed bms. It amazed me. After a month of feeling pretty good and like I was finally on a path to remission, I flared again, bad. Right back up to diarrhea, 15bms a day, lots of mucous but not much blood that time.
The doctor told me it was normal as with the loading doses it can wear off before your next infusion sometimes. I had my third infusion a couple weeks later and it did nothing. I saw him a few weeks after that and he seemed baffled.
I was starting to think I picked up a pathogen so we got started on antibiotics. He moved up my next scheduled infusion about four days after I got on the antibiotics and I started to feel better almost instantly after that (4th) infusion.
I was still having urgency issues and was going on vacation over new years for a week so I decided to hop on a quick pred taper starting at just 20mg. I got on that December 28th. Within a few days of that I was feeling better than I have in years. My vacation was excellent, i was tapering down 5mg every 5 days. I was worried that symptoms might come back once I got to 10mg of pred because that always happened in the past. Yesterday I started on 5 mg of pred and will be on it for four more days. I also had my 5th infusion yesterday too. I'm down to 2-3 fully formed solid bms a day without any other symptoms. Starting to feel like Im finally almost better. Been a crazy last year and a half.
Anyways, I know this got long, hope you read it. But I think knowing this info can help you make sure your doctor handles you correctly so your suffering doesnt go on as long as mine did.
Oral Mesalamines > rectal mesalamines > immunomodulators(imuran/6mp) > biologics(remicade, humira, entyvio) seem to be the progression people go if the previous med isnt working.
Good luck and hope you feel better