I had a great day on Saturday after seeing a pretty big blood clot on Friday afternoon, but Sunday night things went south pretty dramatically. Lots of bleeding, horror show in the toilet bowl, so I went to my doctor today and had a long talk about
what the heck is going on. He did another look and said what he can see looks the same as when I was in on Thursday, but the clots are worrisome. He said if they get worse go to the hospital. Of course he leaves the country for a month on Thursday, but is sending my chart to his on call doctor with notes to see me ASAP if I call.
We established a few things, some I like, some I don't:
1- this flare up is worse than he thought and perhaps a higher dose to start might have been better, although he is super conservative with prednisone.
2- I have to go up to 30 mg of pred for a week and taper slowly a week at a time so that I am on 15 mg for my scope scheduled for January 8.
3- I was worried that I have become steroid dependent. He said it is too soon to tell, do you guys have any thoughts on this? Every time I hit 15 mg the bleeding comes back, and each time it is worse. My doctor says he has seen this before and I just need to be patient.
4- I asked about
not responding to 5ASA's any more, he said that he thinks this is just a flare up, not to worry. We would know more after my scope and then we can talk about
5- I asked about
moving my care to and IBD center a bit over an hour from my house, he said we should talk after my scope, but that he would be ok sending my info there if things looked bad, but if they didn't, they wouldn't take me because they generally only treat the "more difficult" cases.
That being said, my face is huge! I am so sick of pred, I have been on it since November 2, starting at 20 and moving down to 15, only to go higher. It is making me nuts. Any tips on surviving another round of this evil drug? I made an appointment with my eye doctor because my eyes feel really scratchy and irritated, I'm sure this isn't a good thing. Thanks for your sage advice and support as always.
Current meds because my signature isn't right: 30 mg of pred, 4 shire generic lialda, colocort enema nightly, VSL #3, culturelle and reuteri.
Post Edited (momto2boys) : 12/11/2018 6:46:50 PM (GMT-7)