Doctor Infuriates me, test results in

As you may remember, my FCP number was 75 in October (was coming off prednisone but was on Imuran and Remicade) and 775 in December while I was taking Imuran and Remicade and 690 in February just taking Imuran and changing diet as of Jan 1. Had to go off Remicade due to side effects. Stuck with a strict diet and started prednisone again first week in February when I noticed some blood - freaked out and asked to get on it - was afraid I was going to flare again....should have stuck it out and waited to see. I'm down to 15 mg. a week.

Doctor wants me to go on Entyvio because my FCP number was so high in December and February. Told doctor two weeks ago I do not want to do Entyvio and asked about taking mesalamine again. Told him I want to do more tests and see if what I'm doing is working. He said okay. Have to do FCP test every two weeks while weaning off prednisone. He did agree to put me on Lialda. I'm okay taking that. Less side effects.

Did stool test two weeks ago. Came back almost normal - 53. YAY!!! CRP also came back normal .03, which looking back at all my results, it's been normal since October. Scheduled colonscopy. Had it yesterday. Went from moderate/sever pan colitis to mild active colitis (no symptoms tho) in left side and rectum. Doctor called after he got the results (he didn't perform the scope, a different doctor did) and said you still have active colitis and we need to get you on meds now. WTH!! I called him back and said my FCP number came down below 500 like he wanted it to and my colitis is healing...went from sever to mild and is active only on the left side and rectum. He said, but you've been on prednisone. And I said, Yeah, and I was on prednisone, Imuran and Remicade when my numbers were 775 in December. He shut up. I told him I want to continue with my current regime and see how it goes after I wean off the prednisone completely. He said, I'm just looking after your best interest. I did tell him I was taking LDN, but did not tell him I was taking a crap load of supplements that my chiro is giving me. Something is working....probably a combination of diet, LDN, supplements and prednisone. I'm sure he is looking out for my best interest, but stop shoving these darn meds down my throat and lets see if we can control it through diet and meds with less side effects or the least about of meds to keep it at bay.

I am so done with these doctors! Sorry, just had to vent!

I wouldn't let it get to me. It's their job to try to get things to "make sense" in their terms. If what you're doing is working, and keeping your FCP down, and your symptoms show the same, I'd keep doing it. It's possible he is right to be concerned. I always did amazingly well on prednisone and things got nasty quickly after I tapered off. Sometimes I'd even get a good month or two following a course, but UC always came back with a fierce vengeance. Not to say that will happen to you, but i am sure that's what he's seen often and worries about. It's very possible the LDN and supplements are exactly what you need. Only time will tell.

If your symptoms are well-managed, I wouldn't worry too much about the FCP results, they are likely to be in-line with your symptoms. I remember when I came off a high dose of prednisone, my FCP result was great. Everything looked perfect, then literally a week to two later, with the addition of entyvio, things started progressing to a full-blown flare up. I know they say it's good to start these meds when things are managed, and so I did, but it didn't make a difference for me. I feel like it's going to work, or it's not. Of course, if you're at 90%, it's likely to get you feeling better faster, but if you're at 90% (like I was), and it doesn't work for you, they will progress equally quickly. According to my GI, the statistics for LDN and UC are not at all hopeful, but I've seen people here with great success. The imuran alone could give you a long remission. Hopefully everything you're doing is the key.

Thanks Notsosickly. I am holding my ground and really focusing on a more natural approach in combination with drugs with the least amount of side effects. I'm finally back to weaning off prednisone. I'm at 15 mg now and have been for two weeks. Monday I drop to 10 mg for two more weeks and then drop to 5 for two weeks. Fingers crossed through diet and lifestyle changes, my cooon Colon continues to heal and my crp and fcp levels stay normal.

Thank you Charlie! Before I do another aggressive treatment plan, I'm going to see if my numbers stay down doing it my way after coming off the prednisone.