Hi all,
Sorry I haven't been regular lately and welcome to the newbies! Sorry you need to be here. I think the last report was that my gyno was having me try hormones but not surprisingly they didn't help. I couldn't even say they made me feel better either. So she said to stop them. My GI said to go ahead and try the hormones but he really didn't think they would help and he was right. So he said to up my Imuran when I finished the estrogen. I just started last Fri on 125 mg of the Imuran ( azathioprine ) up from 100mg and I am also still on the Entocort. I will be weaning off the Entocort eventually. He wants me off the steroids. He says they really don't know how much steroid is systemic and he doesn't feel it is safe long term. He is comfortable with Imuran long term. It's been around for 40 years and has a good track record. Entocort is really new and geez it is so expensive. My last prescription fill was $517.00 for a month's supply! Imuran is less than $100. The Imuran was a nearly last resort med. He said next would be an IV med, No thank you. Nothing else helped. Diet didn't help. I am so glad that so many of you get results with diet! I certainly would prefer that!
Pat
Thought I'd check in and give an update
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I should have put this thread in the diet and med section, sorry.
I also meant to tell you that my GI talked to someone at Mayo Clinic about me and how difficult I was and he was told to do some more tests including an IgG and a test for a rare form of parasite. The parasite test was negative and he accidentally requested an IgA test so I had to have it redone (at his expense). Should find out the results of that one this week.
Pat
I also meant to tell you that my GI talked to someone at Mayo Clinic about me and how difficult I was and he was told to do some more tests including an IgG and a test for a rare form of parasite. The parasite test was negative and he accidentally requested an IgA test so I had to have it redone (at his expense). Should find out the results of that one this week.
Pat
It's so good to hear from you again Pat, though I wish you had better news. There's got to be an answer to your situation somewhere. I've wondered if you've ever tried to give up eggs to see if they could be the problem. I know that your Enterolab test was negative for eggs, but maybe you've become intolerant to them since the test. Knowing you, you've probably already tried giving them up, but I thought I'd mention it.
I know that you had been reading this year's postings on the old site, so you know that parasite testing is tricky and one test doesn't always find the parasite. I still keep my fingers crossed that you'll be able to overcome this disease someday.
Gloria
I know that you had been reading this year's postings on the old site, so you know that parasite testing is tricky and one test doesn't always find the parasite. I still keep my fingers crossed that you'll be able to overcome this disease someday.
Gloria
You never know what you can do until you have to do it.
Thanks, Gloria.
Yes, I tried giving up eggs.
I also should mention that after I reach a therapeutic dose of the Imuran ( should be where I am now but have to be on it for 8 weeks before testing) my GI intends to send me to a Dr. Schiller in Dallas. He supposedly specializes in hard to treat D cases.
Pat
Yes, I tried giving up eggs.
I also should mention that after I reach a therapeutic dose of the Imuran ( should be where I am now but have to be on it for 8 weeks before testing) my GI intends to send me to a Dr. Schiller in Dallas. He supposedly specializes in hard to treat D cases.
Pat