Wrote once before about my son who has severe UC. It had been 1 1/2 years since on set of UC. He has been on Apriso, Imuran, suppositories, prednisone for almost this entire time, each time working his way down on predinose, getting below 15 and UC getting worse each try. Starting back on 40 again. Now they have put him on Humira, 40 mg injector pens. Did the initial starter pack then every other week. Started to feel better, then UC started getting worse again. Now he is on shots weekly,plus Apriso and Imuran. Has started feeling better the last week. He also went to the Mayo Clinic in Minnesota. Nothing different other than keep taking the medicine.
How many other UCer’s are taking Humira along with Imuran and Apriso?
Currently not bleeding but colon is not happy towards the end of each week before next shot is given.
My Son’s Current Colitis:
Most worried about taking Humira along with Imuran and Apriso and wondering if other patients have taken all 3 of these medications at the same time, and if so how did it help the patient. Has any one heard about pig worms being used in Europe for helping UC patients and has any one tried them in the US? Heard they are helping the patients in the trials being done. Having trouble getting insurance approval again for the next 6 months, because Humira is not listed as a drug for Ulcerative Colitis only Crohn’s disease. How long have patients taken Humira, and is it a life long drug, once you start, can you ever stop taking it without the disease coming back? I guess they need your life history to approve Humira. Have spent alot of time trying to get prior approval again.
We are constantly researching UC and trying to find other things to try and put it in remission.
We have been told by all 3 of our doctors,
that diet doesn’t play a part in the disease ,
but when in a flare to go easy on certain food items.
How many people have been helped by the SCD
diet? My son says his diet doesn’t have anything to do with his disease. If Humira doesn’t keep working, will probably have to go back to the Mayo Clinic, hopefully new things keep being found to try and put this awful disease in remission. Patients need some hope for remission, or life wouldn’t be too nice. I read all the letters to see if someone can come up with other things to try and discuss with physicians. Thanks to everyone who writes and hopefully someone will read this and try some different options, or at least talk to your physician about new alternatives.
Where we’d want to be in 1 year:
In remission and off some of this medicine or all of it.
Apriso worked some when first diagnosed, along with prednisone
, then stopped working, started taking Imuran and Apriso along with prednisone. Imuran made him feel bad. Stopped taking Imuran. Now on all 3 meds.
written by “Worried Parent”