I'm allergic to everything! Alternatives?

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neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 5/20/2008 1:59 PM (GMT -6)   
I am 20 years old and was diagnosed with ulcerative colitis 4 years ago. i have tried numerous medications, and none seem to work for me. I first was on asacol, which I had an allergic reaction to. Budesonide didnt work, and 6mp sent me to the hospital with pancreatitus for 4 days! The doctors keep giving me prednisone (yuck!) and every time i take it again, I have to take a higher dosage than the previous time. I am having flares every 3-5 months and I cant keep doing this prednisone deal. I'm currently taking 30mg prednisone 1x day, aloe and fish oil 3x day. Is any one else allergic to these meds? What works for you? I'm also interested to know what people who have had surgery have to say.

thanks!

Got2Believe
Regular Member


Date Joined Feb 2007
Total Posts : 436
   Posted 5/20/2008 2:04 PM (GMT -6)   
Do you watch what you eat? The mother of my child has the most food allergies ever.
I would say if modern medicine doesn't work to well the first thing you should do is try a change in diet. Good luck in finding what works best for you.
                                                                                         
28/M/TX single parent of gorgeous 2.5yo girl (revised 5/8/08)
Severe Colitis (pancolitis) since January 9, 2005
currently:  6th week flaring;improving; 2bm/day; very little blood
RX/day:  Currently 10mg of prednisone per day. Lost job and insurance 10/2007 and stopped taking asacol and Imuran cold turkey
OTC: seldom use VSL#3, vitamins & other natural treatments
Diet: SCD helps tremendously, but am not strictly on it.
Other: food combos, enzymes, good posture, chewing more, etc.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/20/2008 2:11 PM (GMT -6)   
Surgery was the best decision I ever made and based on your inability to handle any of the maintenance meds it might be in your future so it's good to start researching your options. Prednisone should not be used as a maintenance med so I presume you are talking with your GI to find ways to get off of that drug ASAP. Have you tried Remicade or Humira? With your history I am not sure if they would be options.

Surgery and recovery were difficult but I was back to work within 3 weeks and dealing with recovery in good health made it easier. I have never regretted my decision.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/20/2008 6:33 PM (GMT -6)   
neondream - you haven't mentioned drugs like Infleximab, Humira, Abatacept or Golimumab in your list of drugs tried... Have you considered trying one of these?

Due to your bad response to 6-MP, I'd probably suggest Humira. Also consider entering drug trials. I am currently part of the phase 3 Golimumab trial and so far, am responding amazingly to this drug.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.


neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 5/20/2008 10:35 PM (GMT -6)   
Thanks for the info everyone!

I do monitor my diet. Definately no raw veggies or greasy foods, those are the worst. I tried wheat and gluten free for a while with no luck. I do have food allergies as well that result in non-GI reactions. (banana, cucumber, melon, avacado, raw nuts)

My GI hadn't even suggested any those medications. Are any sulfa based? I know I am allergic to those. The only option I have been offered after the failed attempts, was prednisone. I just cant accept it after all the torture it has done to the rest of my body. I will have to do some research on those medicines!

Could anyone tell me more about the SCD diet?

Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 5/21/2008 2:19 AM (GMT -6)   
neondream - Hey there again. First, here's some information on the SCD diet and this is the SCD website with recipies etc. At least some reading material to get you started.

Ok, I am going to suggest VERY strongly that you get another GI... One that doesn't live in the prehistoric period.

Infleximab, Humira, Abatacept and Golimumab are all infusion drugs. They are proteins or fragments of proteins, all of which in their own way block another protein called Tissue Necrosis Factor -Alpha, or TNF-A for short. This is the protein that tells cells to kill themselves - ie. inflammation. Totally new-age drug for UC, often the miracle drug for many of us.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 1x BIOCeuticals UltraBiotic 45 + 1x SB FlorActiv twice a day.

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