I am an 18 year old female, and was diagnosed with originally just "Crohns" at the age of 11. Since then it has run my life, I have required prolonged hospital stays for every flare of the disease, and have had at least 1 most years.
To date I have been on every possible drug therapy for my disease, and have had little to no success, the following is my experience with individual drugs (chronologically)
diagnosed 2007
Oral Prednisone - I have terrible problems with absorption which were made clear early on.
Remicade - worked wonders for my Crohns, how ever about 7 months in I started experiencing head to toe pain blisters. This made Remicade unsustainable.
Humira - again, helped my Crohns, but about 5 months in, I experienced the same reaction as I did with Remicade - treatment with Humira was discontinued.
Methotrexate - Made me horrible nauseas, and original inadequate dosing caused a servre flare (IV Prenisone helped real things in) We tried an increased dose and this lead to another flare (IV Pred used again - 40-60mg)
Azathioprine - Takes a long time to take affect, I use IV then eventually oral prednisone to bridge the gap. This medication worked for over a year.
Unfortunately early last year I made the HORRIBLE decisions of stopping azathioprine and trying to manage my disease with exercise and healthy eating - foolish. It sent me into a horrible flare requiring a month hospital stay.
At the time there were no real other medications available and I no longer respond well to IV prednisone, so I decided to try and use Remicade to try and bridge the space of going back on azathioprine. I was unable to complete the loading dose due to the side effects (inner arm skin peeled off, and cause sever psoriasis like rash). This is when we discovered I have fistulizing disease.
That held for about 5 months out of hospital, before things fell apart again.
I spent this past December in hospital where me and my Gastroenterologist decided to use Stellera (a psoriasis medication) of label. It can take up to 20 weeks to start working, and when in a flair who has 20 weeks?
So I going back into hospital today or tomorrow, locking to bridge the time between now and Stellera possible taking effect, possibly with Dexamethosone. Crossing our fingers Vedolizumab will be made available in the near future.
If anybody has any other drug therapies they have tired, I am extremely interested in hearing about the experience. I want to exhaust all drug therapy options before considering surgery.
To date I have been on every possible drug therapy for my disease, and have had little to no success, the following is my experience with individual drugs (chronologically)
diagnosed 2007
Oral Prednisone - I have terrible problems with absorption which were made clear early on.
Remicade - worked wonders for my Crohns, how ever about 7 months in I started experiencing head to toe pain blisters. This made Remicade unsustainable.
Humira - again, helped my Crohns, but about 5 months in, I experienced the same reaction as I did with Remicade - treatment with Humira was discontinued.
Methotrexate - Made me horrible nauseas, and original inadequate dosing caused a servre flare (IV Prenisone helped real things in) We tried an increased dose and this lead to another flare (IV Pred used again - 40-60mg)
Azathioprine - Takes a long time to take affect, I use IV then eventually oral prednisone to bridge the gap. This medication worked for over a year.
Unfortunately early last year I made the HORRIBLE decisions of stopping azathioprine and trying to manage my disease with exercise and healthy eating - foolish. It sent me into a horrible flare requiring a month hospital stay.
At the time there were no real other medications available and I no longer respond well to IV prednisone, so I decided to try and use Remicade to try and bridge the space of going back on azathioprine. I was unable to complete the loading dose due to the side effects (inner arm skin peeled off, and cause sever psoriasis like rash). This is when we discovered I have fistulizing disease.
That held for about 5 months out of hospital, before things fell apart again.
I spent this past December in hospital where me and my Gastroenterologist decided to use Stellera (a psoriasis medication) of label. It can take up to 20 weeks to start working, and when in a flair who has 20 weeks?
So I going back into hospital today or tomorrow, locking to bridge the time between now and Stellera possible taking effect, possibly with Dexamethosone. Crossing our fingers Vedolizumab will be made available in the near future.
If anybody has any other drug therapies they have tired, I am extremely interested in hearing about the experience. I want to exhaust all drug therapy options before considering surgery.
