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Medications

Dee22
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I've had Crohn's for over seven years and it recently spread through my colon. I have been taking Humira for about four years and my disease isn't responding to it anymore. I was hospitalized for iv antibiotics and steroids. I came home yesterday and they put me on oral prednisone and augmentin. I'm sure most of you know the side effects of prednisone. My doctor gave me ativan to help with my anxiety. Has anyone else had problems dealing with trying to use medication to treat the side effects of other medication. I've had a hard time lately with taking so many different meds. I'd appreciate some input thanks!

Explore topics in this discussion:

Anxiety Surgery Questran Pain Prednisone Ativan Stem cell transplant

5 replies

sooty

hi there,
i was on steroids for years, have had crohns for 35 years now, still ongoing but i won't take steriods now. I haven't used them for around 20 years as the side effects were too bad for me. i came off them and realized that around 50% of my health problems vanished. i also realized they did nothing for my crohns disease. I have a really bland diet but am still suffering with strictures etc. am going to try humira soon, other than that i've never had any relief from any medicines. Questran can control the number of loo visits well enough but it's slightly uncomfortable to have in the intestine i think.

I really sympathise with you over your suffering but its great to know others are also stuck at home with this disease and it's also nice to share experiences. i hope you have remission soon,
best wishes
sooty

Dee22

Thank you I have never used one of these sights before and I hardly talk to anyone about my disease. I've been having a very hard time dealing with it lately and its been really nice to know that you guys are going through the same thing and that you have had some good advice. I hope the humira works for you I have been on it for years now and it helped for a long time without many side effects. Unfortunately it just isn't controlling my disease anymore and it keeps spreading. I have had to have surgery for abscesses in the last month and they haven't healed since. Its been pretty rough. Thanks again for the input :)

DungBeetle

Hey..tell me more about not holding on Humira.

My guy has been on it over a year now and starting to have bleeds about every three weeks (3 daze of 40mg predisone and the "whatever" heals over).

I wondered about dosing it more often (now every 2 wks), alaz, the funding source won't allow for different dosing. Have you tried different dosing?

I have been promised new meds that are waiting pediatric approval....and They Rx'd a steriod that has little to no side effect if the pill is kept whole but my guy is 100% Gtube fed so we couldn't do that idea (but I will get brand names of these meds They speak of).

My team doesn't scope...only for Dx and they they blindly treat which seems odd. My guy was dx at 7 and now is 17 and was sent to psych for crying (talk about side effects)...
...he can't talk but the crying seemed pain from crohn's. Took off all psych meds (wild west over there) and the crying went away with Humira coming onboard.

He has been on Ped Vivonex since 3 years old and now we are trying a formula change to try and get some weight on my 75 lb.boy...

so...I would love to hear what is the next course if you don't get better with humira...and it doesn't sound like you are better...they don't heal? Yikes, they need to heal.

Dee22

I'm so sorry I feel for someone so young having to deal with all this. I have always taken Humira every week and the last year or so my disease is progressing despite the Humira. I'm looking into stem cell transplant reasearch prgram right now, but they have to get my abscesses healed and my infections cleared up before they can start that. I hope that you can get a scope for your lil guy soon I think it would give them a much better idea of where his disease is at and how to treat him better. I know its really hard to go against doctors sometimes, but it can be the difference between getting better and not sometimes. Keep pushing on and best of luck to you guys!!!

DungBeetle

I wonder if dosing every week might get my guy better results?

It is a fine line I walk with two boys on Gtubes and medically fragile...I have the hardest time with the "learner Mds" cause they like to treat "paper" and only the paper from the last year.

yikes the time..

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