New to forum with a question.

[Jennifer 02]

Hello. I was diagnosed in 2002 with "mild" Crohn's. It has been maintained with Pentasa for the last 10 years with very little symptoms. I had a "routine" colonoscopy this week and it showed "severe ulcers" throughout my colon. My Gastro Dr. is recommending I start on either Humira or Remicade.

Of course I am scared about the side effects I have read about. I am wondering which one would be better to start out on and is there a middle ground drug between Pentasa and either Humira or Remicade? I feel as though I am making a huge jump in drugs, but want to do what is best for me.

Need some advice, please

Jennifer

Diagnosed in 02
maintained on Pentasa/until now

 

[Astra]

Hiya Jennifer
and welcome

Pentasa has done it's job now, if the disease has progressed maybe it is time to bring on the big guns!
Pentasa is like an aspirin, an anti inflammatory, great if you're mild, but won't work if it's severe.
Have a read thro our sections in the Humira Club & the Remicade Club, loads of success stories in there for you.
Glad you found us, enjoy the forum
lotsa luv
Joan xxx

 

[outlier]

I've been on humira for over a year every week. I've had few side effects: when i moved up my dose to every week i had bad headaches for a while, i also got shingles because my immune system was so low.

i know the side effects sound scary but they are very unlikely. the hardest part of it was getting over the shot concept.

 

[Samboi]

Hi Jennifer.
I'm in the same boat as you. I've used Salofalk for about ten years and it's worked ok. Massive flare at the end of last year though - which led to an ileostomy - and my GI has advised I have to move on to Humira. We tried Infliximab - I had convulsions during the second dose. I tried Imuran ten years ago and it put me in hospital.
So Humira seems to be the next option. I'm very worried about the long term effects as well as the side effects. It seems like quite a leap in treatment.
I'll be keen to follow how it works for you.

 

[rygon]

Ive been on Infliximab since august and have found it great. I reckon the way of thinking now is that you hit it head on with the strongest drugs, get into remission and work from there. Ive also tried azathioprine which is in between (but also with side effects) and it helped for a while although my crohns got worse and it made no difference at all.

You have to weigh up pros and cons. Is your current lifestyle good enough you dont need to try anything stronger compared to problems you may get later in life.

Personally I would rather tackle my illness now and have a better life at this moment. I may get side effects from the drug later in life, but equally I may not, i'll deal with that as it comes.

You also have to take into account how much of a risk it is. Say theres a four fold in the increase of cancer. If the risk is only 0.01%, that will bring it to 0.04%, still very low (these figures were just made up btw)

 

[Angrybird]

Hello Jennifer and welcome Sorry to hear that after all that time you have now been found to have active disease. Definetly have a look through the treatments forums so you can have a good look at these two meds and write down any questions that you want to then take back to your doc before making a final decision. When is your next appt with them?

 

[Jennifer 02]

Thank you for your help and responses! I really appreciate all of you taking the time to write and help me sort through this. I have to go and get my TB test done today, then next Thursday I have an appointment with my GI to discuss which treatment and the results of the colonoscopy further.

I guess I'm leaning toward Humira since I can get the shots at home. My husband could give them to me if I can't bring myself to do it.

Yes, rygon, I agree from just reading posts that maybe the way of thinking is you hit it head on (is that the "step up" approach I have read from other posts)? If that what is supposed to be best, then that is what I want. It just seems like such a big jump from pills to shots! Ugh!

Does anyone know if Humira or Remicade is supposed to be better for specifically ulcers in the colon? I certainly don't want my disease to progress any further.

Thank you!

 

[Johnnysmom]

I would think 6mp would be the drug in between Pentasa and Remicade or Humira. Has your Dr. mentioned that?

 

[Jennifer 02]

Hello, Johnny's Mom!

I have to say I saw a few of your other posts earlier and I LOVE that you put prayer as one of your medications I hope your boy is doing well. I have two boys (ages 6 & 8). I am so frightened of them getting this disease. I will praying for Johnny in my long list

No, my DR has not recommend 6MP... I will ask about it when I go back this Thursday.

Thank you for the suggestion!