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I have had UC my whole life, but never knew it.  I was diagnosed when I was 40, three and a half years ago. I did well with a couple flares on Lialda, Canasa, Rectal Mesalamine.

Then I had the worst flare ever over the past couple of months.  Only Prednisone calmed me down, but as we weaned I had some mild symptoms and my doc says its time for Remicaid.  I was a bit shocked, and find it hard to believe I need this. She has me on 30mg Pred daily while I decide what I want to do.  I feel pretty great except for mild symptoms in the morning. 

I confess I'm scared of Remicaid and just didn't know I needed this.  I also have had the most stressful year of my life which I believe brought this on.  Would love some advice.

 Reply posted for whymoore.

I should have noted the bone marrow test came back ok, I do not have lymphoma (thank God), but I do have to continue having my blood checked every three months to monitor my white blood cells.

I was on Remicade for just over 3 years, but had to stop using it due to side effects I had. While I was on Remicade it controlled my Crohn's very well, but I had several weird infections, ie folliculitus and pleurisy, several gut infections, and seemed like I practically lived on antibiotics. I also tested positive for lymphoma and had to have a bone biopsy (serious ouch), final issue was I started having some neurological side effects, severe headaches, memory loss and could not focus, that's when I had to stop taking it. My doctor says this is not the norm for most, and they did test me beforehand and said I was a good candidate for the drug, idk, it was pretty bad for me. Although now I'm off it and have not started any other drugs cause I'm a little gun shy at this point. I am taking VSL 3d, but sadly am back to almost constant flare ups. I really don't know what my next step will be, just trying to live with it for now as best as I can.

 Reply posted for colitis21.

Hasn't your doctor discussed 6MP or Imuran?  Usually those are intermediates before going to biologics like Humira, Remicade, Enbrel, etc.  I would also expect he went over the choices between those three as well.  I was under the impression Humira and Enbrel were considered preferred because of the high Remicade costs.

 Reply posted for colitis21.

I was diagnosed with crohns in 1988.  At that time they had very few treatments for ibd.  Prednisone being the  drug of choice to control flare ups of symptoms.  I was unable to cope with the side effects of the prednisone.  I had  3 bowel resections within a 5 year span before I began the remicade treatments 12 years ago.  I had the same fears you have of taking a drug for the rest of my life.  Remicade has been a miracle drug for me.  I have had no symptoms of Crohn's disease and my last colonoscopy showed no sign of inflammation.  Some people do experience side effects from the drug and not everyone has complete relief of symptoms.  I would suggest evaluating your symptoms and how they impact your life and weigh that  against tring remicade.  If you don't find that remicade works for you, discontinue the treatments.  The treatments are very costly.  Good insurance is a must.  Best of luck in finding an answer that works for you.

 Reply posted for lizzies mom.

Hello I share the same fear about these biologic drugs.  I have had UC for ten years.  Over that time I have had three major flares that have required visits to the ER.  The last 2 flares were within this last year.  I have used prednisone to stop these flares.  I have tried the following drugs which did not improve my condition Sulfasalazine, Mesalamine, and azathioprine.  I've currently been off of prednisone for two weeks.  I'm currently taking VSL#3, Cuccurmin, and Fish Oil, and my bowel functions are pretty normal.  I had a colonoscopy in Feb that showed mild to moderate left-sided UC.  My GI doctor is recommending Remicade or Humira as the next step in treatment.  These drugs seem extreme for the state of my condition.  Does anyone have an opinion on the use of these drugs?

 Reply posted for colitis21.

Wow, your story is very familiar to mine.  I hear your reluctance w/Remi; I've upped my meds to methotrexate (pills / not injectable) and was fearful of beginning.  Stress definitely sends me off the deep end.  Can you buy yourself a bit more time on a lower tier med while tapering the pred ,modifying diet (low fiber / low residue) and try reducing the stress level? 
I'd leave no stone unturned prior to beginning the big ones. 

Good luck to you