Introducing myself...

[stevenb1291]

Good morning! So I just joined the forum yesterday in hopes of learning from the experiences of people who currently treat their Crohn's with medication.

I was diagnosed with Crohn's approximately 3 years ago after another 3 years of ignoring my abdominal pain. I received my diagnosis because I wound up in the ER with severe abdominal pain.

I have mild to moderate Crohn's with a stricture of the terminal ileum and a fistula that "just happens" to bypass the stricture. I have flare ups probably 2-3 times a year and for the most part have "managed" (or so I thought) my disease through diet. I am extremely fearful of putting powerful immunosuppressants in my body and thus was trying to manage the disease via diet.

That changed this past Sunday when I had a stroke and wound up in the hospital for 3 days. Thankfully, I do not have any lasting neurological deficits nor do I have a problem with blood clots. I was floored after consulting with the neurologists that the most likely cause of the stroke was my untreated Crohn's. I am at a point now where I can no longer leave my Crohn's untreated.

I am looking for advice on two specific medications. My gastroenterologist wants me to take both Remicade and azapriothine concurrently. Frankly, I am scared to take either one of these and it's even more scary to imagine both at the same time.

I am looking for thoughts and/or experiences with these medications. I have heard the horror stories of the potential side effects. Any and all advice is extremely appreciated.

Thanks in advance for your help!

Steven

 

[crazycanuck]

Hey there welcome to the forums. I know the side effects can be scary but they really changed my life. I started remicade about 8 weeks ago now. Apparently some study said 60% of patients on that combo go into remission which is even higher than pred! Anyway good luck and see you around the forums.

 

[Astra]

This is true!
In The Lancet, Medical paper, it reported about the 'step up' approach, which is steroids first to control inflammation then an immuno suppressant to prepare the body for a 3rd med, an antibody to curb the inflammation response at the root of the disease.
Alternatively, the 'step down' approach is using an immuno suppressant with an antibody to blitz inflammation from the off! Steroids are not needed with this approach.
And 60% were symptom free with the 'step down' as opposed to 36% with the 'step up'

Check out our Remicade Club Thread, loads of info on there for you
Big welcome Steven!
xxx

 

[crazycanuck]

Thank you Joan I couldnt remember specifics so spit out what little did come to me haha.

 

[namv]

i'm still fresh but just wanted to throw in a some support i hope you feel better!

 

[CDDad]

Hey Steven,
Taking both is a pretty heavy duty approach. Your doc must think you have severe disease. I tried azapriothine years ago and it did not agree with me. So, personally I don't like that one. It just made me feel worse and worse as the doc kept increasing the dose. I am on Humira now. Anyway, don't end up like me, take your meds and try to avoid years of chronic inflamation. That leads to bad things.

 

[stevenb1291]

Thanks for all the advice so far everyone-it is highly appreciated!

CDDad-I am seeing my GE on 01/04/11. The last 2 small bowel series I had have shown only the stricture in the terminal ileum and the fistula near it. Aside from that the physical manifestation of the disease hasn't changed. I haven't had a colonoscopy in some time as he cannot push the camera past the stricture. In terms of flare ups I don't have many of them although I am always experiencing some sort of abdominal pain. In the short time I have been lurking on these boards it seems that my disease is relatively minor compared to what some others here are going, or have gone, through. I guess I am trying to explain the rationalization I was using to stay off of meds. I am now coming to grips with the reality of going on treatment. It's a big step for me as I have never been one to put a lot of medicines into my body. Alas, I will heed the advice and now go on treatment.

I very much appreciate the advice and good will I have received in the short time I have been around these boards.

Thanks so much!

 

[crazycanuck]

Hey there I agree with CDDad in that make sure you do something to help youself. I spent 2 years on asacol which according to my new doc was basically like taking nothing for most areas of my disease. I really didnt think I was flaring all that often either. Im paying for that now. I did have very minor crohns and am now well into moderate and I really hope the same doesnt happen for you.

 

[stevenb1291]

crazycanuck-Thanks! I very much appreciate your thoughts.

I've learned so much here in two days. I am for sure going to go on treatment as I never want to experience another stroke. I often have mucus in my stool which I learned indicates active inflammation. It's funny though because, aside from major flare ups, my abdominal pain is relatively minor/low grade and thus tolerable. I see now that tolerable/low grade pain should not be a justification for foregoing treatment. I regret my stubborn nature that led to me not starting treatment sooner.

Thanks so much!

Steven

 

[CDDad]

I don't mean to be picky, but you mentioned a stricture in the terminal ileum as the reason for not doing a colonoscopy. A stricture there would be right at the very end of a colonoscopy. Did you mean a stricture somewhere else in the colon?

And good for you taking control of your desease. I think many of us do the stubborn denial thing too long.

 

[Sandy]

Hi Steven,
I'm on azathioprine, and haven't ever felt any side effects. I've never tried Remicade, and I agree it sounds a bit scary.

I am on budesonide, which I now realize makes me depressed. So I'm trying (yet again) to get off it. Steroids are difficult to get off of.

Good luck with your treatment. Make sure the stricture and fistula are monitored if you go on Remicade. I've heard that Remicade can heal inflammation so fast (a good thing) as to cause a narrowing (not so good!).

Best wishes,
Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

 

[stevenb1291]

CDDad-Good morning. Sorry, I was a bit unclear. I did have a colonoscopy. He was able to inspect the colon up to the stricture but was unable to advance it past the stricture. My appointment card indicates I am due for both a small bowel series and a colonoscopy. My last small bowel series showed no change from the one the year before. I will probably do both exams as I want to be thorough and I now understand, through all of you in the forum, that long term chronic inflammation is not something I should be trying to live with or ignore. I have been ignorant and stubborn for too long in this regard. Thanks again for your advice; I really appreciate it!

Sandy-Thanks for the info on azathioprine. My GI is going off the recent studies in the literature which I guess show that concurrent therapy is effective in promoting remission in Crohn's. I'll keep you in my thoughts and prayers regarding you getting off of budesonide.

Thanks again for helping to open my eyes. This forum has been a Godsend.

Regards,

Steven

 

[mario]

Hi Steven
Sorry to hear about your stroke. That's a new one to me!
2 years ago i had emergency surgery and ended up taking 27 tablets a day.
It was a long road back to health but i have been in remission ever since (yay)
I now take pentasa, loperomide and adcal and had a routine appt with my gastrologist last month.
He was pleased with my progress and told me to make an appt to see him again in a years time. As i left i asked if he thought i could reduce my pentasa intake.
His reply "Yes ok. But make that appt for next week will you"
Nuff said!!

 

[Sandy]

Hi Steven,

Thanks for the good wishes! I'm came down a bit last week on budesonide, and am still doing OK, so I think you helped! In a couple of weeks I'll try to taper again.

I think 2 or more drugs seem to work better than just one in many diseases. I'm on two high blood pressure drugs, for example. I guess if you fight a disease in two or more different ways, the two methods reinforce each other.

Hope next year is much better than this one!
Sandy

 

[Brian'sMom]

Steven,
I'm new here too, and have been struggling with giving my son first Azathioprine and now Remicade. Many have helped me thru this. Today I found an article on the CCFA website that was exactly what I was looking for. Its called "Balancing the Risks and Benefits of Treatment for Inflammatory Bowel Disease". Dr Siegel.

www.ccfa.org/webcasts/Risk and BenefitsTranscript.pdf

It was easy to read and understand. The question/answer section starts on page 14, so its not as long as it looks! I'm going to post the link in the treatment section too.

 

[stevenb1291]

Thanks Brian'sMom!

I am working my way through that article.

I am seeing my GI today. We are going to discuss treatment. I had an episode last week of extreme abdo pain last week and wound up having an emergency appointment with another GI in my regular GI's office as my GI was unavailable. He put me on metronidazole and ciprofloxacin and today I am going for an MRI on my abdo to check what's going on.

I spoke with the other GI at length regarding treatment and he explained to me that Remicade is not the only option as there is also Humira and Cimzia as alternatives. I asked about azapriothine and the extreme fatigue that people experience and he told me many of his patients have not experienced that but some have experienced hair loss.

I am eager to learn more about Humira and Cimzia as the GI told me they are injections that can be performed at home....

 

[acg101]

Hey Steven,

for over 3 years, I have been on both Remicade and azapriothine concurrently and had no problems.
Moreover, my GI insisted on the combination.

Good morning! So I just joined the forum yesterday in hopes of learning from the experiences of people who currently treat their Crohn's with medication.

I was diagnosed with Crohn's approximately 3 years ago after another 3 years of ignoring my abdominal pain. I received my diagnosis because I wound up in the ER with severe abdominal pain.

I have mild to moderate Crohn's with a stricture of the terminal ileum and a fistula that "just happens" to bypass the stricture. I have flare ups probably 2-3 times a year and for the most part have "managed" (or so I thought) my disease through diet. I am extremely fearful of putting powerful immunosuppressants in my body and thus was trying to manage the disease via diet.

That changed this past Sunday when I had a stroke and wound up in the hospital for 3 days. Thankfully, I do not have any lasting neurological deficits nor do I have a problem with blood clots. I was floored after consulting with the neurologists that the most likely cause of the stroke was my untreated Crohn's. I am at a point now where I can no longer leave my Crohn's untreated.

I am looking for advice on two specific medications. My gastroenterologist wants me to take both Remicade and azapriothine concurrently. Frankly, I am scared to take either one of these and it's even more scary to imagine both at the same time.

I am looking for thoughts and/or experiences with these medications. I have heard the horror stories of the potential side effects. Any and all advice is extremely appreciated.

Thanks in advance for your help!

Steven

 

[MADiMarc]

I was on Remi for 3 years and it was wonderful! I have never had such pain free times before and have not since. I developed antibodies that would no longer allow it to work for me.
:goodluck:
Michele

 

[stevenb1291]

Thanks Dan and Michele!

We decided on Humira, pending insurance approval, and aza. My GI seems to think that my insurance may mandate that I try Remicade first as its cheaper(???).

I can't start treatment, however, until I finish my current course of Flagyl/Cipro for a suspected abscess. After that I have a course of antibiotics to take for H. pylori and then I can start my Crohn's treatment. My GI doesn't want me to be on all kinds of drugs in case I react to any of the treatments. He wants to be able to tell which one if I have a reaction.

Thanks.

Steve

 

[Brian'sMom]

Michele,
Did you miss a dose of Remicade and then build up antibodies or did it just happen anyway?

 

[MADiMarc]

No I didn't miss any doses. I loved that stuff. My body seems to adjust to what ever meds they throw at me. Just lucky I guess!
Michele

 

[tmartenst]

I was on Remicade and Cipro from the start of my diagnosis (mid to severe) 10 years ago. I am EXTREMELY happy that the doc did not attempt steroids but it was pretty against the grain back then. I stopped taking Remicade for a few years because I started feeling well without it and also built up anti-bodies. I had surgery 2 years ago and have been on Humira ever since. Hard to tell how things are working because I had my funk removed with the surgery.

Point is, Remicade worked very well for me. Literally, I could feel like crap in the morning and get the infusion and be good as new in the afternoon and for quite a while afterward.

Thomas