Dr. wants to start me on Remicade or Humira

[Astro27]

I've been diagnosed with Crohn's disease for 12 years, (since I was 19), and have for the most part managed well through my flares. I used to be on Pentasa for the longest time, but my doctor changed me to Asacol HD which I've been on for almost a constant cycle. I have periodically been on various other drugs, such as 6-MP, Prednisone, and some others, but usually only for a few months until my flare subsides.

I've had a flare for a little over a year now and my doctor thinks I should try some stronger medication. I'm currently on Asacol, 6-MP, and some supplements. I was on Prednisone a while back and because I'm still having the flare my doc wants to try something else. I just recently had a colonoscopy and haven't yet talken to him yet since the procedure, but he wants to start one of these drugs soon. I've already gotten a TB test that came back negative, but I've been a bit hesitant to contact my doctor because I'm not exactly sure what either of these new drugs will do to me.

I have to admit that I'm not a very good patient. I don't eat the best of foods, rarely exercise, and for the most part of my diagnosis flares have usually just been temporary inconveniences that usually go away once I hit the steroids. Now that I'm getting older I want to be more pro-active with this disease though because I know what can happen if I don't take care of myself.

I wanted to know what I should be concerned with, and if one carries more or less risk than the other. Looking up all of the possible side effects on WebMD is scary...so I'd rather hear some personal stories and advice

 

[Honey]

Hi there,
I do understand your concerns. I was on Budesonide steroids for a long time until I agreed to Infliximab Infusions, every 8 weeks. I am doing well on this treatment, only offered as a last resort when all else fails! I had some bad side effects of other meds which did not reduce the inflammation.
Talk to your Doctor about your concerns and ask questions. You are monitored closely ,with frequent blood tests to check liver and kidney function, etc
I do not like being on this treatment but it is keeping me well, symptom free. No pain!
You have to balance up your options. Watch your diet too and leave out foods that aggravate it. For me, that is rich creamy or cheesy saucies and nuts. Eat in small amounts too and drink plenty so you do not become dehydrated as this makes you sick.
I will not bombard you with anymore info. Let me know how you are getting on.
:welcome:anda:

 

[David]

Welcome to the community.

Based upon everything you've said, I'd suggest trying Remicade. It's excellent for bad patients.

 

[Astro27]

Just an update....I started Humira in January and although my start was a little bumpy, (lost power to fridge, had to get a replacement pen but the company didn't want to give one, then finally got it but 2 weeks later), but now I seem to be doing ok.

I still don't feel like I'm completely out of the woods though because I'm still having constant loud noises from my stomach. I've searched around and oddly this seems to be common for crohn's patients, but I have never had this until after my last colonoscopy. Ever since then my stomach makes extremely loud noises, usually shortly after I've eaten. I know it's loud because during Christmas I was at my dad's house with family and everyone kept laughing when my stomach would make a loud noise. I don't really care about the noises around family, but when I'm at work, or god forbid on a date....it's extremely embarrassing!

Shouldn't the noises go away as this flare subsides? I'm still not sure why they started in the first place. In the past I've had some terrible flares, and have also had very long periods without any problems, but never in any of those times have I had these weird noises emanating from my gut. To make matters worse I've been gaining weight, (hopeful sign that the flare is subsiding), but now my stomach seems to be acting as a bass booster for these noises lol. Ugh...laughs aside I really wish it would go away!

 

[Honey]

Hi there,
Do not worry about the gut noises as that is normal when you have digestive problems. The main thing is, are you pain free and able to eat well? How are you feeling on the whole? I hope your treatment is working well for you . Best wishes.

 

[Astro27]

I'm eating a bit too well as I've gained a lot of weight even after comming off of prednisone. Weight gain is usually a positive sign for me, so I'm not sure why my stomach keeps making these noises. They always come from the same location on my stomach, for others with stomach sounds is that typical? I haven't had any pain at all and generally feel better now that I'm on Humira.

My doc said I was pretty constricted in my last colonoscopy so my hope is that the Humira should help with that as I continue, and thus hopefully eliminate the noises, but I'm really just guessing. I'm sure he'll want to setup another one of those fun procedures soon to get a better picture of my insides.

 

[Honey]

Hi there,
glad to hear you are feeling o.k. otherwise. Remember some foods or the amount you eat can cause flatulance. You will know yourself what to avoid. Eat small meals often. Best wishes.