Recently diagnosed, need some advice regarding Remicade / Humira

[UnkoMan]

Hey guys, found out recently that I have some form of colitis. The doctor wasn't able to tell if it was CD or UC but hey, at least it's something.

Eventually found out about this forum too which has been a godsend in terms of information. :smile:

I noticed blood in my stool and thought originally that I had a case of hemorroids, after trying out some over the counter medication that didn't work (duh) I went to a doctor. Long story short, ended up with a camera up my ass and was given Pred 8 x 5 mg / day (with a program to reduce the dosage) and Asacol.

I've just now taken my last Pred (still taking Asacol), I'm symptom free but it would be naive to believe that this is going to last. I could use some advice on the next step.

My symptoms fortunately seem very mild in comparison to what I've read around here. Blood in stool, loose stool (not watery diarrhea but no logs either) and increase in BM. (Up from 1-2 to 4-6 depending on diet.)
No pain, no nausea, can still eat anything apparently etc.

The thing is, I spoke to my doctor, and I asked him, what's the next step when / if the symptoms come back, and he said Remicade / Humira. Now after reading about these drugs, they seem pretty damn strong with plenty of non-wanted effects.

Now I understand completely if someone is in great pain, or has to run to the toilet 20 times a day wants to take this type of medication, but in my case, I question if it is worth it?

1. Are there other options to a person like me with more mild symptoms? I'm still taking Asacol, hopefully it will keep my guts in check but if it doesn't, is Remicade / Humira really my only option? I'm also looking into changing my diet.

2. This is a question more out of curiosity, but what happens if you don't treat it with medication? Does the disease progressively get worse? Truth is, the symptoms that I had weren't really affecting my life. Pred affected me way more than the symptoms ever did.

Thanks for reading, sorry for the long post. I would truly appreciate any insight you might have.

Sincerely, UnkoMan.

 

[lgpcarter]

1. Are there other options to a person like me with more mild symptoms? I'm still taking Asacol, hopefully it will keep my guts in check but if it doesn't, is Remicade / Humira really my only option? I'm also looking into changing my diet.

Yes, there are other options. This brochure from Crohn's and Colitis Canada will give you the basics of the different classes of medications and what they do. If Asacol is enough, that is great! If not, you may need to add something else or move on to another type of medication.

 

[Clash]

Welcome to the forum.

1. A lack of symptoms doesn't always correlate with no active disease present. My son has been asymptomatic for a year and half to 2 years but required surgery last August.

Also, meds can vary between CD and UC just a bit. A Cochrane Review was done on 5ASAs like Asacol and numerous studies showed that although effective with UC it showed no more efficacy than placebo with CD. But it can work for some with CD.

2. The meds are like a pyramid with 5ASA's at the bottom, next level immunosuppressive meds like Imuran, 6mp and methotrexate. Then biologics at the top like humira and remicade.

No matter the treatment choice the imperative measure is to make sure you monitor the disease activity with regular blood work, fecal calprotectin stool test, and imaging and scopes when called for.

 

[Clash]

Also the mid tier meds like Imuran and methotrexate also come with some rare side effects similar to the biologics.

 

[shamrock15]

I would say be prepared to experiment a little. I am a little partial because only a combination of remicade/imuran ever really worked for me. It certainly has prevented things from progressing. At the time I started, I was on a reducing frequency for surgery - first 7 years since diagnosis, then 5, then 3, then 2. It is now 7 years and counting on remicade without a hospitalization due to crohn's (kidney stones related to absorption issues notwithstanding).

Some of the meds can take a long time to become effective. Talk often with your specialist as you settle in, and feel free to visit here often for advice. While each case is different, there are a lot of similarities in the approaches that crohnies here use.

 

[lgpcarter]

2. This is a question more out of curiosity, but what happens if you don't treat it with medication? Does the disease progressively get worse? Truth is, the symptoms that I had weren't really affecting my life. Pred affected me way more than the symptoms ever did.

There are a few things to consider here:

-long term effects of inflammation on your body (short answer: bad news!)

complications:
-intestinal scarring - leading to stricturing, malabsorption, obstructions
-inflammation in intestine leading to obstructions, which can lead to bowel perforations
-weight loss, malnutrition

In terms of disease progression - would leaving it untreated cause it to spread? I am not sure. It would definitely, if you got into a flare, make any active areas of inflammation worse.

I meant to add in my previous reply to question #1 that they are now finding a better response treating patients with the anti-TNFs (Remicade, Humira, Simponi) as the first option rather than the last one. I do understand the hesitation given the side effects of them, though, and in light of your relatively mild symptoms thus far.

 

[araceli]

My Daughter is mostly asymptomatic. 3 trips to bathroom at most, no pain and never bleeds. Colonoscopy showed a lot of damage at her ileum when we thought she was in remission and we moved to remicade.

 

[UnkoMan]

Thanks a lot guys! This will help me tons.

I'll talk with my doctor in greater detail and see what my options are. Thankfully I live in a country where medication costs are not something to worry about.