Disappointed 6 mp didn't work, venty update with concerns re treatment

[Ckoenig]

I am really disappointed 6mp didn't work and almost in denial. Thinking maybe the symptoms were from something else. I don't want to inject myself or take a biologic. I tried 6 mp twice but only for a couple of weeks and felt each time after 2-3 days on it like I had the flu and so exhausted I could barely move. I also got 3 migraine headaches during the duration, and have never even had one before, and now my eyes hurt. I have an eye dr appointment scheduled, a neurologist, a naturopath, and believe me I don't have time for any of these. I go to school full time, have 3 kids, adn work full time at Trader Joes. I know I need to be on something, but every single biologic scares the **** out of me. I went to the GI the other day and she seems to think Remicade is the miracle drug so I agreed to go on it, but after hearing from several real life friends about their experiences and reading up on here I do not feel that comfortable with it. My main reason is that I just began this crohn's journey. I am not bleeding, I have not lost too much weight, I do not have fistula's or abscesses. I have 6cm of diseased terminal ileum. I get gas and bloating and have more constipation and just weird tummy sounds and feelings than I do D. I feel like I am not severe enough to go to the most extreme biologic (remicade). My Dr. doesn't sound like any other pill options are out there besides 6mp for my particular presentation? Does this seem right? I hear a lot of other pill names out there. She feels asacol and lialda will do nothing for crohn's they are more for UC.
Everyone I know with crohn's has struggled with Humira, either had allergic reactions, can't tolerate the injections, or became sick constantly on it. I know I am different than everyone else, but it is worth listening to.
I am debating between trying the natural route, or getting on cimzia. I think if I try anything it will be cimzia for now, a friend of mine takes it. My Dr. didn't even mention it, she only said remicade or humira, when faced with the two I chose the remi because I didn't have to give myself painful injections. However my main reason for not doing remicade yet is I can never take it again if my crohn's becomes more severe. I do not consider it to be that severe yet. I get that the point is that it not become that way, but these medications cause so many other problems. I don't want to cause more problems than I already have, trying to medicate something I am so new to. I am really confused !!!
Thanks for listening

 

[SarahD]

6mp, humira and remicade definitely aren't the only treatments available and I can understand your hesitation to take them so early in the course of your Crohn's. It sounds like your symptoms are mild, but please bare in mind that the severity of symptoms doesn't always reflect the severity of the inflammation.

Some doctors go with a bottom up approach, starting with the mildest drugs and then working to stronger drugs if the milder ones either don't help or loose effectiveness. Other doctors go with the top down approach, starting with the strongest drugs to get the Crohn's under control more rapidly, with the aim that good early control of the disease will lead to longer term benefits.

5ASA's (e.g. Asacol or Pentasa) might be worth a try if you're inflammed only in the terminal ileum or colon, there's limited evidence to support their benefits in Crohn's but I know several people, myself included, who have found them to work. A friend of mine takes Asacol and along with watching what she eats (she did an elimination diet to work out her triggers) she's in complete remission. Since the evidence to support 5ASA's is so limited many doctors just go straight to 6mp and Azathioprine.

Does your reaction to 6mp rule you out from trying Azathioprine? There's also LDN, though it's not licenced for use in Crohns so not all drs will prescribe it, but if you search the forum you'll find several people who've had success on it.

Then there's diet. Some people have found success by going on a elemental diet followed by an elimination diet in order to work out which foods trigger symptoms and which don't. There's also the Paleo and SCD diets that work for some, but not all.

I wouldn't rule out trying Remicade, but as I said before I can understand why you're hesitant. I was faced with the same possibility not that long ago and did everything in my power to stay away from Biologics as like you I wanted them to be my last resort. Though if that's what you need to stay healthy then sometimes you just have to accept it, even if you don't like it. It's such a difficult and personal choice to make.

 

[my little penguin]

Also remember most members on here -are here because they need support and are the except not the rule.
DS was on remicade - it was miracle drug.
I know biologics have some scary risks but they are just that risks
that are put into numbers in front of us.

Have you looked into the risks of other things you do daily?

I looked before ds was put onto remicade :

AMoxicillain has a risk of steven johnson syndrome ( which can kill you)
Tylenol can damage your liver AND can kill you from steven johnson syndrome.
dying in a car wreck 1 in 250
Drowning 1 in 1000
risk of t cell lymphoma for NON ibd 2 in 10000

remicade PLUS 6-mp 4 in 10,000

So please look at ALL the risks you take in a day and benefit from
before you decide if remicade is too much of a risk.