Need new med, advice, thoughts on options

[honestmoe]

Hello All,

Crohn's for past 12 years in terminal ileum. No surgeries. I maintain a strict diet and have been lucky. First flare was remedied using Remicade for 3 years. Was flare free for years. Started to flare again last summer, went on Humira. Have been on it 6 months and developed severe side effects- tightness in chest to point I have trouble breathing, and severe fatigue. Stopped the Humira and now Im somewhere in-between remission and a flare. The Humira was working well for the Crohn's but the the side effects are too severe.

Have a Dr. appointment on Friday to discuss next course of action, which medication would you suggest? I've read some bad stories about going back on Remicade so I'm not keen on that idea. Steroids have never worked for me. What's left- Cimzia? Imuran? 6MP? Anything else? Thoughts? Experiences? Thanks all.

 

[Crohns08]

You said you follow a strict diet? Are you following one in particular or just what doesn't make you hurt?

 

[honestmoe]

My diet is something I've created for myself through much trial and error, and suffering. I think there is no one size fits all Crohns diet so what works for one person would harm another. I know people with Crohns that swear by Oatmeal and eat it all day, one spoon of the stuff would send me to the bowl for hours.

 

[Crohns08]

I'm just wondering because for me diet takes time and once I remove processed carbs it makes a world of difference within a few weeks to a month. I have also found recently that a lot of fat and fried things as well as yeast are really harmful and inflammatory. That being said I would definitely call up your GI. What meds they use to treat you will depend on severity of disease, location, and what you've failed in the past. Don't sit on your illness and try to tough it out, crohn's can snowball really fast.

 

[honestmoe]

When you say processed carbs what would be an example? I basically live off carbs like rice and pasta (never whole grain, or brown rice). Fatty and fried foods are definitely triggers I avoid those at all costs. Spicy foods, foods with any substantial fiber content, all meats except chicken and fish. I also avoid all dairy. Eat a lot of soup, just have to watch the sodium on that stuff.

 

[worriedboy]

Imuran/6MP is another class of drugs than biologics, but it's possible yout GI will decide to go in that direction and give it a try.
Hope you find the next drug to keep you in remission.

Out of curiousity, is your Crohn's a stricturing type ?

 

[honestmoe]

I was just fasting/clear fluids for 48 hours and using Prednisone to heal up so food would go down again, so yes I believe it's the stricturing type. Good guess, why do you ask?

 

[worriedboy]

First I must say I am somewhat confused since you said in your first post that steroids never work for you, on the other hand you now say you are taking them to calm down your flare ?
Anyway, when they ask me I always say it's too bad you cannot take pred. long term... it's a very strong med for Crohns.


Since you have a stricturing Crohns I wonder whether your GI was able to say how much is inflammation and how much is scar tissue ?
Hope that it is mainly inflammation which will be supressed by the meds and thus your stricture will open wide.


I hate strictures

 

[honestmoe]

When I was first diagnosed the doctor prescribed Entocort, bear in mind this was 12 years ago so Im not sure what other meds we're using now were available at that time. As it was having no success in getting me into remission the doctor added Prednisone, which also did not succeed in putting me into remission. After a few years of this mess I changed doctors, and the new doctor recommended Remicade which worked like a charm.

So for me Pred is good for a temporary small bowel obstruction, but remission is not happening unfortunately. Im guessing the doc will want to do a small bowel capsule again which I've been avoiding. Maybe that will tell him how much is scar tissue and inflammation?

 

[worriedboy]

capsule ? you mean pillcam ?!
If you got a stricture this might not be a great idea... at least make sure to have the "dummy" pill before the real thing, which dissolves if stuck.

As far as I know MRE imaging sometimes can tell how much of the tissue is fibrotic and how much is infalmmatory,
Other than that during colonoscopy the DR gets a look on the topical layer and using his experience can estimate if you got active inflammation and thus it is reasonable to assume it exists also in inner layer or not.

Anyway, being on pred. is also a "steroid testing״. If you react well it says at least a part of it is inflammatory.

 

[honestmoe]

That sounds painful. The doctor has had trouble finding the source of the inflammation, when I was diagnosed years ago it was my terminal ileum. I've had a recent colonoscopy, endoscopy, and assorted Barrium tests. He wanted to do the small bowel capsule next, something about swallowing a pill and wearing a monitor. Im getting test weary.

Three days of 10mg Pred did the trick, food wouldn't go down it was rather unpleasant. What's your thoughts on 6MP, I'm reading a lot of complaints about nausea. More nausea doesn't sound like much fun.

 

[worriedboy]

what I think ? nausea it is !
But :
- not for everyone
- it tends to subside ponce your body "adjusts" to the med
- you might ask your doc to start with a very low dose like 25mg, which is sub-theraputic, only to give your body a better chance to get used to it

if you get past the first couple of weeks, most chance you will be ok.

If you start 6mp though, make sure to have your regular blood works.

 

[honestmoe]

Doc wrote a script for Simponi & Pred..Upper Endoscopy and some mid section scan I cant recall right now..exciting times indeed..

 

[worriedboy]

Simponi is an interesting selection... it is not a "classical" biologic for Crohns. Usually if not Remicase/Humira than they go for Cimzia.
It will be nice of you if you report back once you get to know how it works for you. I hope it sends you to remission as other biologics did, but wo/ the side effects.

I see that your doctor takes the top->down approach, i.e. going for the aggressive treatment. It's kinda becoming more and more of a standard.

Feel well

 

[Maya142]

My daughter was put on Simponi for her AS and Crohn's before trying Cimzia. Both her rheumatologist and GI prefer Simponi to Cimzia. She has been on Remicade/Humira multiple times.
Simponi hasn't been in trials for Crohn's but has been approved for UC so it seems like more GI's are prescribing it off-label for Crohn's.

 

[honestmoe]

Good luck to your daughter I hate that kids get this. I was lucky in that I didnt get it until I was 28.

I haven't heard back from the Dr regarding the Simponi, I imagine he might be having some difficulty getting approved he's usually pretty quick. Just doing 10mg of Pred now and hoping for the best. Received a called from his nurse- my c reactive protein was slightly elevated, Im guessing that's some sort of inflammation marker.