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Hi all, since the last time I posted here (a while ago!) I have developed Crohn's (Woo Hoo!) I've been taking Budesonide (otherwise known as Entecort) for a little over a year due to having too frequent incidents of blockage at the end of 2015. Ironically at the end of last year I had even more frequent incidents of blockage, 3 in under 2 weeks... My GI did a pouchoscopy, and that's when he determined I now have Crohn's. I've basically been on a liquid diet till I can find something that'll help (I'm on something new now, but it's not helping as yet, so will only post if I get positive results.)

In case the above medication doesn't work, the GI wants me to start on either 6MP, Humera, Remicaid or Stelara, he says I should start sooner rather than later to avoid surgery.  I have long resisted those meds because even antibiotics wipe me out. I see young people getting these heavy duty drugs and getting tired, I'm older, and don't have a lot of support so do not relish the prospect of being tired all the time. I was hoping you nice folks could give me some feedback about your experiences with the above medications, or any alternative remedies that worked for you?

Thanks so much!

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Generally, I tolerate meds pretty well. I feel fine on antibiotics. I know the fatigue is disease based for me and not the meds because the fatigue is episodic, while the meds are continuous.

One issue I am dealing with now is some rather severe eczema. Is it drug related? My docs think not. I've had eczema most of my adult life, but never this bad. I'll be following up with dermatology soon and maybe a skin biopsy will reveal a new diagnosis. 

Jan

Jan Dollar

Yeah, that's the problem I don't tolerate meds well which is why I've been avoiding the biologics or immunosuppressants for as long as I have. I read about a new person here who spoke about a diet that helped him, but when I read about it I realized it probably wouldn't work for me.

Yikes! Eczema? That's not fun. The doctors not thinking so doesn't mean they're right. Were you on a new med or increased dosage when the eczema got worse? Or maybe you've just been on the med too long? Man, that's tricky all right. Hope the skin biopsy helps Jan! Best of luck!

 

 

 

B

I am on Remicade AND Imuran (azathioprine). It is a lowdose of Imuran, to prevent antibody formation to the Remicade. So far so good. Been on it since about May 2016.

I think I liked Cimzia and Simponi best in regard to other biologics. They are self administered, don't sting, and had an interval that was long enough to allow me to travel without dealing with injectables thatneed refrigeration. Cimzia also has a program where they will pay for up to $11,000 in deductibles and copays (Cimplicity). What was great about it was that you did not need to submit financial need applications. They worked well enough for my arthritis, but I developed chronic pouchitis, so I needed a new strategy.

Jan

Jan Dollar

I am on Remicade and Imuran too. After Humira lost its effectiveness, I have finally had a relief with Remicade. However, it seems I will have to have my infusions once every six weeks rather than eight weeks, which is believed to be the usual maintenance dose. I should have switched to Remicade long ago, but  I was scared of all the side effects and complications that might be seen in the long run. 

My quality of life is much better. The only disadvantage compared to Humira is the infusions have to be administered at the hospital, and this is still a big inconvenience for me although I teach at a university with a hospital - medical school.

Linguist
Last edited by Linguist

Thanks Linguist! I've felt the same way, scared of side effects. Whenever there's a side effect I'm likely to get it! But I was particularly concerned about fatigue... But if your quality of life is improved that's a huge plus. 

Luckily, I think the drugs are administered at my doctor's office, and I live close by so hopefully that won't be too much of an issue.... If my current medication pans out (which sadly, I fear it will.)

Many thanks!

B

If you have an IV infusion (Remicade, Entyvio) it will be done at an infusion center. I have mine at the oncology clinic at my Kaiser Med Center. Most doctors offices are not set up for infusions.

Humira, Simponi, and Cimzia are subcutaneous injections that you self administer at home. No office visit is necessary, other than the first "training" session.

Jan

Jan Dollar

My  doctor's office is actually an IBD clinic, and they are set up for infusions, which is how I know that a lot of the patients do get tired (from their various  treatments) and a lot of young patients!

Yuck, self administered? I have visions of my dog jumping up on me while I do it (kidding.) As I wrote, I will ask about the Simponi, and Cinzia. Thanks Jan.

B

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