Medication for Crohn's...

I have been on one biologic or another for over a decade. I find that I have more energy, not less, while on them. The only time I am not is when I am in an arthritis or pouchitis flare. So, for me at least, it is the inflammation and disease that is fatiguing, not the treatment.

Oh, and I am 61.

Jan

Thanks so much Jan... But how do you react to other medications? As I mentioned even dopey antibiotics fatigue me. I know the diseases can be fatiguing, but I find the meds made me more so. Other than Pentasa, and Budesonide which both helped initially... Did you like any biologic better than the others? Oh, and I'm 59!

Thanks!
B

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

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!

Predicting failure or intolerance of a medication based on problems with unrelated medications may not be the ideal strategy.  Sure it might not work acceptably for you, but you really don't know that. You can always stop a med if it doesn't work out, but pessimism just takes away options. 

I've been on Immuran (similar to 6MP) for 3+ years for chronic "pouchitis"-never felt better! I like that I still have biological in my back pocket if/when this no longer keeps working well. 

I think the only way you will know how you will tolerate a new med is to try it.  Good luck!

Thank so much, I'll  ask my GI about Immuran, I think he may have mentioned it before? I know he preferred the biologics to 6MP, but he was letting me decide. 

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

Oh bummer. Sorry I didn't reply yesterday my computer was on the fritz. I guess the Cimzia and Simoni won't work for me then, chronic pouchitis has been my problem from the get go. Bummer!

Why don't you think Simponi or Cimzia won't work for you? They worked fine for me, until they lost effectiveness. The only reason we went with Remicade over Entyvio is because there was more data on it.

Jan

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.

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!

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

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.

Ah, I see! I thought you were talking about your doctor's actual office!

Jan

Well it IS my doctor's actual office, but it's called a clinic, there are about half a dozen doctor's there. The only infusions I've had are for iron. That's when I see all these young patients and ask them how they like whatever it is they're getting, most do complain of fatigue.