Still flaring off and on

armstrongpilot · Post by **armstrongpilot** » Tue May 19, 2020 7:34 am

Been having issues for a while now. Been on entocort....tried to get off and it went bad in 2 days. Back on full dose....doctor is making me get a ct scan because he doesnt feel this is lc.....frustrating. should I try imuran? Or keep with the entocort....it seems that the 9mg is working ok.....less doesnt seem to for long.

Post by **tex** » Tue May 19, 2020 10:38 am

Are you doing all your own cooking? Most restaurant meals that are claimed to be gluten free, are not, so you can be sure that they're often not free of the other food ingredient sensitivities either.

Imuran works fairly well for most people, as long as they continue to avoid gluten and their other major food sensitivities. It usually takes several weeks or months to work up to an effective dose (and it requires regular tests to detect possible liver damage).

The downside is now that we will probably have a Covid-19 threat for many years, a suppressed immune system makes a patient a sitting duck if they're ever exposed to the virus. Anyone with a suppressed immune system may become vulnerable to one of the cytokine storms that have made Covid-19 so notorious as a fatality risk.

Note that this is just my opinion, and I'm not a doctor.

Tex

armstrongpilot · Post by **armstrongpilot** » Tue May 19, 2020 10:57 am

All I'm eating now is white rice...beef....turkey and rice check.....those worked for 5 years.....but now I'm messed up. How long can I safely stay on 9mg entocort?

The turkey i eat has rosemary extraction it and i know soy messes me up....maybe that is hindering me.

Afraid of imuran causing cancer or something worse then lc.

Post by **tex** » Tue May 19, 2020 2:16 pm

It might be the rosemary extract. Or it might be the Rice Chex. A number of us can't tolerate Rice Chex, especially while we're still reacting. It might even be the beef. It might be all three of them. Remember — just because we can tolerate a food when we're in stable remission doesn't mean that we can tolerate it when we're not in remission.

At somewhere around a year of use budesonide begins to have a significant effect on (suppression of) the immune system. The exact time is difficult to project, because it depends on how sensitive we are to budesonide.

Tex

brandy · Post by **brandy** » Tue May 19, 2020 5:00 pm

Hi Pilot,

Have you tried cholestyramine? I've done both budesonide and cholestyramine. No taper off is required of the cholestyramine. Cholestyramine works for most of us but is more benign than budesonide and definitely more benign than imuran.

That said, if the budesonide is working at 9 mg it may be a time thing. i.e. You may just have to hang on the budesonide awhile.

If you decide to do a drug change I'd try the cholestyramine before Imuran.

brandy · Post by **brandy** » Tue May 19, 2020 5:01 pm

The rice chex would be something I can tolerate in remission but would not tolerate in a flare. I think it is too many ingredients.

brandy · Post by **brandy** » Tue May 19, 2020 5:02 pm

Pilot, these are also very stressful times. Flaring in these times does not surprise me.

armstrongpilot · Post by **armstrongpilot** » Wed May 20, 2020 7:37 pm

The only thing I'm stressing about is feeling like garbage lately. Seems safe foods aren't working and running out of foods to eat.

armstrongpilot · Post by **armstrongpilot** » Fri May 22, 2020 12:02 pm

Going to my cat scan today......hopefully it isnt a long procedure. Hoping to find some resolution to this mess I'm in right now. Not really having runs....however lots of belly pain....no appetite and lots of heartburn again. Only eating white rice and turkey. Thought I had this figured out....5 years of no meds...and now it seems it is back in force