Opinion remicade or low dose ( .5 mg prednisone )

I've had colitis for 21 years . I'm now 47 . I've mostly been able to function pretty well on 10 asacol a day . However I've had flare ups over the years where I've needed to take prednisone . The prednisone ( 20 mg ) always clears it up completely . I seem
To do just fine being on .5 mg ( half a pill) until I get to zero and try to go off completely . Then slowly a flare starts and I land up needing to take 20 mg again . My dr says it's ok to stay on .5 or 5 mg as a maintenance dose , and that my bones are ok . There have been many times I've thought about taking the biologics , but frankly I'm very scared about the side effects . Every time I try a new medication I get side effects worse then the disease ( entocort and 6mp both gave me pancreatitis ). I Wouid stay on this low dose of .5 mg .Does anyone have any advice ?

Ulcerative pancolitis 21 years - 47 year old female
Current meds -1.5 mg prednisone , 10 asacol

Personally I think any dose of prednisone as a maintenance drug for UC is too much. But you will hear from others that long term prednisone use at low doses are fine. I find the irreversible side effects from prednisone to be frightening; and many of those you don't notice until after completely weaned off. If I were in your shoes I would be getting a second opinion if you opt to stay on prednisone.

Sue

I don't thing .5 mg is bad. I would take that over 6mp or any biologics. I would not expect many side effects on that does still make sure you supplement calcium. Your body makes 7 to 8 mg of steroid. anything over will make your body to stop that production but on such a low dose. i will not worry.

Hi Pam Smith,
I've tried pretty much all the UC meds . 6mp gave me pancreatitis , entocort same thing , for some reason prednisone at not such a high dose ( 20 mg ) helps me achieve remission . I know everyone raves about the biologics and hate prednisone , but that dose is quite small . I can't figure out why .5 mg keeps me well , but maybe it is worth staying on .

Ulcerative pancolitis -21 years -47 year old female
Current meds- prednisone 1.5 pills , 10 asacol

Mesalamine enemas can absolutely be used to maintain remission -- my maintenance dose is twice weekly, because studies show that those who use them twice a week in conjunction with oral meds stay in remission longer than those only on oral meds. I've had UC for five years now and have never gone totally off them, and I'm just now having my second flare. It's an incredibly mild flare, and I'm treating it with daily mesalamine and hydrocortisone enemas; I think I'm actually back in remission already.

It's pretty shocking, IMO, that your GI didn't suggest you use mesalamine enemas to help maintain remission.

Hi fruit girl,
It's half a pill ( sorry 2.5 mg ) not .5 mg that I Wouid stay on. Each prednisone pill is 5 mg's . I'm in canada and on a generic version of asacol, and they are 400 mg pills , and I take 10 of them . Thanks everyone for your advice .

Thanks for your advice ! So much to think about all the time . I'm going to try the salofalk enemas .

Hi Indy Cat,
That makes me feel better to know that your Dr said the same thing as mine . It's really the only thing for me that also keeps me out of a full flare as well . When I tried to get down to zero I get a full on flare . So obviously I Wouid much rather be on low dose and be healthy then deal with a full flare .

Have you tried using 1 mg pills to wean yourself off the prednisone? I had to go 1 mg by 1 mg to get myself down to zero. I would estimate it took me at least six weeks to get down from 5 mg to 0. Maybe your body needs an extra slow taper?

Have you tried any alternative options? I stay in remission using Curcumin (turmeric). Something like that, or Boswelia, or resistant starch, or psyllium might get you over the hump so you can drop the Pred.

To answer your original question, I would stay on the 2.5 mg/ day of prednisone versus going on the Biologics but I would also try a lot of different options to see if I could wean myself off prednisone, too.

Personally I don't believe tapering off is ever going to work if it hasn't worked before. I would either try the low dose thing or go to another plan altogether.

The biologic medications are effective, safe, and have done wonders for me and others. You need to weigh the risk verses the benefit. 60+% of patients see an improvement after taking remicade. The odds of adverse side effects are less than 1% (lymphoma 6 in 10,000 or 0.006% when used concurrently with immunosuppressive meds). All of the other biologics carry the same risk.

I respectfully disagree with Gary that tapering off pred isn't going to work, as you haven't tried tapering off pred while using mesalamine enemas in conjunction with oral meds.

I have never tried tapering off prednisone using the mesalamine enemas, but I am so scared to try . It's possible it may work , and possible it may end up landing me in a vicious cycle flare up . All I know is this , I seem to stay well on 3.5 mg prednisone ( half a pill) and I have no idea why . I don't know if it's even worth trying to go down to zero . You guys know how bad a flare can be ! I have considered going on the biologics several times but mainly when
I have tried to get off my half a pill of prednisone and I flare up . What worries me about the biologics is the everyday side effects , like feeling tired , getting sick more often . I've never experienced those side effects while on low dose prednisone. In fact, I'm a runner used to running 30-40 miles a week . It would be really upsetting if I couid not run because I was too tired , or I started getting sick more often. What to do ?