How long is too long on pred?

Some of you may recall I posted about a week ago about how my treatment hasn't been working and has in fact gotten worse. I've been on prednisone since March 10th in various dosages. From 60 down to 10 and back up again. Currently I'm back up to 60mg, have been for a week and have another week to go at 60 before starting 10mg tapers each week...so an addition 6 more weeks of the stuff. I've never stopped bleeding. Just curious for those who have been here before if the steroids didn't help what you did and what's the longest your doctor has made you stay on this stuff?

Before I got my first colonoscopy in March and was dx, I would have streaking blood in my stool. But no other symptoms.

Now 5 months later I have bloody D (but not much since I haven't eaten much), constant cramps and nauseousness. And have barely been able to leave my house in two weeks. (And have now exhausted my sick time from work)

I'm also currently on flagyl and cipro for another 3 days. And tonight will be day 4 of using rowasa enema. Bentyl And florastor probiotics.

I seriously feel like every med I take it making things worse. I was never tested for C. Diff but am also concerned about that....when I do go it smells so bad I have to cover my nose with a towel.

I am so frustrated. I broke down in hysterics pretty much most of today.

You need to get your stool tested for c diff but if you are not responding to the oral steroids than you might need IV steroids for a few days
I would suggest adding in imuran or 6mp because they take a while to kick in
you may want to get a second opinion

if it is not your choice to be on the pred, you should get another doctor. It just does not ring right when you say "made you stay on the stuff." if you feel like the doc is "making" you do anything, it is not the right relationship.

while some people have problems with even short courses, many many people are prescribed pred for all kinds of inflammatory disease - and for longer than you have been on it.

it can really help tame a flare. if you want to try biologics or something else, refuse the pred. if your doc does not like this, replace him/her

take responsibility for your treatment

Have you tried vsl #3 yet? Sounds like the missing piece. Sorry you are having such a hard time.

No doctor ever "made" me stay on Pred. In fact I'm not sure I could have got one doctor to prescribe all the Pred I took. Basically, every time I saw a different doctor I got another course of Pred prescribed. I did this because the choice was Pred or surgery - even so, I relapsed several times and ended up back in the hospital (on IV steroids).

Frankly if Pred isn't working, then a day spent on it is too long. Even if it is working, you need to be able to fully taper off it and not relapse when you do. I always responded to initial high doses of Pred or IV steroids - but you don't seem to even respond at the high dosages. All you are doing right now is increasing your physiological dependence on Pred without even touching the underlying inflammation.

I was on prednisone for a full year on various doses. What is your treatment plan for uc, beyond just prednisone?

I went on in January and by March I was having my bicep surgically re-attached and 2 more problems after that.

Get off prednsisone I say.

Qing Dai helps.
DHEA helps.
MSM makes the little cortisol your adrenals produce more effective.

Last time it was hard I tapered off fast but had a huge energy problem afterwards and I was up to 80mg per day.

So glad I am totally off that stuff. The sooner you start the sooner your adrenals recover. Sulfasalazine does the most help for me when tapering off.

Flyingjen said...


I've been trying to tell her that I don't think the pred is working.

It's amazing that I need a rx to counteract every rx....

I have been there - something else your taking could be impacting the enzyme which converts prednisone into prednisolone. Your body cannot user prednisone as-is without this conversion.

If you cant figure that out you can get prednisolone or be admitted to hospital and when it is IV it is called Solumedrol.

What you can do is :

• eat only salmon in canola oil.
  
• consume psyllium seed powder not husk
  
• qing dai
  
• dhea
  
• Cortisone enema/suppository/whatever it will bring the inflammation way way down.
  

You might be steroid dependent i was diagnosed in November of 2012 with acute UC only invading a few inches into my rectum. I was put on prednisone and things got better but as they were weening me off things changed drastically. I ended up having extremely painful and bloody bowel movements at least 20 times a day. it got so bad I became anemic and had to be admitted into the hospital for two weeks. a second colonoscopy showed i now have full blown UC that's now invading my entire large intestine. I would definitely recommend asking your doctor if there's a chance your steroid dependent. It would explain why your symptoms are getting worse. I now go in every 8weeks for a remicade infusion. The day after my first infusion i noticed a change. My symptoms cleared up within a few weeks. I now haven't had a single flare up since.
Also my cousin has UC and has been on prednisone about 4 years now off and on when she has a flare up. The doctors are now worried about her kidneys since the prednisone is so harsh. She may go into kidney failure if she doesn't change her meds. So yes long term prednisone can be very hazardous to your body.
you definitely should try other methods. I hope you get better!