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How long for steroids to work

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Posted 9/8/2020 7:56 AM (GMT 0)
Long time since my last post here, as have been in remission for the last 7 years - but was hit by a flare up that I'm struggling to get under control.

I was diagnosed over 20 years ago and have been on Asacolon & 6mp as my maintenance meds in the past. However, due to being in remission for so long, foolishly went off meds with my consultants approval.

This flare up started approx 6 weeks ago - started Asacolon 3* 1800mg daily, on 40mg prednisolone for 2 weeks, with a 5mg taper every 7 days Now down to 30mg for a few days and symptoms near as bad as they were:
urgency few times a night, bleeding and morning clustering.

Any recommendations on next steps, next appointment with the consultant is not for another 2 weeks.

Any advice much appreciated !
Posted 9/8/2020 1:25 PM (GMT 0)
You have to stay on 40 until you are in remission. Tapering while you are still in a flare will stop any progress. My doc (Mayo clinic) says he is OK up to 6 weeks at 40. In some cases I.V. steroids are needed.
Stopping maintenance meds usually leads to this. I would seriously consider finding a new consultant.
Posted 9/8/2020 1:30 PM (GMT 0)
Thanks for the quick reply !!

I have to admit, the consultant wasn't too happy to agree for me to go off the meds, but did say it was ok. Looking back now, I should have stayed on them, but what's done is done.
I will see if I can get a phone appointment to discuss the steroids, as the advice was not to stay on 40mg longer than 2 weeks max - which isn't long enough for me obviously.

At what point wold they start the heavy meds again, it's been so long since I had to use any, I am not sure what is the current go-to if Asacolon isn't sufficient - I think they mentioned 6MP isn't the recommended one anymore ?
Posted 9/8/2020 1:55 PM (GMT 0)
There are tons of biologics. I started entyvio recently (even though I was almost completely in remission) as I seem to be becoming resistant to steroids. I had a flare late last year that took 6 weeks at 40 to get under control. It turns out that I had an infection that was probably messing with my immune system and keeping the flare going (valley fever). The docs at Mayo clinic figured this all out, which shows you how much of a difference competent medical care can make.
At 30 mg you are getting all the side effects, but there is really limited to no chance it will get you back in remission at that level. Bad situation to be in.
Generally you would give 40 a chance to work for a lot longer, then if that doesn't work, some kind of biologic would normally be the next step.
How extensive is your U.C.? If you have left sided I would highly recommend adding a mesalamine enema. It can make a huge difference.
Posted 9/8/2020 2:08 PM (GMT 0)
Agree with CGK's advise. Rowasa, a mesalamine enema, has stopped several initial flares for me.
Posted 9/8/2020 2:17 PM (GMT 0)
Thank you so much for the much needed advice !!

I forgot to mention, I used the steroid foam enema for the last 10 days with no improvement and have Salofalk enemas to start tonight, maybe that's the trick that helps.

I was diagnosed with pancolitis, but in the last scope 4 years ago there was no active inflammation. My last flare was tricky to get under control, ended up with IV steroids for 24 hours to give me a kick-start.

My gut (no pun intended) tells me that the major inflammation is near the rectum (bright red blood and the feeling of pressure).

Finally, should I go back to 40mg now for another week and hope it works before tapering ?
Posted 9/8/2020 3:05 PM (GMT 0)
"Finally, should I go back to 40mg now for another week and hope it works before tapering"

go back to 40 and STAY there until your symptoms are resolved - no one on this earth wants to be on prednisone, but the fact remains, it works -

if your consultant said it was ok to stop your meds, then i say it's ok to give your consultant a toss out a window (preferably a third story window) ---------- idiot !


TT
Posted 9/8/2020 4:19 PM (GMT 0)
My doctors always say that you have to stay at 40 until your symptoms are basically gone. If you taper too soon you end up yo-yoing and could have to go even higher than 40 mg a day. Hit it with everything you can, oral and rectal meds are your best bet.
Posted 9/9/2020 1:10 AM (GMT 0)
Perhaps I misread the studies, but it sure looked to me like mesalamine enemas are much more effective than steroid. Hopefully they work for you.
Posted 10/19/2020 11:55 AM (GMT 0)
Wanted to come and give a quick update after getting great advice here.

I rang the IBD nurse at the hospital, who told me the same - go back on 40mg steroids, add steroid enemas and keep up with the Asacolon until the next appointment.
They brought my appointment forward by a week and when I went in, they gave me a sigmoidoscopy, chest x-rays and full blood woks. Inflammation visible as far as they could go up with the scope (as I was without sedation) and recommended I start humira next.

I had my initial loading dose of humira within a week of the appointment, second loading dose also completed and now on 10mg of steroids hoping to taper down over the next few weeks, while getting humira every two weeks.

Finally feeling near normal and see the light at the end of the flare-up that took my by total surprise.

This forum is such a great support network - thank you !
Posted 10/20/2020 10:45 PM (GMT 0)
No worries - it’ll eventually get under control again. I foolishly tried going RX-free after being in remission for 20+ years ... it took a good 6 months with higher Asacol dosages and Rowasa enemas before things were back under control. My gastroenterologist gave me the “stink eye” for trying this but he understood why I wanted to attempt it.
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