HealingWell
Search Close Search
☰

When to start taper?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/21/2015 6:25 AM (GMT 0)
Hello again

I am on day 14 of 40mg Prednisolone. Improvement with bms which are down to an average of 4 to 5 per day; however, I still have pronounced symptoms of blood, mucus and cramping, as well as acid reflux. I still cannot eat well and have dropped more weight. I certainly couldn't work at the moment due to urgency and generally feeling unwell. Question: Should I start the Pred taper or keep going to get more improvement before tapering? Doctor had suggested a week of 40g and I have just finished week 2. I had become steroid dependent on my last course two years ago.

Any thoughts out there? Normally I would be feeling much better and able to taper, but this was a really severe flare.

Yuletide greetings without the chocolate log!
Catherine
53 years old, Balsalazide, Pred 40g, rectal meds, gluten and dairy free, Biokult and other supplements. Severe flare for 7 weeks.
Posted 12/21/2015 8:36 AM (GMT 0)
What maintenance med are you on and for how long have you been on it?
Posted 12/21/2015 12:19 PM (GMT 0)
The signature mentioned balsalazide which is also known as colazol a maintenance medication similar to mesalamine/asacol.
Posted 12/21/2015 3:08 PM (GMT 0)
My doctor had me on a steady dose for 3 weeks and then start to taper. (I started at 30 mg, though). He said as long as I see improvement, it is ok to start the taper, but if my symptoms get worse, to call him for instructions. He wanted me to taper by 10 mg, but that was too much of a drop for me, so he had me do 30 for 3 weeks, 25 for 5 days, then 20 for 15 days, etc. Now I am down to my choice of 2.5 mg every other day for a week or cutting my pills into tiny pieces that equal around 1 mg a day for 5 days, then the tiny piece every other day for 2 more doses.
Some people are told to say on the high dose until all bleeding stops but those were not my instructions.
Posted 12/21/2015 3:13 PM (GMT 0)
My second time on pred didn't work as well as the first and took a heck of a lot longer to see decent improvement. I really did much better just upping the rectal meds.

You might need a higher dose of pred or to think about moving to stronger meds.
Posted 12/21/2015 9:12 PM (GMT 0)
i am on 40 mg usually takes 3 to 4 weeks for me to see real healing i wait for 4 or 5 days with much less bleeding and urgency to go before taper i have been at 40 for week 2 2 lialda am 2 lialda pm rowassa enima at bed good luck
Posted 12/21/2015 11:24 PM (GMT 0)
Thanks all! Sadly the consultant admitted into hospital today so now on Iv steroids! What joy it all is. Lying on acute medical thinking how much this disease sucks. Never mind - still hoping for some sort of Xmas dinner without the sprouts perhaps? He said if I couldn't taper after two weeks, I needed to be in hospital. Quite hard ball though I was vomiting on the loo this am so not exactly winning. Good luck everyone for Xmas period. Catherine xxxx
Posted 12/22/2015 8:59 AM (GMT 0)

iPoop said...
The signature mentioned balsalazide which is also known as colazol a maintenance medication similar to mesalamine/asacol.


My bad. It didn't look like a sig so I somehow overlooked it. I often have concentration problems :/

Catherine, it sucks to be in the hospital but I'm glad you're being taken care of.
Posted 12/22/2015 10:19 PM (GMT 0)
Hi Andrina

It is really horrible! Had a flexible sigmoidoscopy revealing acute flare - the iv steroids are not shifting it yet (over 24 hours) but I just hope it starts to improve. Still blood, mucus, blood, cramping, nausea on a hellish acute care ward! Would just at least prefer to be on a proper gastro ward - British NHS in crisis! Staff are lovely though!

When will we get the breakthrough we need for this disease?? Enough already after 34 years!!! Sorry for venting.

Hope you're having a happier time of things.

Festive greetings, Catherine
Posted 12/22/2015 11:39 PM (GMT 0)
Hi Catherine, hugs to you, being in over Christmas can't be nice.

I was going to respond to your original post by saying that I would not start tapering until the bleeding has completely stopped. A bit late in this case but maybe useful for next time?

Hopefully you will start to feel better soon, and see some improvement. IV steroids are usually quite fast so hopefully should kick in over the next couple of days.

Have you told them about the vomiting? If you're only doing it on the toilet they might not know you are being sick. They normally give you some kind of anti-sickness medication, either by injection or tablets.

I agree the NHS is awful at the moment, just been going downhill lately.
Posted 12/27/2015 8:09 PM (GMT 0)
Catherine how are you doing?
Posted 12/31/2015 4:48 AM (GMT 0)
Hi Andrina!

Came out of hospital on Tuesday evening. Holding up but by no means out of the woods. I am having another remicade infusion next week and then hopefully starting azothiaprine. Still getting acid reflux and no formed stools yet. Problem is I have to start tapering pred down from 40mg tomorrow, which is making me nervous because I don't know if the remicade is working at all. It's all watching, waiting and trying to stay positive. Hard though…. Been off work since November 10th and do not see how I can go back yet. All very worrying….

Catherine x
✚ New Topic ✚ Reply