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Posted 4/14/2021 9:21 PM (GMT 0)
Hi everyone
Newly diagnosed here since December 2020.
Had mucous and bleeding for 3 months before colonoscopy.
Started on predfoam at that stage which didn't work, then prednisolone 40mg tapering. Which worked OK until I had about 3 weeks left I started getting excruciating lower right back pain & fatigue, but no bleeding or mucous.
Started on salofalk 3 weeks ago and mucous, Cramps, urgency has started again. Really fed up with it.
I'm back to work next week for 12hr shifts and don't know how ill manage. Anyone have experience working like this. Or what's the next treatment generally
Any help or advice appreciated
TIA

Post Edited (Lotusflower) : 4/14/2021 3:26:14 PM (GMT-6)

Posted 4/14/2021 10:04 PM (GMT 0)
You should call your doc and tell him what is going on. You might have to increase the pred and taper more slowly.

Is salofalk oral or rectal? Some people can have reactions to mesalamine or the sulfates in the rectal meds that makes things worse. If that is the case for you, you may have to use a different class of medications.
Posted 4/16/2021 8:04 AM (GMT 0)
Thank you for your reply.
It's salofalk enema.
I have a review scheduled with the GI team in 3 weeks so will wait for that.
I've been having a raised HR also since the symptoms have started last October. Could this be related to the UC? Does anyone else have experience like this.
Posted 4/16/2021 11:06 AM (GMT 0)
The raised heart rate could be UC but is most likely the prednisone. I agree that you might need to slow your pred taper down a bit but you should also call your doctor and let them know what is happening. 3 weeks is a bit long to let this linger.
Posted 4/16/2021 11:56 AM (GMT 0)
Thanks for your reply.
The raised HR started before I started pred, around the time I started having symptoms.
I've been finished pred now about 4 weeks, just on salofalk now.
I'm new to this, is it unwise to let it linger until the next review? I've a lot to learn!
Thanks
Posted 4/16/2021 12:51 PM (GMT 0)
Raised heart rate can also be from dehydration, common during flares with frequent diarrhea. Make sure to drink a lot of water. I'd drink a tall glass of water after every poop. Consider electrolyte sports drinks like gatorade and competitive products.

If you get worse during a Pred taper, that means either you're going to fast or your maintenance meds aren't sufficient. There's a lot of trial-and-error in initially treating us and not unusual to need to add more meds and stronger doses.

If you get worse during a taper, go back to the last safe dose, hold there, and contact your gasteroenterologist for further instructions. He/she might want to wait longer before proceeding with a taper and/or adjust your meds before continuing the taper.
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