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Back on pred.

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Ulcerative Colitis
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Posted 2/11/2016 9:29 PM (GMT 0)
As the title says I am back on pred. 20mg for 3 weeks, then reducing every three weeks.

Have only been off a taper from 40mg by 5mg every week for two weeks but frequency and urgency symptoms are creeping up.

Had a appointment with a registrar last week and it was suggested another colonoscopy because I just didn't feel right and I was still having about 5 - 6 bms a day. Now, today I must have been 9 x in an hour and a half and then more throughtout the day.

I have also been prescribed Salofalk granules 3g instead of Meavant (lialda). Have only been on them three days though.

Has anyone got any experience of these. I must admit I am worried because every time I have tried some different mesalazine (Pentasa and Colozide) after two weeks I was getting lots and lots of bloody D so had to go back on mezavant. Things immediately then settled down. I am not intolerant to mesalazine tho as I can take mezavant and use salofalk enemas.

I cant have any of the biologicals because of my neuropathy and because I have had a malignant melanoma and they are reluctant to give me aza because of my neutropenia even tho heamo say I can have gcsf injections. So I feel frustrated that I don't seem to have any treatment options left other than pred and they don't want me on that long term either.

Thanks to everyone who has taken time to read my rant.
Posted 2/12/2016 1:44 AM (GMT 0)
I am sorry you've had to go back on the pred! Maybe, once the symptoms respond, you could try a really slow taper? Maybe go down 2.5 mg each week rather than 5 mg?
We're all different, but "slowly" is finally how I weaned off pred years ago, I even would alternate some weeks, 2.5mg one day and 5 mg the next for a whole week before going to 2.5 each day for a week, etc.

You respond well to the mezavant? But you are starting Salofalk granules instead? Why? (Maybe ou spoke to that in another post and I didn't see it; if so, I apologize!)

We all need to rant from time to time.
Posted 2/12/2016 2:04 AM (GMT 0)
Have you considered entyvio?
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