I am just starting my first titration... - ITP Support Assoc...

ITP Support Association

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I am just starting my first titration off of my 90 mg/day of prednisone. i am worried about coming off so fast.

gypsynurse profile image
6 Replies

I also am interested in moderated exercise, as well as massage therapy and perhaps sauna. any suggestions would be helpful!! thank you!

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gypsynurse
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NickyD profile image
NickyD

What is the regime for you coming off your 90mg of prednisolone?

gypsynurse profile image
gypsynurse

decrease 10 mg/day every 5 days

10mg a week is a fairly standard regime. It's usual to go slower from about 20mg with drops of 5mg per week. Some go even slower as they get down to 10mg or so. I did once, I did alternating days of 5mg and 0mg for a week before stopping.

gypsynurse profile image
gypsynurse

thank you so much, do you eventually get off and get to stay off of the steroids? any side effects? I am so exhausted, thirsty and constipated....any insight would help.

I did a three month stint of prednisolone and had 6 weeks off it before a platelet crash. My haematologist doesn't like people to be on steroids for too long so I then tried mycophenolate, but as that drug can take three months to work I went back on the steroids for those three months. Since then I have only taken it in small stints and at fairly low doses, and that was when I was waiting to start Nplate so was just biding time. I wouldn't use it again unless it was really necessary.

I too had all the side effects and the one that stayed with me for over a year after I'd stopped taking it was a tremor that would come and go.

gypsynurse profile image
gypsynurse in reply to

thank you for the information... a tremor.. OMG, this is becomming more fun by the minute :/

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