How many times you been on pred since diagnosis

[rollinstone]

Hey gang,

Just wondering how many times ppl have been on a pred taper since diagnosis, I think iv been on atleast two long tapers a year since 2012, which is a bit concerning because I now have osteoporosis from it... Generally start at like 40/35mg n then taper down fortnightly or every ten days depending on how symptoms are... The reason I ask is because I'm concerned if other potential side effects, specifically things like necrosis, which I pray I never get.

 

[Catherine]

Sarah was dx at 16. Almost 3 years ago. She has had done 3 pred tapers.

 

[FrozenGirl]

I was on pred continuously for about 8 months, couple weeks off, month on, then taper to now finally off.

 

[BlackButterflies]

Since my diagnosis earlier this year I have had 3 pred tapers. The first two were for one week each, the last taper was for a month. Just couldn't get the bleeding to stop.

 

[rollinstone]

Wow, all my tapers have been over a few months, I find one month tapers are just too short for me and I end up having to re up my dose... Has anyone has any lasting side effects so far? I.e osteoporosis etc?

 

[SarahBear]

The only time I've been on Pred is when I was first diagnosed (fortunately). I had a terrible reaction to it. My taper lasted several months, as well. The only lasting side effect I had was recurring zombie nightmares for about a year afterwards (these started while I was on Pred - every time I did actually manage to sleep, I would have one - for the following year, they were the only dreams I had and I had them once or twice a week).

 

[Lisa]

I've lost track over the last thirty years or so...many!

 

[Polaris]

I've been on Entocort 4 times since my diagnosis in 2012.

 

[sue2003]

I've lost track over the last thirty years or so...many!

Me too

 

[ash7752]

was on pred twice back to back because of my strictures and then entocort for 3 months to try and control my d which didnt help.

 

[Roxymusic]

I'm with Sara and Sue - too much prednisone over my 45 years with Crohns & taking Imuran, 40mg prednisone and Remicade now. It would be nice to find some Antarctic Penguin Liver juice or something that worked better.....