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Pred tapering question from a newbie

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Ulcerative Colitis
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Posted 7/20/2008 12:59 AM (GMT 0)
I apologize in advance if this has been covered recently, as I am new here and haven't had a chance to dig too deeply into the forum yet!

I am currently tapering off of prednisone (my UC has been kept under control through injections for a Humira clinical trial as well as Asacol).  I started at 40mg/day and haven't had any major issues until recently.  At 20, they had me slow down from dropping at 5mg increments to 2.5mg increments.  On Thursday of this past week, I went from 17.5mg/day to 15mg/day.  Last week, I  noticed my BMs were a bit softer, and I was going more like 2-3x/day rather than 1-2x, but no big deal.

Now for the past two days, I am feeling bloated and things are quite grumbly.  I am uncomfortable for at least some of the day and while I don't have D, my movements are quite quite soft.  No blood though, and even though yesterday I was in the bathroom 4 times, today has only been twice (thus far).

Do you think this is cause for me to slow down the taper?  Call the doctor?  Wait and see if things even out in a few days?  I want off of this stuff like nothing else, so the last thing I want to end up having issues with tapering too fast and have to up the dose again!  I have heard that the tapering can be more problematic at the smaller doses, so I am wondering if I should take it a bit more slowly than I have been.  I just don't know.

Also, since starting the taper, I am losing a lot of hair.  I have a lot of hair, so I haven't been too concerned, but with the rate I am losing it, I won't have a plethora of hair for long! (too bad I haven't started losing the extra facial hair that I acquired thanks to the pred!)  Anyone have issues with this before?

Edited to add-Another issue I have had since starting the pred is that I haven't had a menstral cycle.  I have always been like clockwork, and had my period right before being hospitalized in early April.  That was when I started on the pred, I have never been on it before, and since then, no period.  I have had a couple times of brief spotting, but nothing that I would consider normal for myself.  My GI doesn't think it is from the pred, and my acupuncturist is skeptical of that as well.  Have any of the ladies here had this issue with pred before?  Or have ideas as to why this could be? 

Thank you in advance for any input!

Posted 7/20/2008 1:21 AM (GMT 0)
Hi there- As far as the taper, I would call your doctor. Everyone reacts differently. I tapered very slowly. I was also on 6mp and Remicade at the time of the taper so those helped also.

As far as the loss of period, since my flare in July 2006 and was loaded up with Prednisone, I have not had my period. After about a year, I went to my obyn for it and then to an endocrinologist. I had never been on birth control so they put me on it for 6 months, and for those 6 months only I got my period... They were hoping that the time on the birth control would jump-start my period, but I've been off of it for some time and nothing has happened, not even any spotting. My endocrinologist did lots of bloodwork and my Estrogen level was 12 (supposed to be in the hundreds). I did a 24 hr pee-test and that ruled out Cushings Syndrome and I also had a MRI done of the brain, which came out normal. Basically my pituitary gland just isn't producing enough estrogen. I hope that helps somewhat.
Posted 7/20/2008 10:13 PM (GMT 0)

Hi Supa

I totally agree with RobboUC.  You should taper in 1mg increments. I have been steroid dependent for  years and have tried coming off the pred a million times so I am almost an expert in it now!

I have tapered down to 2mg but it has taken an awful long time. When I was at 10mg, 1mg a month was the fastest I could go. And I could not have done it had it not been for the azathioprine. 

Yes, I also lost hair when tapering but it does grow back.  Lately, I have had incredible joint pain, itching skin, rash, weight loss, depression, acne, fatigue, insomnia, abdominal pains, loss of apetite...you name it - Ive suffered from it!  But, seeing my moonface SLOWLY going every day keeps me going. 

Definately start the predfoam enemas.

Good luck. You will get there in the end!

Posted 7/21/2008 3:41 AM (GMT 0)
Well, this happened a long, long, long time ago....when I first got sick. I was just 15 going on 16, just had my first period....got UC and after two weeks, a loss of 30 lbs and 6 pints of blood they diagnosed me and put me on prednisone. I stopped having my periods for a long time but I can't really remember how long. But after I tapered down, my menstrual cycle seemed to go back to normal.
Posted 7/21/2008 8:31 AM (GMT 0)
My specialist reluctantly suggested this last time on prednisone as a last effort before getting on a drug trial but that was very fast tapering compared to everyone here so ive decided to give it another very very slow go before i start getting into the long term pred-use territory... The thing is i have been told to go back on it to settle my current flare but havent yet...

The problem is i developed what i guess you would class as insomnia. Not sleeping till about 3am, getting maybe 3hours sleep then having very disturbed 'sleep-ins' for an hour or two more. I bombed out the last few weeks of my university semester as a result. Oddly though i havent had a problem sleeping at the high doses (60mg to about 15mg) but start getting very tired below 15mg. it became worse tapering each of the first 2times and the 3rd developed into insomnia. Consequencely im very apprehensive to let it get worse the next time.

Has anyone had this trouble when tapering prednisone?
Posted 7/21/2008 5:01 PM (GMT 0)
Thank you all for the responses. It is really helpful to hear from others about their experiences! And I would most definitely rather take this taper slowly than end up flaring and have to start all over again on a higher dose.

I will say that today, I seem to be feeling a bit better! And of course, as SOON as I post about my menstral cycles, I get my period-I started it last night.

My BM this morning was still a little softer than my usual, but improved, and I am not feeling so bloated and uncomfortable today either. That said, I am still thinking that I am going to hold steady at 15mg for an extra week rather than taper down to 12.5 on Thursday as I am scheduled to.

I can't thank you all enough again-ITA that the docs just don't seem to know that much about the side effects, and it is good to know that I am not the only one dealing with this entire rash of nasty symptoms. Though I hate that others are dealing with it too.

Snowkiter-I have had insomnia pretty badly during my time of pred, but as I am tapering off, that has gotten better for me. I am actually sleeping a good solid 5 hours at night now, which is a huge improvement for me! One thing that has helped me immensely, but I realize is not a viable option for everyone, is acupuncture. I see a WONDERFUL acupuncturist weekly, and she is focusing on things like helping me with my anxiety, mood swings, insomnia, etc. I definitely notice a difference when I don't make it. It helps that I found someone who has a daughter with UC, so she is particularly sensitive to what I am dealing with. I am very sorry to hear of your troubles, that isn't easy for anyone, and particularly rough when you are trying to deal with school as well. I hope you can find some relief!
Posted 7/21/2008 5:53 PM (GMT 0)
FYI - Many women notice bowel changes during the week or so leading up to their periods. This might explain the problems you were having. I'd recommend charting things (keeping a journal or calendar of bms) and see if things improve after your period.

Good luck! Welcome to Healingwell!
Posted 7/21/2008 6:18 PM (GMT 0)
Thank you for the tip, Dakotagirl! I do actually chart my cycles, so I will add info about my BMs to my charts as well to see if I see any patterns with that as well.

Ahhh...the joys of womanhood, huh? It can be confusing when you are wondering if your issues are the result of your period coming, the prednisone taper or if you are starting a flare or something. I guess there isn't a manual for all of this stuff, unfortunately!

Thank you for the welcome!
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