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Ugh..Am i ever going to get off the Pred??

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Posted 6/3/2008 9:17 PM (GMT 0)

So my doctors tapering me off pred. and i WAS down to 15mg ..taking that for about a week and a half. Im on the MTX shot once a week-25mg and because of that Im going once a week to get blood tests to monitor my liver. I went the Tuesday before last and one of the inflammation tests said that my inflammation went up from a 6 to a 27. Last Tuesday it was 27 and NOW this Tuesday it went from 27 to 31! My doctor just called a few minutes ago to inform me of this and he said to up my dose of Pred. to 15mg twice a day and then when I go in next Tuesday if my inflammation is still up theyre going to admit me and start me on an IV steriod. Since I have the D allll the time, he thinks the steriods are kinda just going right through me. Im not going to say im losing hope of ever getting rid of this extra weight and horrible acne or the pred. but it seems like every time i get below 20mg everything gets worse. Did/is anyone going through any of this? Advice PLEASE =[

  

Posted 6/4/2008 2:22 AM (GMT 0)
So sorry. I am sympathetic to your plight. My daughter is fighting a similar fight. She is down to 5mg, and experiencing nausea and a bit of D. We are not upping the level yet, and I hope they consider upping your other meds before putting you on just more Pred. My daughter is on 6mp, and 6 Asacols still. It you go back to an IV steroid you have to begin weening all over again, probably from 50 or so. On the other hand, if it is what works to stabilize your colon, you have to do what you have to do. Get to a very good doc who sees this daily. and keep reading on this site. You will learn of many options open to you.
Hang tough.
Posted 6/4/2008 3:40 PM (GMT 0)
wow your daughter sounds like my twin..moon face HORRIBLE acne gained weight, but im 16 so a little older. although im not scared of my future, im scared of what kind of problems im going to have when i get older from being on these meds. ive read on here that being on pred. for 4 months is considered long term use and ive already been on it for about three. it just seems like everytime i get a little worse my doctor steps up the pred dose and then when i get better he starts tapering down. its this never ending cycle. ive only been diagnosed with this for about 3 months and im still getting used to having it. a lot has changed, the way i eat, what i do, when i do it, its crazy and really hard. is your daughter getting homeschooled? or is she still going to school full time? i was homeschooled for the last half of the year and nxt yr im only going to go half a day. keep me updated on how your daughter is doing. hope all is well and good luck with everything.
God Bless
Posted 6/4/2008 7:04 PM (GMT 0)
I couldn't get off Prednisone. My doctor started me on Imuran and when we finally got the dosing correct, it seems to be working and I slowly got off the Prednisone (after nearly a year.) Don't worry, you have lots of options yet. It seems that often times the first flare can be the worse. Especially finding what treatment works for you.
Posted 6/6/2008 3:03 AM (GMT 0)
I'm soooo sorry that you are having to go thur this...It has been about 3 years now that i went through something very similar. I could not for the life of me figure what was going on with my body. I was in and out of the hospital over and over again...2 weeks at a time. Doc had me on high dose of steriods by IV in the hospital and would send me home on pretty high doses via Prednisone. As i would start to get lower we would have to go right back up. I have finally gotten better as over the past 2 months is the first time i have had to deal with the stuff in over a year. I still have a couple of weeks before i can get off the stuff, but it seems like my body responds better and quicker now. After the first really long period I had a hard time with the "fat face", knees, feet, and acne all over my face, back, and chest. It was no fun, but most of it finally went away. I ended up with some little spots on my chest that seem to surface when they want and that is no fun but worth it. In the beginning it was difficult to get it all under control, but as time passes it seems to go easier...mostly because I am used to it I guess. Similar to the person before me I started imuno drugs (low dose) and that is when i finally started to see some relief. Keep up the good fight and I wish you the best!
Posted 6/6/2008 7:56 PM (GMT 0)
Like sasquatch said, you have a number of options yet. Many of us here
have gone thru the terrible steroid days, I had to deal with it for a long time
until I found an antiinflammatory agent that worked for me. I wish you the
best, and hopefully your GI can find the right combo for yourself. Keep
reading the posts on this site, as they are very helpful, and it shows you
are not alone.

--------------------------------------------------------

yuckygut

diagnosed 1998

now off prednisone and colazal

drink 1 Haldi daily
Posted 6/6/2008 10:01 PM (GMT 0)

Katrina, I feel so sorry for your struggles.  I was diagnosed about 3 months ago also.  I had severe inflammation and now it is gone.  The meds I take are asacol and someimes canasa along with cymbalta.  Did your doctor ever try asacol?  It worked so good for me.  I am still learning about all of this.  I will pray that you will be well and off steroids soon.  Also, maybe you could get another doctor opinion.  Hang in there.

Lori (Bellski)

Posted 6/8/2008 2:43 AM (GMT 0)
Hey Katrina!

So wow you are totally my twin sister! I was diagnosed October 2005 when I was 16 (I'm 19 now) and I was on 40mg of Prednisone for 1 WHOLE YEAR!!!! It sucked sooooo bad. Because of Prednisone I gained 50 pounds (and I was not thin to begin with) had the moonface, irritability, acne, increased appetite, and depression. Same as you my GI doc tried to taper me off every so often when my symptoms would start to lighten up but I could never get lower than 20mg without going into a full blown flare again. I was also doing Canasa Suppositories and homeopathic vitamin supplements as well. I even tried VSL #5 probiotics mixed into applesauce. Boy was that gross. Nothing was working and I had to finish second semester of my junior year through a home hospital school program with a tutor. It sucked majorly. I literally was alone at home for about 8 months during my first year of diagnosis. I couldn't leave the house with constant D and my friends were grossed out and thought I was a party pooper-literally. To top it all off I got C-Diff on top of a flare and boy was that fun. I wasn't respond to C-Diff antibiodics either. I was in the hospital for a week. Anyway, eventually my GI doc got a clue and saw that I had a pretty severe case of left sided UC so he suggested I try Remicade. It's an IV infusion once every weeks that I started August of 2006 and it is a MIRACLE drug!!! I've been in "remission" ever since. I have mini flares every once in a while but nothing compared to my first year with UC. I finished Senior year of high school with highest honors and just finished my first year of college with no problems. Remicade is amazing. I'll admit I'm a little afraid of what being on Remicade for the rest of my life will do to my body as far as side effects go, but I can't think of that because nothing is worth more than getting your life back. I'm so sorry you're dealing with this and just want you to know that things may suck now, but it does get better! You can still be a relatively normal teenage girl. You just have to find your right combo of drugs (ask your doc about Remicade), understand your body and how UC affects you, and keep positive.

Good Luck Girl! We're all in this together!

Ashley

_______________________________________________________________________________________

Female, Age, 19, DX w/ Severe Left sided UC October 2005
Present Meds: Remicade Infusion every 8 weeks since August 2006

Past Meds: Canasa Sups, 40 mg Prednisone Daily for 1 year, Miralax Daily, Ginger Supplements
Posted 6/9/2008 1:27 AM (GMT 0)
I am glad so many nice people replied to you. You asked about my daughter's schooling. She made it through the year! Decent grades too. You can only do what your body allows though, so don't stress. Life is a marathon, not a sprint. If school takes a little longer to finish, so be it. My L got lucky that her long hospital stay was over spring break, and then she had a lot of "down time" to study, as the friends got a little sparse. Sounds like a good plan for you to take it slow next year.
Tonight she is walking in Chicago at the Crohns and Colitis Foundation Walk-a-Thon. I hope there are plenty of port a pottys!
Her friends have been pretty supportive. She tells them of the reason that she can't eat what they eat, or wear what they wear(acne cover-ups) or even have the energy they have to walk long distances. She found that they were more sympathetic when she was honest. She came up with a standard explanation of
"what it is" so that it was not embarrassing for her or for them. A tip for the day....
Keep in touch, hang in there!
K
Posted 6/9/2008 11:29 AM (GMT 0)
Ladies and Gentlemen,
Please have them monitor your heart. I was pulled off Pred after it weakened my heart. I had to keep taking larger and larger doses to stop the bleeding. Plus the 40 pound water weight gain did not help anything either. That is what they think was wrong with my heart and they are hoping it recovers like the rest of me. The only thing it limits me in is being outside in the heat (OH DARN! :) ). I workout but do not do strenuious exercise. So please be very careful.
Posted 6/9/2008 8:19 PM (GMT 0)
So sorry to hear about your frustrating struggle with steroids! I recently had a similar struggle - would start to taper down, and have to go right back up again. I did eventually agree to hospitalization for the IV steroids on 4/1/08 - I had fought it because I had a new baby at home, and was devastated leaving her, but was eventually so sick that I just had to do it. As hard as it was, it did help me to turn the corner, and am now FINALLY down to 5 mg for only 2 more days (hopefully!). Along with the steroids, I really feel that the Canasa suppositories helped a lot - in the hospital I used 2 a day. Good luck, and hang in there!
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