Anyone been on pred for an extended period of time?

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GLOVE
Regular Member


Date Joined Jul 2009
Total Posts : 321
   Posted 9/3/2009 11:28 AM (GMT -6)   
I started on prednisone in May and tapered down at the end of June. Stayed off for about a month and started back on again. I tapered down about 10 days ago and my symptoms are returning. I am thinking I need to go back on it again. I am having cramping, nightsweats and the D has started. I am nervous to be on pred for this long. Has anyone been on it for a long time? If so, what side effects hve you had?
 
My doctor spoke to me about starting Remicade if I don't go into remission soon. I am nervous about that but I am accepting the fact that Remicade maybe the next step. I will have to see what the cost of Remicade would be as I have lost my job. Thankgoodness I have insurance through my hubby...but it has very high deductible and copays.
 
 
UC since 2002- had remission for 6 years
recent flare 06/09- severe flare
Currently trying lialda, multivitamin, probiotics, fish oil, iron supplement
 tapered off prednisone 8/21/09
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/3/2009 11:31 AM (GMT -6)   
It sounds as if you are prednisone dependent. I was on varying doses of pred for 2.5 years. I don't recommend it but back then the last drug to use for UC was 6MP. You might want to contact your doctor about other options to keep you off prednisone.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5962
   Posted 9/3/2009 11:37 AM (GMT -6)   
     I've had UC for eleven years.  Yes, I was on prednisone...too often.   Years ago the prednisone would work and I would be able to taper 10 mgm per week and get off the stuff within two months.  For the past three years, not so lucky.  I had a severe flare last year, hospitalized for ten days and was on and off prednisone for the better part of seven months.  I am also on 6MP.  Another flare started this past May.  I started the prednisone in June and am finally down to 5 mgm.  Looks like this flare is finally burning itself out.  The doctor hates me being on the stuff.  I already have osteoporosis,  high blood pressure and with this last round...blood sugar skyrocketed.  Good thing I knew the symptoms of diabetes before I went into a coma.  Was able to control it by strict diet.  I check my blood glucose morning and night now instead of four times a day and it is fine..whew.  Both parents were diabetics and mom was insulin dependent with major complications at the end of her life from diabetes.
     I am not a candidate for Remicade and from what I have read about it...really wouldn't want to be on it, although a lot of people are helped but just as many eventually build up immunity to it too and have some bad reactions.  Ask your doctor about Imuran and 6MP first.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Slowly coming out of flare.  Meds: Colazal (6 per day), prednisone 10 mgm and tapering weekly, Cort enema nightly, Canasa in morning, Benicar 20 mg for BP, flaxseed oil 3 x a day, fishoil 2 x a day, probiotic 3 x a day, calcium with D 1x a day and multivitamin.
Doctor had me on 100 mgm of 6MP which drastically lowered my white count.  Now off the 6MP pending results of repeat white count. UGH.


wrxBRAH
Regular Member


Date Joined Mar 2008
Total Posts : 312
   Posted 9/3/2009 11:43 AM (GMT -6)   
Ive been on pred for 5 years with varying doses as well. The side effects Ive noticed are moonface, irritability, difficulty sleeping, depression, anxiety and back acne. Im scared to even get a bone density test done. I dont recommend staying on it long if you can help it.
Male 29yrs old Bay Area, California

Currently taking:
Prednisone - 30 25mg
Asacol - 4800mg
Imuran - 100mg


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 9/3/2009 12:34 PM (GMT -6)   
GLOVE - how fast are you tapering? Maybe you are tapering too quickly and not completely healed so you flare again soon after stopping the pred. I had to taper over a three month period but have not had to go back on it again in over a year...the slow taper was frustrating but well worth it...
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day
Cort-enema nightly
Canasa in the morning
Probiotics Daily
 


GLOVE
Regular Member


Date Joined Jul 2009
Total Posts : 321
   Posted 9/3/2009 1:03 PM (GMT -6)   
I started on 30mg for 7 days and tapered down 5mg every five days. I was feeling really great until today. I just put a call into the GI. I am sure he will put me back on pred for a period but I know he really wants me to start Remicade. Maybe if I go back on for a while I can nip it and I won't need to go on Remicade quite yet.

Thanks for your reponses as I am very nervous about long term effect of prednisone. The short term effects don't bother me too much ..other than the ankle swelling and insomnia.
UC since 2002- had remission for 6 years
recent flare 05/09- severe flare- pancolitis
Currently trying lialda and not sure if I like it, multivitamin, probiotics, fish oil, iron supplement
 tapered off prednisone 8/21/09
 


wrxBRAH
Regular Member


Date Joined Mar 2008
Total Posts : 312
   Posted 9/3/2009 1:19 PM (GMT -6)   
Fast tapers never worked for me. I have to spend atleast 2-3 weeks to taper down 5mg to know for sure I can do it otherwise Ive had multiple times where I tapered down 3 times and the UC flare came on full blast. I find 5-10mg really hard to taper off of without bringing on a flare.
Male 29yrs old Bay Area, California

Currently taking:
Prednisone - 30 25mg
Asacol - 4800mg
Imuran - 100mg


songlady
Veteran Member


Date Joined Aug 2009
Total Posts : 3646
   Posted 9/3/2009 1:27 PM (GMT -6)   
Gosh, let me reach back into my memory banks...
I was put on 60 mg or pred in October, 1986. Got little response (except moonface) so went into hospital for a week of IV steroids in December..... got out, back on 60. I can't remember if I tapers much, maybe to 40? but then ended up back in the hosp. for two weeks in April, more IV steroids.
I was discharged on 60 mg again....... (so that's 6 months on high doses....) and tapered and tapered. I got off after 2 years of the stuff.
I had to go realllllllly slowly - 5 mg every 7-10 days, and then 2.5 mg/day at the end. I finally got off completely by meditating and doing visualization, picturing my adrenal gland kicking in.
I think very, very slow tapering is the best way to go if you've been on it any length of time.

I have avoided going back on it since then! (Just truckloads of Asacol and sometimes Cortenemas.) So, 20 years later... my bone density is fine. I do have some arthritis issues, and hopefully will, at some point, get the doctor's best guess as to whether some of this could be related to all that pred... but my mom has the same knee/hip issues and has never had UC or been on pred.

In 86/87 there weren't a whole lot of other options. Even now often pred can get someone into remission quicker and better than a lot of other meds.....
Diagnosed UP 1983, Azulphidine
Diagnosed UC 1986 Prednisone almost 2 years
Asacol - 16 pills a day
Metamucil - 2 doses a day
Cortenemas or Rowasa from time to time
VSL#3, Ultimate Flora Critical Care
Flax Seed Oil
Bee propolis as of 9/2
Canasa as needed


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 9/3/2009 2:58 PM (GMT -6)   
GLOVE - that actually sounds like a quick taper to me...might be causing you to re-flare. I was on 30mg for 10 days, 25 for 10, 20 for 10, 5 for 10 and then 5 every other day for 10 days...that seemed to work for me...but as I said I tapered down from 30 to 25 before I was ready and had to go back up to 30 for a while...which made me be on pred for a longer than planned...all in all I think I was probably on 30mg for closer to 15- 20 days total...took about three months to be able to stop pred completely...I did not get dependant on it though, had minimal side-effects and have (so far) not had to use oral pred again. It was what I really needed to kick start remission...I thought I might have to take it again recently but thank goodness I think that the cort enemas have finally put me back in remission! Yea!
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day
Cort-enema nightly
Canasa in the morning
Probiotics Daily
 


GLOVE
Regular Member


Date Joined Jul 2009
Total Posts : 321
   Posted 9/4/2009 10:13 AM (GMT -6)   
Ok so my GI put me back on prednisone for a while with a slower taper. He said that he really suggests I consider Remicade. Not sure I am 100% ready to go that route.
Thanks to all for your replies.
UC since 2002- had remission for 6 years
recent flare 05/09- severe flare- pancolitis
Tried Lialda for 5 days and don't like it.Made me nauseous and had headaches, back on colozal, multivitamin, probiotics, fish oil, iron supplement
 tapered off prednisone 8/21/09
mildly flaring again and back on 20mg prednisone 09/03/09


lovemyboys09
Regular Member


Date Joined Apr 2009
Total Posts : 249
   Posted 9/4/2009 10:46 AM (GMT -6)   
I have been on prednisone for 5 months now and am trying to taper....got down to 5 mg at one point and all symptoms came back. THen moved me back up to 10 and didn't work so moved me back up to 15 and that helped somewhat. Now they want me to taper again and have severe joint pain....not good for a 26 year old mommy of 2 little boys (ages 1 and 5) So I am slowly decreasing again....maybe this time will be my lucky time to get of fof it!
Colonoscopy on 4/23-diagnosed with severe ulcerative proctitus
 
Meds:
proctofoam
prednisone (15 mg)- staying at that for this minute
Vitamin D
Calcium
Discussing Remicade
 
Azathioprine (50 mg)   serum sickness reaction 
pentasa, canasa, asacol  didn't work
 
 
 
 
 
 
 


AP.DOM.Intern
New Member


Date Joined Sep 2009
Total Posts : 1
   Posted 9/4/2009 2:57 PM (GMT -6)   
Dx: 1994
Had one hospitalization while living in NY, almost 9 years prior to first flare up in Florida.
Relocated to Florida 6 years ago. Was hospitalized three time's the first three years I have lived here.
Damp climate and heat.
Stress

Prescribed:
canasa suppositions 1x in the am
Hydrocortosone enena 1x eve
asacol 400 mg 6 tablest 2x per day
fish oil x3 daily
prednisone...started at 10mg went up to 283mg in the hospital which is a crazy amount of prednisone.
Finally to stop the bleeding I had Remicade infusions which took about 1-2 weeks to get me back on the road to remission.
Remicade infusion takes approx. 3 1/2 to 4 hours through IV. It is a combination of mouse and human antibodies to stop the bleeding. Got chemo type side effects. Nausea and vomiting the next day. The day of I just felt very tired. Had two additional tx of Remicade several weeks later. Kicked me into remission.

After three hospital visits lasting three weeks , three years in a row....I went and saw a AP DOM. Acupuncture Physician /Dr of Oriental Medicine. Within 5 weeks I was down to one medication out of the 15 I was taking! I have remained on Asacol tapering the dose as needed.
I have been getting bi monthly acupuncture treatments ever since and have remained in remission, ( in great health...bike 23 miles 5x per week)until recently I accidentally ate expired mayonnaise that I had just purchased at the grocery store which altered the state of my intestines....and I am currently having a mild flare up. :(
Bumped up the acupuncture treatments to bi weekly
hydyocortisone enema nightly for about 5 nights
Started canasa suppositories today
Next week I will try raw herbs which I will cook, strain and drink. First time trying it, so I will post how I respond to herbal treatment in conjunction with western therapy.
Currently I have some urgency to have a bowel movement.
Diarrhea in the morning without blood
Afternoon mucus w/ some bleeding.
A sinking feeling in the rectum area in the afternoon and evening
I cooked organic jasmine rice ( made very soupy...lots of liquid ) yesterday with some chicken for dinner, very bland diet.
No caffeine
No Eggs
No Dairy
Cook the rice and then drink the rice water. ( as much as you can) It is very good to stop the diarrhea.

Be very careful if you are hospitalized.! I was never given support stockings, lifts or encouraged to walk while in the hospital. The only time I got up daily was to shower and the nurses hated that as I needed to have everything I was hooked up to unplugged. I ended up surviving a pulmonary embolism about two weeks after I got home. I had been to my primary care doctor seven times complaining of leg pain and they never made the connection. I was LUCKY...but I ended up back in the hospital and told to get my personal affairs in order as the next 72 hours were crucial. I had three blood clots in my left leg and if they traveled ( large) it could be fatal. Had to take coumadin for a year! Currently off...as I am an not a clotter, HOWEVER having UC puts you at greater RISK of Blood Clots!!!!!

I will post my reactions to the herbs I will start next week. If we can control our symptoms and remain in remission with out taking so many prescription drugs that would be WONDERFUL. I have been successful.

I am confident that we can stay in remission for longer lengths of time and possibly never get a flare up again. It will take some trails however I remain confident.

Post Edited By Moderator (Judilyn) : 9/4/2009 3:11:36 PM (GMT-6)


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/4/2009 3:14 PM (GMT -6)   
Members, please remember that what works for one may not work for the next person. We do not advocate stopping your prescribed medications as this most often leads to increased flares.

AP, please use caution when posting. Here we do not post as healthcare practitioners or give professional advice, regardless of the philosphy we follow. We post only as peers with UC. Thanks!
Judy
 Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001. Flared for 5 years, finally in remission with Remicade since March 2006. Colazal,  Remicade, Nature's Way Primadophilus Reuteri.
Avascular necrosis in both shoulders is  my "forever" gift from steroids.
Chronic joint/connective tissue/muscle pain; TKR 05/09 
"My life is an ongoing medical adventure"
 


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 9/4/2009 4:14 PM (GMT -6)   
Ive been on it since January. Side effects have included high blood sugar, developing Glaucoma, night sweats, irritability, weight gain, swelling, bruising. That's what I can think of right now but I think there are more
26 year old female
Diagnosed with unspecified UC 11/08 by flex. sig. as I was pregnant at the time and did not want to be put under for a colonoscopy
Breastfeeding my baby boy (born 4/8/09)
20mg Prednisone, 2 Asacol 3x/day, Prenatal vitamin, and Ferrous Sulfate 2x/day
3 infusions of Remicade with no success
8/09 colonoscopy shows that the whole colon is affected
Waiting on pathology report to make sure I don't have Crohn's before proceeding with surgery

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