Advice on prednisone

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mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/16/2009 3:02 PM (GMT -6)   
I do not like this drug and I have been on it for a very long time. I was wondering what anyone else's thoughts/experience with it was.
I got the moon face, I gained back alot of weight after dropping it and the doc says this is due to the pred.
I am taking Cal-mag supplements to a) help prevent ostio and b) help me sleep because of the insomnia
I've been on prednisone for about 8 months now and I have heard lots of people say the treatment is only supposed to be 2-4 months and 6 at the most.
I really really want off of it.
Help?
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/16/2009 3:06 PM (GMT -6)   
And I agree with you. I think you need to stress this with your GI. You need to find a way to remain in remission but without prednisone. Have you been on Imuran for six months? If not you might need to stay on prednisone until the Imuran kicks in. However, if you have been on it for six months and you are still unable to successfully wean of prednisone it would appear that the Imuran is not working. If that's the case, it might be an ideal time to talk about the next step in treatment.

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


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/16/2009 3:09 PM (GMT -6)   
I've been on the imuran for 3 months just about. I don't know if it's doing anything which is annoying...
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


ozziek
Regular Member


Date Joined Jan 2009
Total Posts : 20
   Posted 1/16/2009 3:15 PM (GMT -6)   
Im with you on this one... I have been on prednisone for 8 months as well and can't wait to get off of it. Everytime my doctor tries to ween me off I get down to 20mg a day and then I flare right back up again. I am allergic to imuran, so I cant even use it to help me ween of pred either. Although I have endured many of the unpleasant side effects of the drug... I do feel that its benefits outweigh them.
I know it seems like a long and bumpy road with no end in sight... but keep your chin up! We'll get off of 'em one day.. maybe not tomorrow, or next week... but we will :)
good luck to you!

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/16/2009 3:15 PM (GMT -6)   
Hi,
     I've had ulcerative proctitis for over ten years and been on and off the pred more times than I care to count.  Last year was bad.  I was hospitalized for ten days and on the prednisone seven months before reaching remission.  Due to the prednisone, I have osteoporosis.  My dexascan showed my reading to be -3.6.  Doc said that was pretty bad.  Four years ago I fell on my tush and suffered a compressed fracture of the lumbar spine.  That in itself sent up a red flag so says my family doctor.  He and my GI doctor are both pushing me to take something for the osteoporosis but I am on so much other meds that I am putting it off.  I tried Fosamax but that gave me terrible indigestion, so did the Actonel.  I refuse Boniva, heard bad reports from a few people that were on it and there is something new out, some injection of some sort.  Forget it!  Bad enough I am on the 6MP and my white count is down to 2.4.  I take calcium supplements.  For the meantime that is going to have to suffice.
     How is your blood pressure?  Prednisone raises mine to alarming limits.  When I was in the hospital it was 210/111 and that was while I was on three different blood pressure meds.  When I came home I called a cardiologist and he put me on water pills.  That seemed to keep the pressure in check.  Prednisone makes your body retain fluid.  Might want to ask your doctor about that.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/16/2009 3:22 PM (GMT -6)   
My blood pressure seems to be ok. I went in for a pap in Dec. and they do your blood pressure as part of the physical and she didn't say it was strange or anything.
I got an allergic reaction to the 5ASA's...they give me pancreatitus...that was not fun.
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/16/2009 3:39 PM (GMT -6)   
     When I was admitted to the hospital they did a CT scan and it showed inflammation throughout the colon.  The doctor took me off the 6MP because my amylase and lipase results were extremely high.  He thought the 6MP had affected my pancreas.  However, by the end of the week the levels had returned to normal and he placed me back on the 6MP when I went to his office for the follow up visit.  He just makes sure I get tested every other month for the pancreatic enzyme levels to make sure they stay within normal limits.  I just wonder if it wasn't a fluke in the lab.  Sometimes that does happen.  The colonoscopy they did in the hospital showed ulcerations in the rectum only.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/16/2009 4:02 PM (GMT -6)   
I was throwing up bile and couldn't eat anything and I had really bad pain in my side. My lipase numbers were really really high too. Definatly not wanting to repeat that.
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/16/2009 5:11 PM (GMT -6)   
Please remember that the bleeding can come back when you reduce your medication, because it takes time for the body to adjust to the lower amount of Prednisone and bump up its production of Cortisol.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 1/16/2009 6:18 PM (GMT -6)   
mythmoon, I was on Pred for two years. Didn't think I'd ever be able to get off of it. I felt like I had PMS for most of the two years -- short fused, trouble sleeping, muscle aches, my face got round, but I did manage to keep my weight gain under 25 lbs, I have eight more pounds to go to get back to a good weight for me. It was tough though because I was sooooo hungry all the time. I'd have a trucker's style breakfast and within 30 minutes my stomach would be growling. It was awful.

Remicade was the solution for me, I have been in remission since last summer -- it took a year of infusions to achieve a good remission, but there was enough improvement after a few infusions to keep trying, finally I was able to get off the Pred and remain in remission. I was ready for surgery if it didn't get to working, and I still will probably have the surgery at some point. I was in a flare for over two years -- I can't go through that again. If I flare again I'll probably decide on surgery pretty quickly.

Has your GI discussed Remicade with you? If you can't get your UC under control with other drugs you're a good candidate and should get insurance approval. If not, have you looked into the surgery? Most people who have it seem to only regret not having done it sooner.

Meesh
46 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!
12 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08; 5/24/08; 7/5/08; 8/15/08, 9/26/08; 11/08/08; 12/20/98; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D; Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 1/16/2009 8:34 PM (GMT -6)   
When I was first diagnosed my flare was so out of control they practically filled me full of Asacol and Prednisone...I was on the normal dose of Asacol but 40mg of Prednisone. My initial flare started just a month before we learned we were pregnant too...so, I was pregnant with the 40mg...FUN.

I tried going down on the Prednisone three times. Once I was practically completely off, but then I quit nursing and "poof!" the flare was back full force...in fact, I've never been in remission. So, back to 40mg I went...I tried going down more recently and struggled to get to 10mg and then went back up to 20mg. I refuse to go back to the 40mg b/c I also take Remicade, and my treatments are now every 4 weeks. When I started the Remicade with the 40mg Prednisone my body could not handle infection, so I came down with a MRSA staph infection and two abscesses that were removed leaving open wounds. A little over a month ago I got another staph infection that resulted in an abscess removal and it just finished healing a few days ago.

We have decided to suffer through with the 20mg until I can have the surgery.

I too have a beautiful moon face...we really should come up with a better term...a Quasimoto hump on my upper back, huge jointed areas and a fat ass. I have gained an average of 30lbs and I do not like the way I look. Uhg. My husband is so supportive...all this happened shortly after we were married, so what a beautiful bride I became! : )

Prednisone is the devil's advocate. It does help maintain a flare for the most part, but it's also easy to become dependent on it. If you are unable to decrease your dose with your other medications, I feel those need to be altered/adjusted.

I wish you the best of luck...I understand how frustrating it is to have your hopes up that the next treatment or attempt will work...but then soon afterward learn that it's not doing the trick. I've been battling some serious sadness lately because nothing is really working.

But oh well...colon cancer runs very strong in my family, so not only will I be curing this disease, but greatly lessening my chance of getting cancer! : )

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
Paxil-40mg  Prilosec-bid  Multivitamin  Moderate/Severe Pancolitis
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/18/2009 12:05 AM (GMT -6)   
One of them (humira and remicade) is covered by my dad's insurance I just don't know which one it is. (can't remember at the moment)
I am hoping to never ever have surgery. I will try everything else on the face of the planet first before that. Just my own personal thing.
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


Vibrant2
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 1/18/2009 1:51 PM (GMT -6)   
I was on Prednisone for years when I was younger and had all the symptoms from it i.e. moonface, acne, etc. The Prednisone was just a temporary fix. As soon as I would try to go off of it, I got worse. I was also on Imuran for years and then the doctor decided to tell me that it causes Leukemia. Then, they wanted to do surgery. I had enough, walked away from the meds and the surgery and decided to work on healing myself. Now, I'm healthier than I've ever been.
Contact me via e-mail or MSN.


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 1/18/2009 4:56 PM (GMT -6)   
     Vibrant, you are just lucky you are feeling well.  Most of us in here cannot walk away from our meds.   I certainly hate taking prednisone as it raises my blood pressure to alarming limits and it gave me osteoporosis to boot.  However, it is the only drug which helps me achieve remission.  Your doctor should not have told you that Imuran or 6MP causes leukemia.  It does not.  They keep a check on your blood levels to make sure they don't take a drastic nose dive.  My white count is 2.4 which is kinda low but my doctor isn't alarmed because he said he knows the 6MP is working.  I also went to a gastric surgeon who is listed as one of the top notch GI surgeons in the US and he told me that in all his years of practice he only came across 1 patient who developed lymphoma while on 6MP and who is to say that patient wouldn't have developed the lymphoma even if not on the 6MP.  I know of seven people in this area (south Jersey, cancer capitol of the US I think) and NONE of them were on immuno-suppressants at the time they came down with their disease.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


Vibrant2
New Member


Date Joined Jan 2009
Total Posts : 11
   Posted 1/18/2009 5:01 PM (GMT -6)   
No, I wasn't lucky. It wasn't as simple as that. I had to work hard at it and tried many different things. By the way, the doctor that told me that Imuran causes Leukemia was the Chief of Gastroenterology at Mass. General Hospital, so I think he knew what he was talking about.
I have 40 years of personal experience with Ulcerative Colitis.
Contact me via e-mail or MSN. Look at my profile for contact info.


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/18/2009 9:59 PM (GMT -6)   
It's easy to know what the side effects are. All anyone has to do if they want to know the side effects is to do a search on Google. I won't list them here. It's bad enough not having any alternative but to take the medication or get surgery.

Vibrant2,

I understand the feeling. Diet, probiotics, vitamins, and fecal transplantation work so well for me. They work so much better than anti-inflammatory medications, which have some serious side effects. But then I have Colitis from taking too many antibiotics, from being a chocoholic, and from drinking too many beverages with HFCS in them. So I am a good candidate for alternative treatments. Not everyone is.

I hope I don't sound brash. We welcome your personal experiences with Colitis. That's what this forum is for.
Joy - 47 yrs and counting
Diagnosed w/ UC Dec 06
Currently in remission

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose, artificial sweeteners

Post Edited (subdued) : 1/18/2009 8:05:49 PM (GMT-7)


Boxermom2
Veteran Member


Date Joined Dec 2008
Total Posts : 601
   Posted 1/18/2009 10:18 PM (GMT -6)   
I am currently having a mild flare for a change.  Started on 40mg of pred around Dec 23rd.  It kicked in right away and after two weeks I started coming down by 5 every week.  I just recently hit the 25mg mark and the pain is starting again as soon as I eat.  I am back to 35mg now.  I can't stand it.  I just can't take it anymore.  My moon face is now breaking out, I can't sleep, heartburn and my legs bother me.  They feel heavy like I have to remind myself to move them.  From all the previous use I have osteoporisis.  Will start the Rowasa tonight to see if it nips it in the bud.  I just want to be off the Prednisone.

mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/19/2009 10:59 AM (GMT -6)   
Well I get to see what my GI says tomorrow and if she won't listen I guess I'm shopping for a new GI...any suggestions on how to change doctors?
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 1/19/2009 11:15 AM (GMT -6)   
 
 
Ahh Prednisone, the best and worst drug there is out there. 
 
I have been on it since early October and tend to respond pretty well to it but for some reason this time I got down to 5 mg and started to flare again.  Very frustrating.  I called my Gastro guy and he put me on 50 mg of Azathioprine daily which seems to have helped.  I'm about 4 days away from getting of the Prednisone all together and am feeling 99%. 
 
I haven't actually had a dicussion with my doctor about the Azathioprine (all this has been done over the phone) but so far I haven't had any notable side effects.  It looks a little scary on paper and I'll admit I was a little freaked out when the pharmarcist dropped everything and asked what I taking it for, but so far the results by far outweigh potential side effects.
 
Ask your doctor about it - and again I haven't had a lengthy discussion about it with my doctor but so far it seem to have helped. 
 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 2 pills/3 times a day. 
Flaring and back on Prednisone.  Big sigh . . . . . .


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/19/2009 11:55 AM (GMT -6)   
Aziathioprine is Imuran, which I am on at the moment as well.
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps


Howright
Regular Member


Date Joined Oct 2008
Total Posts : 86
   Posted 1/19/2009 12:08 PM (GMT -6)   

Thanks Mythmoon.  Now if someone could tell me what 6MP is I'd be all set.  blush

 


 
Diagnosed January 07 - but realize I've been living with minor flare-ups for 10+ years. 
 
Asacol 2 pills/3 times a day. 
Flaring and back on Prednisone.  Big sigh . . . . . .


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 1/19/2009 12:28 PM (GMT -6)   
I was on steroids (cortisone first, then prednisone) for about two years solid and then on and off for about ten years. I was 16 when I started, and that was back in the dark ages of 1962 thru 1974. At first I was on 40 mgs but then I tapered, went up, tapered....same as everyone. There were not many other drugs for UC back then. If there were my doctors did not know them. I did not start Azulfidine until about 1977. When I started the steroids, I got the moonface and the appetite increase. I swear I could eat an entire Angel Food cake at one time. But I had lost 30 lbs in the first two weeks when UC hit me (at the speed of a Mack truck barreling down a highway). I went from perfectly fine to so sick in 24 hours.

Now, forty-seven years later, I have some residual effects. I have joints (ankles and wrists) that look like they had breaks though I have never had a broken bone. I got stretch marks on my breasts, and face, that showed up in my early twenties though I have never been pregnant. But I do NOT have osteo problems. At 63 my doctor is pleased with my bone scans and he feels my daily walking routine keeps my bones strong. My UC is as mild as it has ever been....so unlike those who get the disease when older, I got it at 15 and my worst years were from 15 through 40. I definitely saw a decrease in symptoms after menopause. Interestingly I got UC one month after my first menstrual period and I started getting better after menopause. I never could get pregnant and wonder if it had to do with massive doses of prednisone. No one seems to really have answers for me. But I am glad to have gone so long with this disease, still able to live a relatively normal life; go to college, work for forty years and retire healthy enough to enjoy some leisure time. I get a colonoscopy yearly and so far no signs of cancer (seemingly risk increases every decade). I still get mild flare but they do not last long.

I do hope sincerely that more and better meds or stem cells become available to help people with IBD. I do think those of us who live with this disease deserve a chance to be free of it. Sadly it has taken years for the public to even be aware of this disease and I feel those of is burdened with it have suffered alone and without much sympathy. I am thrilled this bb is here and we have each other. I am also thrilled that young people with the disease are being supported now more than before.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 1/19/2009 12:45 PM (GMT -6)   
I was on Prednisone almost continuously for a year. Since I couldn't get off the Pred, my GI switched me to Entocort, which (supposedly) isn't absorbed systemically. After three years of Entocort, I had the moon face and weight gain, the mood swings, the joint pains. I also had type II diabetes, brittle bones and osteonecrosis (avascular necrosis) in my right shoulder.

Only you can decide if the benefits of steroids outweigh the side effects, but be aware that weight gain, sleeplessness, mood swings and weight gain are the mild side effects. From there it gets much worse.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 1/19/2009 3:28 PM (GMT -6)   
I know that pred is toxic in various ways even when on lower doses, but it was a joy for me fairly recently, to get below 15 .... at 12.5 and below I still have trouble sleeping but the joint stiffness and feeling of being all bloated disappeared. If I can just get below 10 I will finally start to get rid of the remaining moonface too. And below 7.5 I never noticed any effect of pred other than as a flare preventer. (Even going from 2.5 to say 1.5 mg could cause me to start flaring in the past.) In my case, if I can't get off it altogether I will go for surgery, but that's because I can't take this garbage anymore.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


mythmoon
Regular Member


Date Joined Jan 2009
Total Posts : 135
   Posted 1/19/2009 9:13 PM (GMT -6)   
Well I've only been dealing with this for about 2 years. I'm not quite ready for them to chop me open yet. I'll try the elemental diet first...has anyone done that before?
Imuran 150 mgs/day
Prednisone 15 mgs/day
Diagnosed UC Sept. 2007
Cal-Mag and Iron supps

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