For those on Long Term Prednisone (4+months)

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suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 6/30/2009 11:43 AM (GMT -6)   
There was some discussion in the past couple of days in regard to staying on prednisone if it works. The following link describes the potential horrors of staying on prednisone long term (more than 4 months). I know many of you feel prednisone is a blessing but please take the time to read through these stories of UC patients and the damage prednisone has caused. Yes, it can be a lifesaver but should only be used in the short term. Anyone who is steroid dependent should talk with their GI about other options.

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/1661015192
 
** Sue; I just made the link active

Sue

Post Edited By Moderator (Lonielane) : 7/1/2009 3:29:01 PM (GMT-6)


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 6/30/2009 11:50 AM (GMT -6)   
Thanks for posting that. I don't care if I get worse when tapering this time, I have already decided I am NOT staying on Prednisone. Surgery sounds better to me than staying on dangerous medications forever.
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)
20 mg Prednisone AM, 15 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success


blueclassring
Regular Member


Date Joined Feb 2007
Total Posts : 385
   Posted 6/30/2009 11:51 AM (GMT -6)   
No long steroids cause more problems than they solve.
Pharmacist as of 6/12/2009.
Diagnosed 8/99. Suffered for almost 10 years. I am currently on the Specific Carbohydrate Diet and am nearing remission. I feel fantastic! I have lossed so many years to this disease.

MED-FREE!!!

Doc wanted to put me on 6-mp or Remicade, but I refused to take the medications! Currently on the Specific Carbohydrate Diet.  I'm in remission and life is like it always should have been.


qwerty1
Regular Member


Date Joined Feb 2009
Total Posts : 402
   Posted 6/30/2009 12:00 PM (GMT -6)   
Hmm I've been on steroids for 6 months now...and still on them while we are waiting to see if the Azathioprine is going to work or not. I'm steroid dependant so coming off them is not an option without any other medication taking its place.
22 year old female, from the UK. Diagnosed with Ulcerative Proctitis Jan '08. Hospitalised Jan '09 for 3 days IV Hydrocortisone - had no effect! Hospitalised Feb '09 for 7 days (5 days - IV Hydrocortisone)
  
Currently taking daily: 
20mg Prednisolone tablets, 100mg Azathioprine (started taking 11th May),1g Acetarsol suppository every other night, 1g Mesalazine granules x 2 
Motilium (anti sickness), 1.5mg Zopiclone (taken when needed for sleeping), 10mg Citalopram (anti-anxiety/depression), Probiotic Multivitamins 
                             
                             


qazwsx12
Regular Member


Date Joined Nov 2008
Total Posts : 63
   Posted 6/30/2009 12:40 PM (GMT -6)   
Was on them for about 8 months last time. My knee has some pains in it now which started to go away after a couple of months, then I started taking pred again 4-5 days ago and the pain came back almost right away. The stuff really eats away at you. I'm going to stop taking it in another day or two, calling for surgery today.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/30/2009 1:42 PM (GMT -6)   
Or just ask me about the horrors. Months of unbearable pain, two shoulder surgeries with painful rehab and a shoulder that has permanently decreased range of motion and still frequent pain.

And don't trust the "Entocort isn't systemically absorbed" line. That's what I was on.
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.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


Apetro
Regular Member


Date Joined Aug 2008
Total Posts : 95
   Posted 6/30/2009 10:37 PM (GMT -6)   
Next month will mark 1 yr for me on prednisone. Not happy to be on it...but it seems to be the only thing that works. Going to the GI to discuss my other options....
http://asilentocean.blogspot.com/  -> My blog
 
Diagnosed 7/27/08
 
Asacol- 2.4g/day
 
Prednisone 20mg/day 40mg/day  20mg/day and tapering again....


PoohPooh Circus
Regular Member


Date Joined Aug 2005
Total Posts : 102
   Posted 6/30/2009 11:18 PM (GMT -6)   
Take my example being on and off mostly on pred for about 5 years and for a long time at below 10mg doses. Due to the damage from this I have had multiple surgeries over the past 3 years
2 abdominal hernia , gall bladder, both eyes (cataracts) shoulder and several other issues with carpel tunnel , trigger finger that probably will need surgery and I am scheduled to have surgery and a screw inserted to repair a broken foot neaxt month.
Prednisone is really good if used only in a short burst but it has very evil effects when used long term and I suffered quite a bit getting off it but with the help of Humeria for the last 5 years I have been able to avoid it. The last bad flair the nurse said when I talk to the Dr he is going to say either go on the pred or come get admitted I said sign me up I want to be admitted rather than take pred the Dr called me about 5 minutes later and we worked out another plan.
 
 
Since 1997 
 
 
 


shortstuff1
Regular Member


Date Joined Feb 2009
Total Posts : 80
   Posted 7/1/2009 6:59 AM (GMT -6)   
I was on steroids for 6 months and decided that this wasn't for me. All of the physical and mental side effects were not worth it. I now have bad ankles and bad wrists - by bad, I mean that I have pain in the mornings and pain when sitting still for even short periods of time. At 29 years old, this to me is abosolutely caused by the steroids as I had no problems before. I just did my first dose of Remicade and the very next day, I felt incredible. Finally had normal poop! I'm going back next week for my 2nd treatment. I would highly recommend for those who haven't tried Remicade, to discuss it with their doctors. I had to get a second opinion for this to be an option as my first doctor only seemed to treat with steroids. I'm a definite believer in the Remicade as it put me immediately in a form of remmission where I had more energy and could leave the house. I was stuck at home because of using the bathroom more than 30 times a day. Good luck!
29 yr old recently diagnosed with UC in Nov 08. Taking Asacol 3 times daily and Steriod enemas 2 times daily. no children, very active;


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 471
   Posted 7/1/2009 12:55 PM (GMT -6)   
I have been on pred for 6 years straight now, I am totally steroid dependent.
 
I know its terrible to be on it for so long, and my GI has been telling me for years I must get off of it, but I am not ready for surgery just yet.
 
Luckily I have managed to stay on pretty low doses for thelast few years - i am on 3mg.
 
Apart from the moon face, osteoporosis is the main side-effect I have suffered.
Abatacept Trial since Feb 2008 (Open Label)
Back on Pred - 4mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x6
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/1/2009 1:16 PM (GMT -6)   
That's just weird to me that you are ok on 3mg. I mean, the body normally produces the equivalent of roughyl 7mg a day (I think that's right anway) so it seems odd that 3mg helps.

Have you looked into trying Humira?

Honestly, I'd do surgery before I'd risk my health like that.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 471
   Posted 7/2/2009 4:19 AM (GMT -6)   
Fruitgirl - No, I havent tried Humira as I am on Abatacept infusions and you cant take both.  Abatacept has allowed me to reduce my pred to 3mg - without it I could not get below 15mg.
 
3mg does sound like a ridiculous dose, but it makes a HUGE difference.  If I try and go below this amount, I will go into a serious flare. 
 
I had my natural cortisone blood level checked at the hospital a while back and it showed my adrenal glands, after so many years on pred, are no longer working as they should.  I think they prouduced only around 2mg of natural steroid - so the extra 3mg I take in tablet form, kind of help to bring me up to a "normal" cortisone level.  Not an ideal situation, but at least it is a low dose.
Abatacept Trial since Feb 2008 (Open Label)
Back on Pred - 4mg - Steroid Dependent :-(
Azathioprine 150mg
Colazide x6
Actonel 35mg, EPA Fish Oils
Predfoam Enema - Had to stop as not allowed during trial
Asacol x 9, Lialda (Mezavant)
Remicade every 8 weeks  (Stopped working)
Aloe Vera Lily of the Desert Juice  Gave me the worst D !
Primadophilus Reuteri Probiotic
 


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/2/2009 8:58 AM (GMT -6)   

I am in my 6th month of prednisone - tapering from 40 mg. and now on 5 mg.  If the rectal meds do not put me in remission I will happily go back up on prednisone to whatever it takes.  I am 69, no new problems.  I have arthritis, bad knees, etc. all before prednisone and they all feel much better while on at least 20 mg.  I know I would feel differently if younger but right now I would stay on prednisoe rather than ever have surgery.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 7/2/2009 9:06 AM (GMT -6)   
Ah, I'm not familiar with Abatacept, so that makes sense why you aren't on Humira!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 7/2/2009 10:51 AM (GMT -6)   
I'd like to chime in here...as the mom of a 22 yo who has Osteonecrosis after only 4 months of Prednisone use....please don't think this can't happen to you.  If you've been told you have bursitis, or you "suspect" arthritis because your hips/knees/shoulders hurt, it would be in your best interest to have those joints evaluated with an MRI.  Had we not investigated my daughter's knee pain, she'd still be walking around with achey joints that would be getting worse without our knowing that her bones were really dying.  Because we found it early (as devastating as it was to find out), and get her joint sparing core decompression surgery which hopefully will halt the progression of this disease.  You will recognize my story in the link that Sue has posted from the jpouch.org website.  Here are a few academic sources that I like to post in case anyone wants to investigate further:
 
"Because measures to preserve the joint are associated with better prognoses when
the diagnosis of AVN is made early in the course of the disease and because the
results of joint replacement therapy are poorer in younger age groups than in
older patients, it is critical to diagnose AVN as early as possible to prevent
or delay progression of the disease"
http://emedicine.medscape.com/article/386808-overview

"The diagnosis and treatment of nontraumatic osteonecrosis of the femoral head.
Etienne G, Mont MA, Ragland PS.
Sinai Hospital of Baltimore, Rubin Institute for Advanced Orthopaedics, Center
for Joint Preservation and Reconstruction, Baltimore, Maryland, USA.

"Osteonecrosis of the femoral head is a potentially debilitating disease that
frequently affects young patients in the third through fifth decades of life. If
untreated, this disease will result in total destruction of the hip joint;
therefore, early diagnosis and intervention are essential to optimize outcome.
Although the etiology of osteonecrosis of the femoral head is poorly understood,
awareness of well-established risk factors and associated disorders can assist
in early detection and possible prevention of hip joint destruction. All
patients with symptomatic hip disease should undergo standard radiographic
evaluation; however, MRI remains the most sensitive diagnostic modality.
Depending on the stage of the disease, options for treatment range from
minimally invasive procedures such as core decompression to total joint
arthroplasty."
http://www.ncbi.nlm.nih.gov/pubmed/15116601?ordinalpos=3&itool=EntrezSystem2.PEn\
trez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum

20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5965
   Posted 7/2/2009 11:05 AM (GMT -6)   
    OMG...how devastating!  I am so sorry to learn your daughter has to go through this.  Do you think this was something she may have had prior to the prednisone use and the prednisone just pushed it over the edge or what?  I had never heard of this, but I do know several people who have suffered with bone problems stemming from early childhood who never took prednisone.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 7/2/2009 11:12 AM (GMT -6)   

Both gastro doctors I have seen told me that extended prednisone use could cause this - probably my only real concern - and certainly would be if I were younger.  I had all my arthritis, etc. BEFORE prednisone - nothing new yet!

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   
Cannot tolerate mesalamines.  New specialist (June) - Cortifoam and Anusol three times a day for now.  Hope it works!
 
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


Buckeyeinfl
Regular Member


Date Joined Oct 2006
Total Posts : 114
   Posted 7/2/2009 11:25 AM (GMT -6)   
Hi Christine - she was COMPLETELY healthy before taking prednisone...I could post another report by Klingenstein that states clearly that "IBD predisposes patients to corticosteroid induced osteonecrosis. An exact threshold dose has not been determined. The data suggests that either long term therapy or short term high dose treatment increases the risk of osteonecrosis. Even if symptoms are limited to one joint, multiple joints are often involved and comprehensive testing with MRI is indicated in all cases." http://www.ncbi.nlm.nih.gov/pubmed/15691298

The thing about osteonecrosis (aka avascular necrosis) is that it is silent...it can lay "dormant" until the bone starts to break and fracture and then you may be told that you have osteoarthritis because arthritis is the endpoint of this disease. I'm not trying to scare anyone...just raise awareness...but, it may present with a clicking sound, or some arthritis like stiffness and can come and go..and to confuse the situation, many of the medications that IBD patients take cause joint pain, so it's so important to investigate with MRI. Her pain comes and goes with use or with bad weather so many people think it's just arthritis. I've chatted with several people who email me privately and I'm thrilled when they investigate and it turns out that it isn't ON, but if it is, it's really important to find an ortho who specializes in treating this disease.
20 yo daughter w/ Pancolitis
diagnosed 8/30/06
Step 1 colectomy/jpouch creation 11/27/06
Step 2 takedown 2/9/07
VSL #3 DS
21 yo Daughter diagnosed with right shoulder, bilateral wrist, 
bilateral elbow, bilateral knee, and bilateral ankle avascular necrosis
(aka Osteonecrosis) as a result of Prednisone use
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 7/2/2009 1:09 PM (GMT -6)   
I attached this thread because I think there are too many people who know they shoudn't be on long term prednsione but choose to because they don't like the alternatives (immunosuppressants, biologics, or surgery). But I think those people who choose to stay prednisone should read the stories of those former UC patients who have had devastating results and in hindsight wished they had chosen a different treatment plan. Be informed. Know the risks and if you are willing to live with the risks then by all means continue your 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


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 7/2/2009 1:29 PM (GMT -6)   
I wish I had known more about the risks before taking it. It's my fault for not researching it, but all my GI said the first 2 months he avoided putting me on prednisone was "I dont want to prescribe it because you might get some acne". Haha...yeah, that's what is most important. He never mentioned any other possible side effects.
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)
20 mg Prednisone AM, 15 mg PM (tapering from 60mg a day)
Started Remicade 6/11/09
Was on Asacol (2400mg or 3600mg a day) for 6 months with no success

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