Steroid dependent? A word of warning!

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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 443
   Posted 2/3/2010 8:45 AM (GMT -6)   
Hello everyone
 
Well, I have finally come to the end of an almost 10 year prednisolone rollercoaster nightmare.
 
I have had severe UC since 2000, and have been flaring for 7 years.  I have been on pred for the whole of that time - in varying doses, ranging from 2mg to 50mg. 
Each and every time I managed to get off the steroids, I got sick and the inevitable UC symptoms flared up with a vengeance - usually after only a few days = back to 40mg and bleeding. I then tapered and the same thing would happen all over again - a horrible vicious circle.  This went on for years.
I did the taper exactly as you should. In fact, I was more cautious than most.  Once I got to 10mg per day, I reduced my pred by 1/2 mg PER MONTH.  Thats right, a tiny 1/2 mg every 4 weeks ( and even then I alternated to lessen the blow).  I used rectal meds, made sure I was on the correct dose of Azathioprine, etc.  I was told by my hospital that I was on the slowest pred taper they had ever seen!
 
 
I also tried Remicade, and various other meds.  There was nothing more I could have done.  But, still I could not get off the pred. 
Last year, after I had been on 3.5mg of pred for 18 months, I started to get unwell.  Night sweats, dizziness, fatigue, weight loss, no apetite.  I thought I had lymphoma and was petrified.  My GI arranged for me to have x-rays and an ultra-sound. Lymphoma was ruled out.
I was then told my symptoms were classic UC symptoms.  But, I have had UC for 10 years and I knew it must be something else.  I should mention I was repeatedly told I "must have surgery and get my colon out" as I "simply cannot stay on steroids forever".  I was told this by countless doctors over the past 7 years.
 
 
I did a LOT of research on the net and in summer last year I discovered I could have Secondary Addisons Disease due to long-term use of pred. 
My symptoms all pointed to Addisons Disease. I went to my  family DR and told her I believed I had Addisons and I needed to be referred to an endocrinologist for specialist tests. She refused.
She laughed me out of her office and said "there is no way I could have Addisons as it is too rare".  She then sent me away and told me to "go and have a HIV and syphillis test".  I knew it was not either of them.  So, I was very upset not to mention angry.  I had the tests - all negative.
 
 
I went back to my hospital and told them about my un-cooperative Dr and asked them to refer me.  They normally cannot do this (for funding reasons) but one sympathetic GI thanfully agreed to refer me.  WELL, after 6 months of waiting and being ignored and branded a hypercondriac - I was finally given a synachtnen test to check my adrenals.....and guess what - I HAVE ADDISONS!
 
 
It is absolutely unbelievable.  Nobody would believe me. And I was right all along. NO wonder I could never get off steroids. Because, my adrenals have effectively shut down. I have now been told by the same Dr's who were pestering me to get off the pred - that it was unlikely I will ever be able to come off steroids. It would be life-threatening. 
So, thats my story.  I wonder how many other people are in my boat.  I cannot believe GI's do not routinely test adrenal function before ordering us off steroids. It is quite frankly, dangerous. 
I am no longer labelled as simply "steroid dependent" but Addisonian.  The test was uncomfortable but its over in a couple of hours and I am SO glad I finally have a proper diagnosis.
 
It is unfair that I have had to self-diagnose in the face of so much medical opposition.  I have filed a formal complaint against my GP.  She should be fired.
 
I hope others will read this and hopefully avoid the misery I went through.
 
Take care
 

Pan UC - 10 yrs
 
Prednisolone 5mg -
Azathioprine 125mg
Colazide 9x 750mg
MLN0002 (Vedolizumab) Drug Trial
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 21968
   Posted 2/3/2010 8:49 AM (GMT -6)   
I have never been on pred and for that I am grateful but your story goes to show you that sometimes you have to be your own advocate. I'm sorry that you got diagnosed with this but I'm glad you found the cause of your issues. What do they do for Addison's?
 @--->--SHERRY--<---@
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~Left sided Uc-'92-Colazal(6 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate ALL mesalamines**~Allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome~Sacroiliitis~bulging and herniated discs C5/C6 & C6/C7~Epidural injections (2 series of 3), OA-Tylonel Arthritis, Celebrex, Fibromyalgia (diagnosis pending)
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barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 443
   Posted 2/3/2010 9:10 AM (GMT -6)   
Sherry - It is basically steroid replacement therapy.  Usually, hydro-cortisone. I will see my consultant in a couple of weeks and will decide then on the course of action.
Pan UC - 10 yrs
 
Prednisolone 5mg -
Azathioprine 125mg
Colazide 9x 750mg
MLN0002 (Vedolizumab) Drug Trial
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5396
   Posted 2/3/2010 9:15 AM (GMT -6)   
You're right! Patients need to educate themselves about the drugs they choose to take. Most patients don't realize that 4 months of prednisone use is considered long term! The side effects of long term (4 mos or greater) can be devastating and irreversible. Thanks for sharing your story.

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 : 5466
   Posted 2/3/2010 9:24 AM (GMT -6)   
     I had a close friend who was diagnosed with Crohn's in 1984 at age 37.  She was being treated by her family doctor for diverticulosis until she passed out on her kitchen floor and was rushed to the hospital.  It was there that she was diagnosed with Crohn's.
     Unfortunately, it wasn't explained to her how dangerous it was to halt the prednisone cold turkey.  When she felt better, she stopped the prednisone.  I am not sure how many mgm per day she was on at the time. 
     I would sue that doctor who scoffed at you!  I think we know our own bodies.
     I have become prednisone dependent toosad .   Although, I was able to wean myself off of it from time to time, but lately (the last yr and a half), when off it for more than a month I started to exhibit signs of UC.   Hopefully, Remicade will help.  I hit a glitch after my last infusion (3rd).  Doctor said we won't know whether I built up antibodies against the Remicade or I just suffered a stomach virus which threw me back in this flare.  My 4th infusion is the 26th of February.  Keeping my fingers crossed.  I am 63 yrs old and have had ulcerative proctitis since Sept of 98.
 
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008 for ten days.
Remission Nov 08 thru May of 09.
Flare May of 09 thru Aug of 09.  Very short remission.  Flared again Nov 1st.  First infusion of Remicade Nov 18th.  Taken off the 6MP,  still on Colazal, 30 mgm of prednisone, cort suppository every other night. Calcium, probiotic, vitamin with iron, benicar for high blood pressure. Flaxseed oil capsule.  Great improvement with first Remi infusion...hope and pray it continues.  Ambien CR for sleep.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 6828
   Posted 2/3/2010 11:21 AM (GMT -6)   
Thanks for sharing your story, and I'm sorry this happened to you. I'm glad my GI is so against long-term pred use...he's said he absolutely will not allow me to be on it any longer than 4 months at a time (nor be on it for 4 months at a time on a fairly regular basis). He said if I ever get to that point, it's either a stronger drug (Remicade, as it usually works quickly) or surgery. And I totally agree with him.
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 25652
   Posted 2/3/2010 3:20 PM (GMT -6)   
I'm not surprised to hear this at all....my heart breaks for you.

I hope you'll be able to have recourse against the doc.

quincy

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2738
   Posted 2/3/2010 6:47 PM (GMT -6)   
Thanks so much for posting this.  I am more or less low-dose steroid dependent (recently flared again after 2 weeks on zero) and wonder about this too.  One thing to bear in mind is that Addison's Disease patients who must use steroids to live normally due to zero adrenal output do NOT suffer the side effects of chronic steroid use- because to the body, a steroid (or more precisely, cortisol) is a steroid be it home-grown in the body, or externally provided.  It is steroids in excess of physiologic dose that can cause side effects.  Thus, even someone who has been roller-coasting on steroids will, in theory, not suffer side effects if they get down to a low dose that replicates physiologic output.  I hope that over time, however, your adrenals come back to life.  See a naturopathic or alternative doc- there are supposed to be ways.
 
What is involved in the test for Addison's, exactly?  I would like to get tested to see if my own efforts to get to zero are unsuccessful due to the UC or if they are in vain due to Addison's.  My own GP told me that adrenal tests are not meaningful unles sone has been off steroids for many weeks.


"In order to save the village, we had to destroy it." -- Medical proverb. 
 

Post Edited (Probiotic) : 2/3/2010 4:52:10 PM (GMT-7)


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 2/3/2010 8:18 PM (GMT -6)   
You sound like me with antibiotics. I just kept taking and taking them when I knew I shouldn't. I was even told I should not be on antibiotics for more than six months, yet I kept on taking them. What could I do? Cut off my skin?

Now I get colitis flares. And guess what? Doctors still prescribe me antibiotics even when I tell them that antibiotics could trigger a flare. They don't seem to realize the severity of the disease, probably because it's not their specialty.
In remission.
 
Figuring out how to reduce a flare or get into remission is a trial and error experience. Don't expect your GI to have all the answers. He was trained in making diagnoses, prescribing medications, and surgically removing the colon. He was not trained in alternative treatments. That's why they are called alternative treatments.

What works for me: Fecal transplantation, Probiotics, Anti-inflammatory foods, No HFCS, No crystalline fructose, No foods high in fructose, No artificial sweeteners, No pro-inflammatory foods when flaring, Vitamins, Lexapro (for stress).


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 2/3/2010 8:35 PM (GMT -6)   

Thank you so much for this thread.  I wrote one awhile ago about how long people have used pred, and in the meantime my NP called me yesterday and seemed pretty down on me for not having tapered off pred by now.  I started it at the end of Nov at 20 mg and have been at either 5 or 2.5 for at least a month.  Any day I stopped taking it, I'd bleed.  So I figured I'd do a very slow taper. 

When I talked to her yesterday, though, she let me know that my GI would not prescribe anymore for me (I didn't even ask since I don't need any...  2.5 is like 1/4th of a pill!)  Apparently for them my only option now is Remicade. 

It feels so horrible to be disregarded in your own health care.  I'm so tired of having to follow whatever regimen is popular at the time.  I'm glad you were a great advocate for yourself!  I'll consider asking for an adrenal function test if I fail with Remicade, assuming I begin that.  What a great idea, thank you!


Potato...  Female, 59, dx 11/07 mild left sided ulcerative colitis (50 cm), 10/09 condition has "considerable worsened" (per my GI) to panulcerativecolitis
 
Currently on Pred 5 mg, Asacol 3 3x a day, Rowasa every other night Imuran 150 mg (off until liver function is normal) 12/15/09 Back on Imuran 75 mg with weekly liver/blood tests 12/21/09 liver tests off the chart again, so I'm off Imuran for good.   
 
omeprazole 2xday, lomotil, cholestramine, atenolol, oxazepam (anti anxiety med) when needed, primadophilus reuteri, childrens centrum, slow FE, nicorette gum, metamucil fiber wafers
 
 


Kevman
Regular Member


Date Joined Jan 2010
Total Posts : 34
   Posted 2/3/2010 9:38 PM (GMT -6)   
Thanks to all for the great information. I am on my first course of Prednisone - from 40 mg per day, tapering off over 2 months by 5 mg each week ( yesterday I reduced to 30 mg ). I know I don't know enough about this drug yet, but by reading this forum and using the internet I am learning daily. I now know I will put up a fight with my GI doc if he suggests keeping on this. From what we have talked about up to now, his policy is only to use Prednisone when in a bad flare - little bridges to only be used once in a great while.
51 male, UC since 1997
5 day hospital stay January 2010
2 ea Asacol 3 x daily, 1 Mesalamine enema daily, 50 mg Mercaptopurine daily
tapering off 40 mg Prednisone ( should be off in eary March )


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2738
   Posted 2/3/2010 10:34 PM (GMT -6)   
Just to keep things in perspective also, it's important to note that many UCers are chronically steroid dependent- and/or roller coasting on it, for years or even decades and yet, once their UC is fully "cured" by means of colon removal and they have a j-pouch or ostomy bag, they normally come off steroids completely and without problems- i.e. adrenals shutting down permanently is not typical at all- this even for people who have been on high doses for years. In any case, I wanted to pass on the book reference "The safe Uses of Cortisol" by Dr. William Jefferies- it is written for medical professionals rather than being a pop health book, but it is a managable read. It is pricey- I found mine direct from the publisher for about half the price shown on Amazon here- but it is educative, and could probably be obtained on inter-library loan too:

http://www.amazon.com/Safe-Uses-Cortisol-William-Jefferies/dp/0398066213


"In order to save the village, we had to destroy it." -- Medical proverb. 
 


barnsbury
Regular Member


Date Joined Jan 2006
Total Posts : 443
   Posted 2/4/2010 4:34 AM (GMT -6)   
Thanks everyone.
 
Probiotic - It is a simple test. There are 2 versions of it , short and long. I only had the short one for now. They measure your cortisol level at 9AM - then give you an injection of synacthen.  After this, your cortsol level is measured again after 30 mins and 60 mins.  This will show if your adrenals have successfully responded to the injection by producing the required amount of cortisol.
 
I did produce some response to the injection, but it is no way near enough.   The injection can make you feel a bit sick and is quite painful but I have suffered worse!
 
Take care
Pan UC - 10 yrs
 
Prednisolone 5mg -
Azathioprine 125mg
Colazide 9x 750mg
MLN0002 (Vedolizumab) Drug Trial
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 1910
   Posted 2/4/2010 12:00 PM (GMT -6)   
You can do a test yourself called Raglands Test too. Need blood pressure cuff. May give you an idea if you want to go and do more testing.
Proctitis DX 1999, Pancolitis DX 2008
Remicade, Sulfasalazine 3g/day, Rear meds as needed
Psyllium (palm full twice daily)
Probiotis/VitD3 5000IU+Ca/1000mg DHA


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2738
   Posted 2/4/2010 10:12 PM (GMT -6)   
Thanks for the test ideas, Barnsbury, and Dr.A. Barnsbury- the fact that you got some response is reason for hope. Adrenals can shut down completely, temporarily, but come back to life over time once off pred.
"In order to save the village, we had to destroy it." -- Medical proverb. 
 


Burli
Veteran Member


Date Joined May 2003
Total Posts : 1045
   Posted 2/6/2010 8:46 AM (GMT -6)   
Strange that so many taper so slow towards the end. I have never tapered by less than 5 gm at a time. Even when I was taking steriods for over 6 months, years ago, I dropped by 5 mg. I do notice the bleeding and pain coming back the day afer I taper but it goes away after a few days on its own. I would taper from 40 down to zero by 5 every two weeks. I would avoid going up at all costs. Once I realized the prednisone would take me into remission (after 15 years and several flares and doses above 40-60mg) I switched to a different immune modulators or suppressant Imuran is acutally putting me into remission now but prednisone alone used to. There are not many others to try now but I hope more advanced drugs (biologics which target the colon) are soon available.

I'm very sorry you had this happen and good luck in your recovery!
43, male, UC diagnosed in 1985; Epilepsy; Lost hearing in one ear in 2005--unexplained


jars05
Regular Member


Date Joined May 2003
Total Posts : 247
   Posted 2/6/2010 6:57 PM (GMT -6)   
What a terrible doc. I've never heard of Addison's.
32, M, MO
Diagnosed with UC in 1997.
Medications: None.
Supplements: Ginseng, Gingko Biloba, Saw Palmetto, Multi, Calcium, Tribulus, Fish Oil, Fenugreek, Folic Acid, Super B.
 
 
 

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