Dear people, I am a former Ulcerative Colitis victim. I go my first case of UC in 2000. I was put on Prednisone and Asacol. It went away but it returned about 6 months later and again I was prescribed Prednisone and Asacol. It went away and I was told to keep taking the Prednisone even after it went away and my GI doctor left me on it for over 2 years. The Ulcerative Colitis came back in early 2003 and I had a bad case of it. I lost over 40 lbs. and was in critical condition with bloody stools and agonizing pain with a constant urge to have a bowel movement. I had to go to the emergency room and I was told to go see a a GI doctor and he kept me on the Prednisone. He was the first one to tell me I would have to have my large intestine removed. I went 2 weeks with no improvement so I was referred to a very good surgeon and he hospitalized me and did a wide variety of tests and it came back positive for Ulcerative colitis and he said their was no way around avoiding surgery. He said if I waited I would run the risk of getting Crohn's or cancer if the diseased colon spread. In the hospital they pumped bag after bag of Prednisone through my veins intravenously and with no results after a week of Predisone and antibiotic treatment I decided to go with my doctor’s advice and have the ileoanal j pouch performed.
Here is what happened. I know that the reason that my ulcerative colitis would not go away is because of the Prednisone I have taken for two years straight. there is no way my body was going to heal with that poison in my system . I am absolutely sure of it. I had an ulcer the size of a golf ball. NOW IT IS 5 YEARS LATER AND I WAS JUST DIAGNOSED WITH AVASCULAR NECROSIS WHICH THE DOCTORS HAVE ATRIBUTED TO MY USE OF PREDNISONE. THEY SAID I HAVE TO HAVE A FULL HIP REPLACEMENT. I am a healthy 52 yr. old and stay very active to keep my heart healthy. They said AVASCULAR NECROSIS IS A COMMON SIDE EFFECT OF PREDNISONE. No one told me. Why did my GI doctor leave me on it for so long? PLEASE LISTEN TO ME WHEN I TELL YOU THAT YOU SHOULDN'T TAKE PREDNISONE FOR MORE THAN 2 MONTHS. THERE ARE ANTIBIOTICS TO FIGHT ULCERATIVE COLITIS. PRDNISONE JUST SHUTS YOUR IMMUNE SYSTEM DOWN AND IT KEEPS THE DISEASE FROM RAPIDLY SPREADING BUT If YOU ARE NOT CURED WITHIN A MONTH OR TWO, PLEASE STOP TAKING PREDNISONE. IT IS POISON AND IT WILL DESTROY YOUR LIFE. TRUST ME BECAUSE I HAVE LOST MY LARGE INTESTINE AND AM ABOUT TO LOSE MY ENTIRE RIGHT HIP. IT IS ENTIRELY FROM THE SIDE EFFECTS OF PREDNISONE. IF YOU WANT TO HEAR SOME HORROR STORIES FROM VICTIMS OF PREDNISONE GO TO THE FOLLOWING WEB ADDRESS AND CLICK ON THE MESSAGES FROM CONTRIBUTING VICTIMS OF PREDNISONE.

http://mb.rxlist.com/rxboard/prednisone.pl?noframes;read=1119

I HOPE I CAN OPEN YOUR EYES TO THE VERY REAL DANGERS OF THIS DRUG AND MAYBE SAVE YOU CAN TELL OTHERS ABOUT THE REAL TRUTH THAT IS NOT DISCLOSED BY THESE DOCTORS THAT HAND THIS STUFF OUT LIKE CANDY.
YOUR FRIEND,
RICK

This message has been edited. Last edited by: RickCarter,

Rick,

I am sorry to hear of the devasting effects of prednisone on your body. You're preaching to the choir on this one; many of us had surgery to get off prednisone. A great place to share your story is on the boards where people who still have active disease participate.

Sue

Rick, I can completely empathize with your situation, though I was lucky to not have any long lasting side effects from prednisone....for now anyway. When I was sick I did a lot of reading into what these drugs can do to you, and decided pretty quickly, within a few months of starting prednisone that surgery was the better option. It’s too bad that you weren't aware of the side effects; your doctors should have been more forthcoming with information as to the potential for major problems. My 4 month old was to be put on prednisone for an ocular hemangioma, I refused and she had successful surgery to remove it, even though most DR's said surgery wasn't a good idea. I agree that prednisone can have its negatives but there is a place in medicine for it, though I would not recommend anyone ever going on it long term if there are other options out there. Good Luck,Scott MC

This message has been edited. Last edited by: mrpickles,

prednizone almost killed me, i was on it for 10yrs. it suppresses the immunsystem. uc is idiopathic(meaning the cause is unknown) but the doctors believe it is an auto immune disease. that the immune system attacks the lining of the colon wall. the wall is lined with a barrier of mucosa. once this barrier is penitrated the immune system constantly reacts or attacks the area of penetration. bacteria or viruses are the most common pathogens. i have a jpouch, now the old tissue(retal cuff area) is infected with the same virus that attacked my colon. cmv is my confirmed biopsy. the question is when is idiopathic auto immune?

Hi Rick,
I just had to reply to your post. My daughter too has AVN/ON. She was on Pred for almost 4 months...and has confirmed ON in her right shoulder, both elbows, both wrists, both knees, and both ankles. Her surgeon has MRI'd her hips twice and shows no ON there...thank God! She's just undergone core decompression in all of those joints. It was caught early, so hopefully she won't become crippled by this disease.

You know you have it in your right hip, but where else is it? It's likely in your left as well b/c as you know, steriod induced ON almost always is bilateral in the affected joints. This disease lies silent in your body and presents itself when it becomes brittle, fracturing, and arthritic...often diagnosed as osteoarthitis in the end stages.

When we found a surgeon in Baltimore (email me if you'd like his information) who specializes in ON, the first thing he did was ask us to MRI all of her major joints as ON doesn't show up on regular x-ray until it's progressed to stage II when the bones start to flatten out.

We found her ON by chance. Her right knee started bothering her and we thought it was enteropathic inflammation from the UC disease process. Her rheumy was wise enough to order an MRI...that was the beginning of this nightmare for us. She has no symptoms in any of the other joints except her right elbow pain when she overuses it.

I've sought legal action and two lawyers have declined our case. Your reaction is identical to mine...I read all I could on Prednisone, the docs didn't say anything, the product monograph that comes with the medication is vague or veiled in it's description of "bone loss," but does disclose osteoporosis...which is far different than osteonecrosis and BONE DEATH.

I've talked with a woman whose husband is a Pathologist and she said he sees all of the hips that are taken out and many of them that are diagnosed as osteoarthritic often show osteonecrosis so the statistics of 10,000-20,000 ON cases are not acurate.

I'm appauled by all of this...but don't know where to turn or what to do. As Suebear suggested, I posted on other sites for those who have active disease and was told to stop inciting fear in people who are already facing so much and anxiety makes their disease symptoms worse.

I know there's a place for Pred in the medical community...and my daughter received the standard of care for her disease with this medication. But maybe we need the medical community to take a good hard look at the standard protocol, be upfront with patients so they can make INFORMED desicision, have accurate disease reporting so as not to keep blindsiding people with this devastating disease. THANKS FOR LISTENING TO MY RANT!
Elise

Elize,
I am so glad to hear from someone who knows the true dangers of Prednisone. I was just daignosed last week with AVN and the doctors told me I'm in stage 2 of this disease which there are 4 stages. I am abut to go for my consultation with the surgeons at Medical College of VA. I am ging to request that they do a full body MRI. I am scared but I am angry and I know what this drug has done to me and I have contacted lawyers and I really haven't recieved many calls yet. I am searching for the right legal avenue to take. I shouldn't have to be going through this nightmare and the Medical Community and all these doctors who hand this poison out like candy need to pay for the pain and suffering that the vicitms eveywhre are going through. I will keep in touch with you if I find a good lawyer and I would love the doctor's info that you are using. Thanks for reaching out.
Rick in VA

I am so surprised to hear of doctors treating Prednisone like a maintainence drug. My drs told me from the beginning it was intended to get me into remission and then they would get me off of it asap and use the other drugs (asacol, etc...) to maintain the remission. In my case I never had a remission (though the Prednisone is the only thing that gave me any relief) and the drs told me that long term Prednisone use was NOT an option. This was a primary reason surgery was suggested to me after only 6 months with UC.

I'm so sorry for those of you who didn't have the benefit of full disclosure from your physicians. I've experienced that regarding other j-pouch related issues and it left me feeling angry, frustrated and pursuing legal options.

What I found was that the legal profession wasn't much better (attorney had my files 9 months and kept saying he was still waiting for a review by his medical advisors - 9 MONTHS!). In the end I didn't pursue legal action. However, I did pursue therapy for myself so that I could work through all the feelings I was having. I would just advise you to keep on top of the attorneys if you are pursuing legal action because it doesn't take long for the statute of limitations to run out.

I hope those of you who have suffered lasting effects find some relief and solutions soon.

Hi JillM,
Thank you for your input. What you say is like a carbon copy of the knowledge passed on to me but I can't for the life of me figure out why my original and only GI doctor left me on a Prednisone regiment for over 2 yrs. He prescribed it like it was a maintenance drug. My Ulcerative Colitis came back for the third time and by then there was no way my body was going to heal. I talked to one lawyer and he said the statue of limitations is two years. It is been five years since I first took Prednisone for UC. I am talking to lawyers and I am getting great response from victims of steroids and if we can get enough of us perhaps we can make a difference in the Medical Community. I am researching very agressively and I will post you folks on any data I can find to further support the facts the Prednisone is a killer of joints and other terrible side effects. Please stay tuned and please try to find others who are going through the terrible side effects of Prednisone. I feel like somebody should pay for this nightmare that folks are going through. I posted a link on my previous post and within this website I heard a lawfirm mentioned that Erin Brochovich works for and I am researching to find out if anything became of this class action lawsuit. Remember the movie with Juia Roberts. As Elise said "the docs didn't say anything, the product monograph that comes with the medication is vague or veiled in it's description of "bone loss," but does disclose osteoporosis." I also have noticed on all warnings and diclosures that it doen's say anything about 'Bone Death" or Avascular Necrosis" which was only disclosed to me when I was in the emergency room and they had discovered in my X-rays that my hip needs to be replace. The first thing the doctor asked me was if I was on any long term steroid use. I said yes I was and he said, well that is more than likely why you have contracted this disease. It's a little late for that bit of information now. Again thank you reaching out and let's plan to gather informaton together so a least we can let other potential victims know. God Bless.
Rick In VA

I was diagnosed with UC in 1972 and even then, prednisone was not considered a maintenance drug. I was on it for about six months before my surgery, trying to induce a remission, but not because my GI encouraged it. On the contrary, I was urged to have surgery after 3 months without remission. So, I guess it all depends on your particular doctor. Most people are resistant to surgery, which can be frustrating to the doctors too. But, I sure can understand your anger when you were never told the consequences.

However, AVN is not a common adverse effect with prednisone. If someone develops AVN, one of the first questions asked is if they had long term or high dose steroid use, but half of AVN sufferers have not taken steroids. The big problem is that we cannot predict who will or won't develop adverse effects from prednisone, such as AVN, cataracts or adrenal suppression, so the recommendation should be to take as little as possible for as short a time as possible.

Jan

I know everyone's experience with this drug is different, but I still maintain that it should be disclosed by the pharmaceutical company so that a person taking it can make an informed decision.
If the FDA, who recently ordered a black box warning for Cipro and "new literature for patients emphasizing the risks" because "several hundred reports of tendon ruptures" have been reported according to the report I read from the AP, then I think the 10,000-20,000 a YEAR, and that's probably not accurate when the end stages of ON are diagnosed as osteoarthritis, then I think, if people who are harmed by this drug band together, we can make a difference in the way this information is disseminated.

Jan, you know I respect you enormously, but how can anyone say that AVN/ON is not a common adverse affect with prednisone if the diagnosis is so often confused or misdiagnosed at the end stages as osteoarthitis? I feel like the medical community is letting the public down by lack of accurate reporting that reflects inaccurate statistics on this disease. The real reason, I suspect, is who would take it if they thought it might kill their bones. It is such a widely used drug and the pharmaceutical company's bottom line would surely be affected.

I too am just so angry about what has happened to my daughter that I've been trying to research as much as I can, speak up and hopefully get anyone who suspects AVN/ON to demand an MRI. It could mean the difference because if caught early, it can be treated successfully to prevent the collapse of the joints.

Elise, I can't speak for Jan, but when I hear "10-20,000 cases," I think "compared to what"? As you point out, it's a widely used drug. Allergies, asthma, lupus, autoimmune kidney diseases, many kinds of organ transplants--the list of conditions in which it's used is almost endless. So how many people take it in a year vs. how many people have this effect? That's what goes into whether or not something is "common".

Prednisone is not sold mainly as a brand-name drug; it's mostly generic. No one is making much money on it. (It was by far the cheapest of the drugs I took for UC. I had one prescription for it that cost $1.88--no insurance!) My GI was clear with me that it was dangerous to bones, eyes, and endocrine systems, that it was not for long-term use, and that it had been conclusively proved not to prevent relapses of UC. The FDA-approved prescribing information for the drug, which you can find here:

http://www.drugs.com/pro/prednisone-tablets.html

does include a warning on AVN.

To me, RickCarter's situation sounds like malpractice. The FDA and the manufacturers are pretty clear about the risks associated with this drug and about the need to minimize its use, and RickCarter's doctor ignored these warnings. It's infuriating, but I think it's the doctor, not the drug, who deserves the anger.

I hated every day I was on Prednisone (7 months), and experienced virtually all of the reversible side effects it has to offer. Throwing out the last of it (last week) was one of the happiest days I've had in years. But it's very important and even lifesaving in the treatment of a lot of diseases even more dangerous and less treatable than IBD, and for which there sometimes aren't other good options. That makes it different from Cipro, because there are usually other choices when it comes to antibiotics.

This message has been edited. Last edited by: Charlotte Gilman,

Charlotte, Thank you so much for your valueable input. I am in the beginning stages of trying to put this puzzle together. Your information link on Prednisone does state that is causes Aseptic necrosis of femoral and humeral heads.
I agree that if I am to blame anyone it should be my doctor. One thing is absolutely clear to me is that Prednisone caused this damage. The discussion about the misdiagnosis of impairment, raises the important fact that medical doctors face the challenge to be dilligent on every X-ray and MRI that falls under their responsibility. One thing that is not stated in Prednisone information sheet is a guidelines for a maximum length of usage. I think a guideline should be in place to let users know that they are risking very serious side effects if they use steriods beyond a certain length of time. Perhaps they should offer some dismal testimonials of long time users who describe their dismal life altering and unneccesary sugeries including hip, knee and shoulder replacement. That would open patients eyes up.
I just want to thank you and Jan and Elise for piping in. All of it is helping me to see what happened to me and it helps me get a the answers I need.
RickCarter

Im sorry to hear that you're having problems Rick, and you're right. There should have been some mention of this when your doctor put you on Prednisone for that long a period. I know I hated being on it and all the nasty side effects that go along with it, but I'm going to have to play Devil's advocate here because Prednisone saved my life.

I was hospitalized after my first two years with UC, still misdiagnosed, and after literally losing half my body weight (I was 10 and normally weighed in around 100 lbs...I dropped down to 47lbs) a new pediatric gastrointerologist to the hospital came in and immediately put me on prednisone. The next day it was literally like nothing was ever wrong with me(aside from my weight loss) I felt 1000% better, and brief stints of prednisone here and there over the next 25+ years helped keep my UC at bay.

Now Im sure Im going to pay the piper in one form or another down the line for not only having colitis for so long, but also for all the meds that I've taken for it over the years. That's just a bridge I'll have to cross when I come to it.

I do understand what you're saying, but Prednisone in and of itself isn't bad. I dont think I'd be here today without it. How it's used...well sure, it can definitely cause problems (and yes, ALL of its potential effects should be disclosed!) But then again, anything thats used improperly or to excess isnt going to be good!

Good Luck Rick and I hope everything works out for you!!


Bill

It may seem like something is common when you get a bunch of people together with the same thing comparing notes, but when you consider the number of people who take prednisone who do not get AVN, it becomes an uncommon or even rare complication. That is pretty much meaningless to those of you who have suffered with it. I had my scare too and they were afraid I had it. Turns out I only have enteropathic arthritis/spondylitis, which is also uncommon (unless you get a lot of us together).

I definitely agree that doctors should tell their patients of the potential pitfalls of any treatment.

Jan

I had UC for 20 years and for most of that time it was treated with prednisone and azulfidine. I did not end up with AVN, but I did have side effects from prednisone. The notable ones were increased appetite, bloating of my face, and insomnia.

I was on a high dose of prednisone at the time of step 1 in 1992, and as I recall they continued to give me prednisone intravenously during and after step 1 because I had to be slowly weaned off the drug.

As suebear mentioned earlier in this thread, one of the often unmentioned benefits of J pouch surgery is that it finally gets you off prednisone. In the 16 years post takedown since 1992, despite battling moderate pouchitis or what is now being called "unknown form of IBD" since it is now in my ileum and I tested negative for Crohn's, I have not had to take prednisone at all. The symptoms have been controlled with antibiotics and other medications that do not give me any side effects at all.

Rick, sorry to hear of your problems with prednisone. My experience was that my doctors always told me prednisone was not a good drug to be on long term and they always tried to wean me off very quickly depending on how my symptoms responded. I can't say any doctor I ever had prescribed it like it was candy. Although I have had doctors prescribe me sleeping pills like they were candy. Fortunately I don't have to take those any more either.

This message has been edited. Last edited by: DJBHusky,