This is from the NIH, NIAMS: "Steroid Medications
Corticosteroids such as prednisone are commonly used to treat diseases in which there is inflammation, such as systemic lupus erythematosus, rheumatoid arthritis, inflammatory bowel disease, and vasculitis. Studies suggest that long-term, systemic (oral or intravenous) corticosteroid use is associated with 35 percent (my emphasis)of all cases of nontraumatic avascular necrosis. However, there is no known risk of avascular necrosis associated with the limited use of steroids. Patients should discuss concerns about steroid use with their doctor."

And also from NIH: "According to the American Academy of Orthopaedic Surgeons, 10,000 to 20,000 people develop osteonecrosis each year, and most of them are between 20 and 50 years of age." ... I'm no math genius, but 35% of 20,000 is 7,000 people a year getting AVN/ON from steroids should be concerning to our FDA and to the people who should be able to decide whether or not they want to take this risk. You have to ask yourself, if the risk was 10% would you take it...yes, probably...but at 35% I think it should be disclosed. These numbers do fall far below the FDA's definition of a rare disease because it affects less than 200,000 people a year...no comfort to those who have their bones destroyed.

But, if the FDA can change the labeling for Cipro to reflect the risks because "several hundred reports of tendon rupture," then I think the risk to 7,000 people who may develop AVN/ON deserve to know that the possibility exists.

Charlotte pointed out that the warning about AVN/ON is on the FDA approved prescribing information website...and that's great...but honestly, the first line of information is that product monograph that you get with the drug from the pharmacy. If you do a search for Prednisone, the first site that comes up is this:
http://www.nlm.nih.gov/medlineplus/druginfo/medmaster/a601102.html
There is nothing there that talks about this risk, so how far does a patient have to look before they land on this possible risk? Again, it talks about osteoporosis and fragile bones, but not the death of your bones.

And I agree with Charlotte that Rick's case does sound like malpractice. If he was with a doctor that long, there should have been a discussion about the risks. But in my daughter's case, she had one vicious attack of UC that never let up, so 4 months time in the midst of panic at seeing my daughter so sick out of the blue, I'm supposed to keep reading and digging up information about the one medication that she was taking when she was taking asacol, colazol, antibiotics, hospitalizations, IV drugs, PICC lines, x-rays, CT scans, colonoscopies, blood transfusions.. etc. etc, researching diets, making homemade yogurt etc etc, worrying my head off about her...and none of it made any difference because she ended up losing her colon anyway..and now areas of her bones are dead? Yes, she was very, very sick and many of you will come back and say well, it sounds like she needed the medication...it never helped her...she was just spiraling out of control.

I know there's a place for Prednisone in our country, and I'm glad it helps some, but the labeling laws should be changed..that's all I'm saying. A patient should be able to look at the product monograph, see the percentage of risk and not have veiled or vague information that distorts their ability to make an informed decision.

Elise, do you know (I don't) who makes up the product monograph that you get at the pharmacy? To get more specific, it sounds like your complaint may be that the pharmacy isn't required to give out the FDA-approved prescribing info on the drug. Having read the piece I linked to, I'm sure you can see why--it's pretty dense stuff. What should the compromise be?

As you know, saying that prednisone is associated with 35% of all cases of AVN isn't the same as saying that it causes AVN in 35% of the people who take it. If the monograph you got at the pharmacy were changed, it would say something like "AVN: less than 1% risk," because that's what you get when you divide 7,000 cases by the number of people taking the drug in a year. Hindsight is 20/20, but do you think that would have been enough for you to insist that your daughter not take the drug?

I know I took risks of similarly rare side and similarly severe side effects, both with prednisone and with Imuran, because the disease I had was making my life unlivable, and because surgery and the other drugs available had risks that were even higher. It is infuriating how many unhappy compromises there are in treating these diseases. I'm really sorry about what your daughter is going through.

Rick, best of luck to you. I'm sorry you are going through this. I agree that docs hand out the prednisone like candy. I'd have to sit back and count how many years I was left on it...with little to no information about the major side effects (other than what could be seen on the outside: chubby cheeks to go with my Buddha belly. Oh, and mental health issues, which I was told was a "normal" side effect.) Yah, it does seriously piss me off when I think about it. I was young when it was first prescribed (but an "adult") and "listened" to my doctor. I pray nothing happens to me in the future. You are doing the right thing.
There is a place for the use of prednisone. A limited one. I would refuse to ever use it again unless it was life/death.

I think this is the same drug that we have over here called Prednisolone.

It was the only thing that kept Crohns at bay when I suffered from it 18 years ago. The two years of increasing dosage made me have a fat face and cataracts. It took 10 years to shake those buggers out of my eyes and one less colon to get me of all medication and make my face less inviting of ridicule.

Dan, Prednisolone is a dose pack here in the US. Not the same as prednisone increased dosage as used for UC here.
I was on it for 13 years. Doses as high as 80mg. Moon face too.
I had my j pouch surgery 20 years ago. I have not had any side effects from the long term use of prednisone.
I think as always we all have different reactions to all drugs.
I am 55 and have strong, healthy bones.
No arthritis either. It's the genes!
Antibiotics have long term side ffects also.
They destroy the immune system.
My son took Acutane for Acne and was never told of the dangers that it can bring on UC and Crohns. Given the family history which he knew, I agree, the Dr's take no responsibility. They just dole out high cost meds that reps stuff their offices with and wait for the profits from the scripts they write.That of course is my opinion!
Shelby,
Good to see you here again.

This message has been edited. Last edited by: "HW",

Holly, I think Dan is right. Here in the UK Prednisolone is exactly the same as Prednisone, just a different name. With Prednisolone you still have to increase the dosage slowly and then ween back off it again just as with Prednisone.

http://en.wikipedia.org/wiki/Prednisolone

I was on as much as 120mg of Prednisolone at one point the year prior to my surgery. I never managed to gert below 40mg without flaring uncontrollably and even at 120mg I was still losing blood and weight along with living with incontinence. I had the moon face but was so ill that I didn't actually gain any weight while taking it. The legacy of being on and off high dose steroids for over 20 years has left me with osteoporosis amongst other things.

Nasty nasty drug!

Shell

Thanks Shell. We have both here.
Either way it is a nasty drug!
I suppose I am one of the lucky ones. I just had my bone density scan today and it is actually better than the prior one 2 years ago. I don't take anything either.I suppose the cheeses I eat provide me with alot of calcium.

Keep in mind that what they know now is different than what they knew a decade or more ago. Still, it would be nice to be kept up to date as new information became available.

Jan

I've recently taken steps to report my daughter's adverse side effect to the FDA. Here is the website:
http://www.fda.gov/medwatch/
and here is the page for begin the report process:
https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm
It will ask for relevant tests/lab data so you might want to have that info sorted out before you begin the process.

PLEASE, if anyone who has steroid induced osteonecrosis, go to this site and take the time report it. That may be the first step to get the FDA to change the labeling on the Prednisone medication and inform patients of this devastating bone disease. You can be a part of the solution that gives patients the information needed to make INFORMED decisions. THANK YOU!

Hey EliseC,
Thanks for the info on The FDA website. I go for an appointment with a "joint specialist" who I am sure will order a MRI for my right hip and knee which is the first step towards surgery to replace the hip. I have already been told that my diagnosis is Avascular Necrosis accompanied with arthritis. I need to remind myself to make sure they MRI the left hip also because I hear that many times if you have the disease in one hip, it may very well be in another. I am going to ask the doctors why they think it is a side effect of Prednisone. Then I will fill out the info on the FDA website. You are doing a great service to push for changes on the labeling of Predinose. Like you say, doctors need to advise their patients of the dangers of prednisone more thoroughly and I will continue to spread the word about the horror stories and all the evidence suggesting that Prednisine is responsible for needless suffering and unneccesay sugeries. If I only knew what I know now I would never have taken it. Thanks Again,
Rick

The research on sterioid induced Osteonecrosis (ON) has been a journey for me. I do want to point out that the FDA lable DOES disclose the risk of ON. I spoke with a pharmacist yesterday and he told me that in pharmacy school, they are taught "not to scare people." He was dumbfounded as to what has happened to my daughter after 4 months of treatment and went on to say that Prednisone "is the gold standard".... downright scary.

So, I've written a letter to the manager of the pharmacy to find out who puts out the information on the product monograph sheets and why it's a watered down/vague version of what the FDA had determined as information that the public should know.

I understand that doctors don't have the time to have lengthy discussions about ALL of the side affects of drugs, so the pharmacy should be the starting point for in depth information so that patients can have further discussions about their healthcare.

If nothing else, I feel like Prednisone should have a black box warning.

EliseC, I agree. It is very hard to notice and most people would not know what femoral damage is anyway. One thing I thought of after asking myself how this could happen to me was that I have been using Flonase which is a nasal spray that has corticosteroids as the active ingedient. You spray 2 squirts in each nostril and it goes straight through to the brain without having to go through the liver and other filtering organs. I used to use Beaconaise which had been pulled from the market after bad side effects were starting to appear. I friend of mine told me she had to have her sinuses rebuilt after using Beaconaise for years. I don't think Flonase is any different. My doctor didn't give me any warning or educate me at all in the potential dangers of Flonase. He even knows my history of steroid use and he still didn't even think about what could happen to me. It just goes to show how importatant it is for the doctor and pharmacist to educate users of steroid product on the real and devastating problems they cause.

Know what you mean Rick, I'm frustrated with my daughter's primary doc right now. She went to him this last week to get something to treat a skin problem...and what did he want to prescribe? A steroid ointment...and here she is on crutches after having had core decompression on almost all of her joints as a result of Prednisone CLUELESS! I've been doing research on this since she was diagnosed and there are cases of ON with low and high dose steroids as well as ON from steroid enemas which many people with UC and Crohn's use. I'm exploring some different avenues to see what I can do, but so far it's been a very frustrating road. Take care, email me any time since you and I are the only ones that seem to be concerned about ON. Let me know if you need any research material or have any questions. I belong to an ON support group who have been extremely helpful.

just spotted this post and sorry for replying after several months but I am a newbie, so allowances have to be made.
My husband has been on this now for nearly two years. His consultant did warn him of side effects and also a leaflet came in the box with the meds. Whether this is different in the UK from the US. He has now been diagnosed with osteoarthritis of the hip and is on meds to help this. Consultant did say that when he is off prednisone this should ease the osteoarthritis and he is now slowly being weaned off it. So fingers crossed.

Hi Lisa,
You said: "His consultant did warn him of side effects and also a leaflet came in the box with the meds. " and the meds here do come with a leaflet, but the side effect of Osteonecrosis is not there. It's veiled as "bone pain," "broken or fractured bones," or "bone loss" and mention Osteoporosis. From the mother of a child that's been adversely affected by this drug, I look at those descriptions as veiled disclosures for the real culprit of Osteonecrosis. And, if you don't know to be on the lookout, the dianosis is many times misdiagnosed at first as being a possibly arthritic condition.

So, my question then is your husband SURE that it's Osteoarthritis (OA) and not Osteonecrosis (ON)?? As I stated in one of my previous posts, Osteonecrosis will not show up on regular x-ray in its early stages, but an MRI will reveal that it's ON. My daughter's rheumy suggested that hers was also probably OA, but thankfully did an MRI "just in case" because she had been on steroids. After finding out the devastating news that it was ON, we had to search and search for an orthopedic surgeon who was knowledgeable about ON and how to treat it.
Early detection is imperative if the joint is to be treated with a surgical technique that has an 80% success rate of halting the disease, preventing the collapse of the bone/or prolonging the need for joint replacement.

IMHO, joint pain is often confusing for IBD patients because the disease process can cause joint pain, the prednisone can cause joint pain, and the ON/OA can cause joint pain. When in doubt, MRI any joint that is particularly painful or makes a clicking noise.

All the best to you and your husband..
Elise