Question:

Sorry to disappoint you, but prednisone really does ruin peoples lives.

So does Crohn’s disease, untreated (or treated, for that matter). Unteated, it kills people. It is always a judgement call whether to risk side effects from the medication or possible worse consequences of not using the medication. Prednisone has a lot of potentially serious side effects, as do many other Crohn’s medications. A good doctor knows this, and tries to find the least damaging treatment protocol.

Response:

While I feel for your situation, I feel that it is inappropriate to create hysteria like this on a newsgroup that people really rely on for information. While I do not suffer from Avacular Necrosis, I was on IV pred for literally months over the last two years, as well as high doses

Sorry to disappoint you, but prednisone really does ruin peoples lives. I’ve had crohn’s disease for 14 years, and developed asceptic necrosis 8 years ago from prednisone therapy. My skeleton is weak and causes me a lot of pain, and I can’t walk any longer than a small distance. I’ve had hip and knee surgery so that I don’t have to be confined to a wheelchair.

Response:

While I feel for your situation, I feel that it is inappropriate to create hysteria like this on a newsgroup that people really re= ly on for information.

I am not creating hysteria on this list.  If I can save one person’s ability to walk because they were informed about avascular necrosis by me then I will be pleased.  I only wish someone had been caring enough to tell me. I do feel it is detrimental to mislead people into a panic about Avacular Necrosis.  It is well documented that Ulcerative Colitis =

causes Arthritis and prednisone can cause joint pain (whether your usage is long term or not), and I certainly would encourage anyon= e to speak with their doctors about any discomfort they are having in this area…there are means to determine cause and treatment o= f chronic joint pain. All too often joint pain among UC and CD folks is dismissed as arthritis and proper diagnostic tests are not done. Some lucky folks do get diagnosed, but have undereducated doctors who tell them that nothing can be done.  People should be properly informed! This newsgroup is a valuable tool to share questions about and experiences with IBD related symtoms, but everyone should realize th=

at not all of us are doctors (including myself) and that before jumping to conclusions about whether we’re at risk or not for someth= ing so terrible as what has happened to you, please talk with your physician. If you have had IV prednisone, no matter the duration or dosage, you are at risk.  All I have done is encouraged those who have joint pain and who have had IV prednisone is to see an orthopedic doctor! I hope you will take my suggestion as it is intended; as merely constructive for the well being of the newsgroup and not as a pers=

onal attack. To ask me to not inform people is not constructive to the well being of the individual who gets avn, but whose pain is misdiagnosed, ignored, and allowed to worsen untreated!  I refuse to do so! I stand firm in my conviction that education about our diseases and medical treatments are the only means we have to combat our il=

lnesses. As do I, which is why I will continue to warn people not to dismiss joint pain as instructed by their doctors and uninformed people on this list. Avascular necrosis is best treated early.  If you have had IV pred and you have severe joint pain, particularly in the hips, knees, and ankles, I encourage you to see an orthopedic doctor for proper diagnosis.  If avn is found, do not allow your doctor to take a wait and see approach to your condidtion.  Seek out other, more informed, doctors.  A more proactive treatment approach is currently being endorsed by leading orthopedic surgeons. Barbara Diehl

Response:

Barbara, While I feel for your situation, I feel that it is inappropriate to create hysteria like this on a newsgroup that people really rely on for information. While I do not suffer from Avacular Necrosis, I was on IV pred for literally months over the last two years, as well as high doses orally, so I know all too well about the mysterious and compromising side-effects of the drug. (INCLUDING losing bone density over a great percentage of my skeletal structure.)   Readers should know that Avacular Necrosis only occurs in a very small percentage of people taking prednisone. This is particularly important since many people with IBD and other illnesses must take prednisone for their severe symtoms. So while it is useful to know the very severe side-effects of taking the drug, I do feel it is detrimental to mislead people into a panic about Avacular Necrosis.  It is well documented that Ulcerative Colitis causes Arthritis and prednisone can cause joint pain (whether your usage is long term or not), and I certainly would encourage anyone to speak with their doctors about any discomfort they are having in this area…there are means to determine cause and treatment of chronic joint pain. This newsgroup is a valuable tool to share questions about and experiences with IBD related symtoms, but everyone should realize that not all of us are doctors (including myself) and that before jumping to conclusions about whether we’re at risk or not for something so terrible as what has happened to you, please talk with your physician. I really feel for your situation, as do many others.  I wish you well and hopefully some relief from your pain and suffering. We should all support each other in our efforts to wellness.  I hope you will take my suggestion as it is intended; as merely constructive for the well being of the newsgroup and not as a personal attack. I stand firm in my conviction that education about our diseases and medical treatments are the only means we have to combat our illnesses. Best regards, Hilary

Response:

I am due to have surgery May 28th, and will have to have IV steroid supplementation.  Does IV hydrocortisone cause avascular necrosis?  Do you have any medical references on this?

I’m not sure of the varing risks with the different types of steroids.  I don’t even think they have done many studies on this.  I did do some libary research when I was first diagnosed. All I found were articles on what caused avascular necrosis.  Nothing on treatment.  My current orthopedic surgeon just went to a conference in Feb. and that’s where she found out about 3 cases where it only took one dose to give someone avascular necrosis.  When I see her again at the end of the month for my pre-surgery meeting I will ask if she has any references since so many of you people won’t believe me. Barbara

Response:

Barbara, I have walked more than a foot in your moccasins. Would you be willing to hear from me? Yes, it is worse than discouraging   but only if you let it be. When I start to feel down I remember that it was not that many years ago that many people DIED from Crohns.  My doctor went into this field of medicine because he watched his mother die from the disease and determined that he would do everything he could to prevent that happening to some one else.  So remember that there are doctors and other medical people out there who care just as much as we do about fighting this  and many of them with good reason. Would you choose to die rather than go through what you are going through right now?   I know that given the choice I would always choose life. About being a bitter, unemployable, cripple:     Cripple – well maybe and maybe there is nothing you can do about it – but I know that exercise has helped me a lot and I hold out hope that they will find some cures for this in the future.    Unemployable – not unless you want to be – yes I work out of my home and there are times that I cannot work even there because of the pain – but I do work and my employers say that I give them more value for their dollar than most people who show up and "put in their time"    You have a computer, you have knowledge of how to use that computer, you have a modem and you know how to use it – that puts you way ahead of a large majority of the workforce.  Start looking now for ways in which you can use that knowledge as a marketable resource.    Bitter – this more than anything else you and you alone have control over.  And you must control it because they are learning more and more that the brain and mental attitude has more to do with wellness than all the medicines in the world.  No I am not saying and never will say that we "make ourselves sick"  but I have found that when I make myself think positive I feel better and the medicines seem to work better.  Besides, given a choice of whether to wallow in misery or enjoy what parts of life I can     I’ll choose enjoyment every time. Does this mean I enjoy walking with a cane and being uncomfortable?  Of course not.  It does mean that I won’t let this get me down.   I tie bows on the cane and go out and play with the neighbor children.  They don’t have to be yours for you to enjoy their company and I have yet to find a mother who doesn’t appreciate a hand and a watchful eye.   I guess what I am trying to say most is don’t let it get you down – if you do then the disease has won.  Won not only the battle with your body – but you have also let it win your heart and mind without a fight.  Don’t let it win, fight for your life and your love of life and along the way you will win more than you could ever dream Debbie

Response:

- Hide quoted text — Show quoted text – I keep reading post after post referring to joint problems from long term, high dose prednisone use. It takes ONE DOSE OF IV PREDNISONE to give someone avascular necrosis! That is all! Avacular necrosis is basically bone death.  It hits the hips, knees, ankles first.  It is horrid.  If you have joint pain and you have had one or more dose of IV prednisone I urge you to see an orthopedic surgeon.   Do not listen to misinformed GIs and know-not-it-all posters.  All it takes is ONE DOSE! Thanks for the input. But that is not to say that long term steroid use does not cause joint problems too. Lighten up. Good luck with your graft. I hope it helps. Roy

Long term steroid use causes many problems.  Unfortunately people are bamboozeled into thinking that only long term use causes long term side effects.  I read post after post where people are advised by doctors and laypeople that the joint pain will go away after the steroids leave your system.  When the truth can be different.  Because this horrible thing has happened to me I feel it is my responsibility to other UC/CD folks to remind you not to take the word of a doctor as TRUTH with a capital T. Not everyone who has IV steroid therapy will develop avascular necrosis, but if you have had IV steroids and have joint pain – see an orthopedic doctor, have an MRI done, because if you don’t, and you do have avascular necrosis it will only get worse and may become untreatable. Visa via the advice to "lighten up" Yeah, sure. You get told at the age of 32 – after spending 6 months in the hospital fighting for your life – that you have 2 walking years left and that you should just resign yourself to living in a nursing home on a $300 a month social security check with no health insurance! You spend hours just trying to find a comfortable position to sleep in because your knees, hips and ankles hurt so much that no position is barely comfortable.  You cry so hard in pain and dispair that you have totally dry tear ducts.   You worry about losing your job and your thus your health insurance when the day comes that you can’t walk and thus can’t drive yourself to work.  You try to decide what to do, drive under the influence of pain killers or drive under the influence of excruciating pain.  You try to figure out how to carry groceries into the house when you have one hand free – the other is clutching a cane to help you walk. You try to carry stuff while one hand is clutching a cane and the other an ice chopper as you try to make your way down a flight of icy stairs while it’s 40 degrees below zero.  You choke up while watching others hold children you know you can never have because your bones could never carry the extra weight.  You worry that your significant other doesn’t have the strength to love a bitter, unemployable, cripple. You walk one foot in my moccasins and then you can tell me to lighten up! Thanks for the well wishes on my graft.  If it doesn’t work I am surely doomed and all my worst nightmares will become reality. Barbara

Response:

I am due to have surgery May 28th, and will have to have IV steroid supplementation.  Does IV hydrocortisone cause avascular necrosis?  Do you have any medical references on this? Thanks Bill Lazar Bill Lazar Paetzold Square Bass Recorders 1377 Bluebird Ct. Sunnyvale, CA 94087 (408)737-8228 (phone & Fax)

Response:

- Hide quoted text — Show quoted text – I keep reading post after post referring to joint problems from long term, high dose prednisone use. It takes ONE DOSE OF IV PREDNISONE to give someone avascular necrosis! That is all! Avacular necrosis is basically bone death.  It hits the hips, knees, ankles first.  It is horrid.  If you have joint pain and you have had one or more dose of IV prednisone I urge you to see an orthopedic surgeon.   Do not listen to misinformed GIs and know-not-it-all posters.  All it takes is ONE DOSE! I know what of I speak.  I’m having experimental bone grafting done on June 7th on my right knee.  If it works we’ll try the left.  If it doesn’t it’s a life of terrible pain, wheelchair use, unemployment, and possible confinement in a nursing home for me. Have an MRI done.  If you don’t get avascular necrosis WONDERFUL!  But if you have it and don’t get diagnosed early the damage is irreversable! Barbara Diehl

Thanks for the input. But that is not to say that long term steroid use does not cause joint problems too. Lighten up. Good luck with your graft. I hope it helps. Roy

Response:

I keep reading post after post referring to joint problems from long term, high dose prednisone use. It takes ONE DOSE OF IV PREDNISONE to give someone avascular necrosis! That is all! Avacular necrosis is basically bone death.  It hits the hips, knees, ankles first.  It is horrid.  If you have joint pain and you have had one or more dose of IV prednisone I urge you to see an orthopedic surgeon.   Do not listen to misinformed GIs and know-not-it-all posters.  All it takes is ONE DOSE! I know what of I speak.  I’m having experimental bone grafting done on June 7th on my right knee.  If it works we’ll try the left.  If it doesn’t it’s a life of terrible pain, wheelchair use, unemployment, and possible confinement in a nursing home for me. Have an MRI done.  If you don’t get avascular necrosis WONDERFUL!  But if you have it and don’t get diagnosed early the damage is irreversable! Barbara Diehl

Response: