Hi, Kjeane, if that last comment was for me. I had my surgery act.9-30-08 and was 2 go 4 TD on 12-30 but had a leak in the pouch so now its just waiting. I recently went back 2 wrk and only lasted 2days and was sick (guess the flu)and then went attempted wrk and act. was in ER 4 7-8hrs Fri. Just for them 2 tell me it was prob. the flu or their famous line "well U did have alot of done 2 U recently"..So yea I had mentioned in prev. forum abt. this pain under my right breast which only Really HITS me at nite, not just after eating. So Im not sure if its the gallbladder..Husband/Daughter think I overreact but THAT PAIN is REAL..
So only DRUGS now is VICODIN..yahoo! Those kinds of drugs dont do much 4 me like some people.
So thanks for asking..

Diagnosed w/RA-1988
Diagnosed w/UC-2007 but bleeding for 5yrs straight
Surgeries-Abt.8 differ' kinds(u name it)
Colectomy/partial hysterectomy(done the same time)9/30/08 and scary

SueLynn,
I keep an eye on this thread and I'm glad to see that it's still being read because the risk of osteonecrosis (ON) aka avascular necrosis (AVN) isn't given the attention by the medical community that I believe that it should.

I've given my daughter's history in my past replies on this thread so I won't rehash, but I would suggest that anyone who has been on high dose steroids for longer than a couple of months should be suspect if they experience pain. Those joints should be examined by MRI which is the most sensitive in detecting it. I'm not trying to scare you, but to inform that while a bone scan is beneficial, an MRI is better.
And although I have tremendous respect for Jan and all that she brings to this site, I have to respectfully disagree with her that AVN is the exception. My research tells me that 7,000 people a year get AVN from Prednisone and although this is considered rare by the NIH standards, black box warnings come on medications that have adversely affected far less numbers of consumers. Stronger warnings should be in place so that consumers know what to look for so they can seek early treatment from an orthopedic surgeon who specializes in the treatment of Osteonecrosis, but because the warnings are not there yet, I will continue to try to bring awareness to this situation. I'm willing to give any additional studies or information that I've found along my yearlong journey with this disease. Please PM me if you'd like any additional information.

Elise, I really wasn't trying to minimize the alert regarding the terrible complication of AVN. What I was trying to point out was that by far, most people who take prednisone, even in high doses for long term periods, do not develop AVN.

So, yes, it is important to be aware of symptoms to be watching for that should be investigated, but I did not want people assuming they had a ticking time bomb as far as their bones go. The main concern is that there really is no timetable that you can say "enough time has passed so I can relax." We will need to always be vigilant because once we have taken those high doses or long term use of prednisone, the potential is there.

Jan

Hi Jan,
I absolutely wholeheartedly agree with you and in no way want to undermine what you said previously...God knows that you were one of the first ones to wrap me in a cyber hug when I first found out about my daughter's disease. It is devastating, but here we are a year later and time has a way of giving us new perspective. Although I still struggle with accepting that this is her fate, there is treatment and surgeries available that will help her live a good life and that we are more than our failed bodies.

That said, one thing that continues to eat away at me is that, although I cannot dig up proof of my suspicions other than having feedback from a pathologist that suggests I'm on the right track, I believe that the numbers of reported AVN is far fewer than it should be because of the insidious nature of this disease. He told me that after examining joints that have been removed for replacements, that many that are diagnosed as "arthritic" often have necrosis in them that is overlooked.

Like you said, it can be years before it "crop(s) up." Research tells me that the damage is done early on with the delivery of steroids, and it may take up to 10 years after the cessation of the treatment for it to present itself...so a patient is potentially misdiagnosed as having a multitude of other things going on (patellarfemoral syndrome (as in my daughter's case), RA, fibromyalgia, extraintestinal manifestations of UC, etc) if the swelling, pain, clicking noises aren't taken seriously and investigated with an MRI as it will not show up on x-ray in the early stages...but itis there, slowly deteriorating to the point that it's finally discovered by MRI years down the road. Even then, the joint may be so bad that it may be classified as Osteoarthitis and the entire diagnosis of Osteonecrosis is overlooked.
MRI early detection:
http://www.springerlink.com/content/pwkrlja22cvm6npr/
http://www.springerlink.com/content/m74tm7640156836j/

I know this may be scary to those who read it. My intention is not at all to scare people but to raise awareness for those who have taken Prednisone in high doses. You are right in that not everyone who has taken Prednisone gets AVN, but had we know that it was even a possibility, we wouldn't have waisted time with a physical therapist.

Here is a link to a study presented by a specialist Dr. Michael Mont who specializes in the treatment of Osteonecrosis (he also happens to be my daughter's surgeon, so I highly recommend him). It's very comprehensive for anyone diagnosed with AVN/ON.

http://www.ejbjs.org/cgi/content/full/88/5/1117

To highlight my point of early detection with MRI, the report states that even a bone scan does not detect the ON early on:
"
"Of thirty hips with a normal appearing scan, twenty-two were found to have osteonecrosis of the femoral head on the magnetic resonance image."

So I say arm yourself with information and learn as much as you can so that you can be your best advocate if you suspect anything going on with your joints. If your doctor doesn't want to do an MRI, copy that last study and show him/her this study.

We were blessed to have a rheumatologist who suggested an MRI "to rule out anything mechanical" and that is when we found this. We sought treatment from the MAYO clinic who told us nothing could be done for her until her joints collapsed...how devastating is that for a 21 year old..and to be handed authorization for a handicapped tag for her car. I trusted my instincts and kept looking until I found a specialist who is passionate about preserving the joints of ON patients. He has given us hope and isn't that what doctors are supposed to do? His success rate and all of my research led me to him and I believe it isn't false hope. I know this is long, but thank you so much for taking the time to read this.

Ok, I am reading this thread, and even though I posted to a new thread that is similar to this one, I am wondering if the joint pain I am feeling now is a result of 6 years of UC, prednesone on and off for 4 years or a combo of both and / or the other meds I have been on. I am also wondering what is considered a "high dose" of prednesone? I started off at 40, stayed at 40 for about 3 months, weaned off totally in about 6 months, was off for a year and a half, then went back to 40 for 2 months, weaned down to 5 after 4 months, then went back up to 60 for about 6 months (or something like that...) until my surgery.

Diane, you have been on high dose/long term prednisone several times.

Anything over 20 mg is high dose.

Anything over 4-6 weeks is long term.

Avascular necrosis generally hits in the hips or shoulders, then also in the knees and ankles. Typically is is in one joint at a time, but it can occur in multiple joints.

So, if you think that perhaps your joint pain may be AVN, it is definitely appropriate to discuss with your doctor.

Jan

Will do - thanks!

Hi all,
I have looked at this site for a long time now, but just now became a member. After just running onto this discussion, I had to put my 2 cents in.

I was diagnosed with UC when I was 19 after 2 years of stomach aches and bleeding. From the very start my doctors always told me that Prednisone was not to be taken for very long, (which I am now VERY GRATEFUL for) and when I could not get below 30-40mg without being miserable, (sometimes being as high as 100mg)and being on it for 9 months (with 4 hospital stays with solumedrol through the IV), my GI really started to push surgery, solely to get me off the prednisone (and because nothing else was working).

I had my colon removed with j-pouch and ileostomy creation in May 2007, but the day after I came home from the hospital, ended up back in the hospital with a blood clot in my liver that had traveled there from my lungs (I had not been able to breath very well for the last three days.) After 6 more days in the hospital on blood thinners, I went home, only to end up back in the ER twice in the next three days full of pain and was very weak. The second trip back entailed a fun ambulance ride 3 hours away (where I had had surgery) and then right in the ICU. The diagnosis was that my adrenal glands were failing due to my starting to go off the prednisone (and I WAS going off it slowly.) My doctors totally attributed everything to the prednisone, and I was afraid I was going to have to take a low dose of predisone for the rest of my life if my adrenals didn't kick in. thankfully they did, and I was able to get off it. I celebrated the last day I took it!

I guess my point is, any medicine taken long term should be researched thouroghly and know what you are getting yourself into. But I think I was just lucky to have doctors who wanted to get me off of it. If they hadn't, I would have been just like Rick and so many other people and been completely clueless of what was happening to my body. I have noticed that for the last several months My ankles pop, sometimes really loud, and it hurts when it does, but I just attributed that to cheerleading in high school. I am just so thankful for this site to bring my awareness to this issue, so now I know to keep an eye on my bones! Sorry for the rambling, I guess my whole point of this post is to say thanks to all your input, and to say that I agree: Prednisone stinks!

Diagnosed w/ UC June 2006
J-Pouch May 2007
TD August 2007
Pouchitis Nov. 2008 and Jan. 2009

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

quote:

I guess my point is, any medicine taken long term should be researched thouroghly and know what you are getting yourself into.

Hi Jill,
I'm so glad you've joined the discussion, and you're right, you should research and know what you're getting yourself into, but with Prednisone, the risk of osteonecrosis is not disclosed unless you've had an ethical doctor who discusses this risk with you, so many who take it are not informed of the risk, nor the side effects.

"My ankles pop, sometimes really loud, and it hurts when it does, but I just attributed that to cheerleading in high school. I am just so thankful for this site to bring my awareness to this issue, so now I know to keep an eye on my bones!"

You're wise to keep an eye on them. Not to scare you, but my daughter's knees started popping/cracking/grinding sound...and as I stated previous, has severe osteonecrosis in multiple joints after only 4 months of Prednisone. It would be wiese to request an MRI if your ankles become swollen or painful or continue to produce a clicking/popping sound.

As I've said previously, anyone who has been on high dose prednisone, should request an MRI of any joint that they experience continued pain with. Osteonecrosis can often lay silent in the body for years after treatment with steroids. Thanks for listening.

Hi Elise,

Thanks for replying. You are absolutely right that people are not told of the risks of osteonecrosis with predisone. I certainly wasn't, and I have a very good doctor. I was not trying to insinuate that it is a person's own fault if they didn't know about osteonecrosis, because I certainly didn't, but just that its tragic that these things happen to good people who had know idea, (which I think is probably all of us).

I don't know what is up with my ankles, but the popping has been going on since after I had surgery, and when there is a lot of popping in a short period of time, they tend to become very sore for the next few days, so I will definitely ask my doctor about it. I am very sorry about your daughter, I hope that things will turn out ok for her. She is in my prayers! And thanks again for bringing this issue to my attention!

Diagnosed w/ UC June 2006
J-Pouch May 2007
TD August 2007
Pouchitis Nov. 2008 and Jan. 2009

You're welcome Jill

>"I certainly wasn't, and I have a very good doctor. I was not trying to insinuate that it is a person's own fault if they didn't know about osteonecrosis, because I certainly didn't, but just that its tragic that these things happen to good people who had know idea, (which I think is probably all of us)." >>It's ok...I didn't take it that way. It's just unfortunate that the consumer cannot trust that they are given all of the information that they need to be their own best advocate so many people are blindsided and feel duped by the medical community when something like this happens.

If you do decide to have your ankles looked at..don't forget...MRI ok? That's very important...ON will not show up on an x-ray in the early stages.

Thanks for your prayers Jill. She'll be ok. I'm encouraging her to take every opportunity to have fun in life because I know there will come a time that pain will keep her from enjoying things she's doing now. We've accepted this and are no longer asking the "why" questions but trying to put our energy into being advocates for others.

Some people might get tired of me talking about this, but this has become near and dear to my heart. This is my service and will continue to be. I'm talking with the FDA and anyone else that I can get to listen. My goal is to get a stronger warning label on Prednisone to reflect this risk. Again, thanks for listening.

Elise,
I think it's awesome that you are working so hard to tell other people about this. There definitely should be a stronger warning label on prednisone.

And I will remember to get an MRI...Thanks again for you help!

I don't say too much very often but I have to agree with alot of what Jan is saying. I have, in the past, been on Prednisone for long periods of time (2 years+) and large doses (up to 80 MGs) and to this day, have never had a lasting side effect. Yes, I gained more than 30 pounds in two weeks and didn't sleep for days and ate like a horse but that has been the worst of it - so far. The first time I took it was 1983 when I was diagnosed with UC and the last time I took it was 1991 when I got my j-pouch. I consider myself extremely lucky. I follow my dr's advice and have a bone scan annually along with my mammogram and colonoscopy.

Prednisone is a nasty drug but it helps a bagful of diseases and conditions. It, along with many others, has some really nasty side effects. Way back when, before the Internet, you would have to trust your dr. and pharmacist to give you all the information available. And you could get the information from the pharmacist even if the dr wasn't willing. The information was available if you asked for it. You just needed to read the information that came with the prescription. Nowadays, a booklet of information from the pharmacy is stapled to any prescription you get. If the FDA does put a stronger warning label on Prednisone, are people really going to read it? How many of you are guilty of not reading the information that comes with your prescriptions? Do you always follow your doctor's advice when it comes to diet and exercise?

The bottom line is - you have to be an informed consumer no matter what the subject - toys from China, peanut butter or even the drugs we take. Ask questions and then ask some more. Talk to all of your healthcare professionals - doctors, nurses, pharmacists. And remember - if you don't like what you are being told to do or take, seek a second or third or fourth opinion. No one forces you to take anything. You should never be afraid to stand up for yourself and if the doctor wants to argue of gives you the "I am God" crap, see someone else.

This is a great forum and there are several more out there that provide real-life advice from the trenches - the people who live this stuff everyday and I am grateful to you all.

This is such an evil drug. My ENT wants to put me on it for a sinus infection and just the mention of it sent me into a flood of tears. Never again no way. Oh, and 9 years ago when I went on it for UC my GI told me that I would not experience any side effects. It was not until I came onto this board did I find out all it has to offer you. As sick as I was when they put me on Predisone I was even sicker,still had to have surgery and 2 years of problems after from it. I even lost weight while on it and it left me with a little present of osteoporosis.

I wish I had found this web site a year ago. I was diagnosed with UC, I received the usual high dose of the dreaded Prednisone, and now a year later I have just received my new left hip, and I am just waiting for my right hip to fully collapse to complete the set. I am only 40, I feel Prednisone ruined my life and it seems as though no one can be held accountable. If I had been informed of the risks of Prednisone then at least I would feel that I had no one to blame but myself, but I was told nothing, my Dr. took it upon himself to play "GOD" with my body and criple me at a young age. As you can tell I am just a little bit bitter, but I see now that I am not alone. I can not believe how many peoples lives have been ruined by this drug, how there is NO communication between the Dr. and patient as to the risks involved in taking Prednisone. It is hard to believe that the good could out weigh bad, cause from what I have read there is a lot of bad.