In the 7 1/2 years that I have had UC, I have been on prednisone almost the entire time, with only a few months of break maybe one or two times total. Currently, I have been on prednisone for over 3 years straight without being able to ween lower than 15 mg without flaring. Currently, I am back up at 40 mg.

When I last had my Dexascan to check my bones, it indicated osteopenia, and that was over 2 years ago! Who knows how much worse my bones have gotten since then, and I'm only 26 years old! My joints ache and pop with everything I do.

My doctors know the prednisone is bad and keep saying "we need to get you off it" but then they turn around and keep increasing the dosage. It's so frustrating! It's part of the reason why I asked, a couple days ago, for contact info on a surgeon. I'm so sick of feeding my body all these meds that seem to be doing more harm than good.

I have an appt on the 6th to meet with a surgeon to discuss jpouch and k pouch, etc. I've been through the whole Remicade process, and now Humira, and still haven't been able to ween off the steroids. And I'm only getting worse.

Oh, and I once had a doctor who didn't even know that it is dangerous to not ween off prednisone, and she tried to get me to stop them cold turkey. I had to tell HER that weening is necessary....right before I went home and left a message for her supervisor about how retarded I thought she was. He, however, didn't believe that she had said that and insisted I must had heard her wrong. I wouldn't have believed it either had I not heard her say it; a doctor is not supposed to be that stupid.

Ugh. Done ranting. I HATE prednisone.

Hi K,
As you can tell from my frequent replies on this topic, I am very passionate about this subject.

I'm so sorry you're having trouble getting off of the Prednisone. The effects of the drugs are also why, after weighing the pros and cons, our daughter (19 at the time) decided against cyclosporine and went for jpouch surgery. She's 21 now, and digestively, she's doing great!

If, like you said: My joints ache and pop with everything I do, I would highly recommend that you request an MRI of any and every joint that is doing that, because Osteonecrosis (ON) will not show up on x-ray in the early stages. It really is better to know exactly what you're dealing with than to put it off, but maybe tackle that after you get through surgery if that's what you decide.

I can identify too, with the story of the doc who didn't know to ween you. We've discovered in dealing with orthopedic surgeons, that not many understand that MRI's, although expensive, are the best tool for diagnosing osteonecrosis. If you ever need more information on this topic or contact information for a leading ON surgeon, please feel free to contact me.

In the meantime, I sure hope your appt on the 6th goes well and that you've found a great surgeon to perform a j/k pouch, or the BCIR. Make sure you ask how many he/she has done...you want someone who has done many of them. My daughter's doc said "hundreds" and that made me feel better.

If you'll use the blue find button on the toolbar, you can search old posts for discussions on the various surgury procedures. Reading some of them may answer any questions you have, or give you valuable insight from others who have the j/k pouch as well as the BCIR.

There is a list of surgeons titled "Updated List of Surgeons" posted by Holly in the K-pouch forum that might also be helpful.

All the best to you as you make your way through all of this! Let me know if I can help, or if you'd like to talk to someone close to your age...my daughter's happy to talk to people going through it, she's just not into posting here. She also had two people who had jpouches visit her in the hospital while trying to make the decision for surgery which was incredibly helpful. Your surgeon may be able to put you in touch with someone near you that you can meet.
Elise

Killico,
I sent you a private message

Hello all!
I was on and off prednisone for 20 years. It saved my life. It stopped my bleeding ded in its tracks. I know it caused all kinds of other problems but I would be dead if it was not for that drug. Back before managed care they would put me in the hospital NPO and give me IV solumedrol to stop the flare for 2 solid weeks. Then I would go home and taper down for about 2 months until another flare came up. I would get anxious, depressed and just plain fat. There were really no other options and I went to the best--Daniel Present at Mt. Sinai and everyone in between.

The bottom line is that I am alive. I have osteopenia but I am not angry at the prednisone or the doctors. I am angry at an illness that I have no control over. If I had to do it all over agin, I would still choose my life. For that I am grateful and I am grateful everyday for all that I have.
Kate

I went through the regimen of drugs, including prednisone, and prednisone was the only one that had any effect. Luckily, I was not on it too long or at too high a dosage.

It came down to living with UC and taking prednisone or having the colectomy. No brainer.

My brother had uc several years before me. He has some joint problems, although he can still play tennis, he can't run nearly as far as when he was younger.

I agree that prednisone is a miserable drug.

I very much enjoyed this topic discussion.
When I was in Sweden in 1999 I discovered that the Swedes try not to put anyone on prednisone or cortisone unless it's very short term -- 3-5 days! The surgeons and gastroenterologists there were ready to take my colon out after 5 days. My American-trained, US-based doctor totally freaked out and called them and told them I was a slow responder to steroids. So they tried it for maybe 8 days, and then yanked my colon out. I knew a guy from grad school who from the first UC episode he was hospitalized, very sick, and on high doses of cortisone for 30 days (ending in surgery). I knew that it contributed to bone loss and necrosis of the hip, since my brother had that. But it still was a kind of culture shock to be in a country where the doctors were incredulous that anyone would use this drug very much to save a useless, disease, cancer-prone organ like the colon.

I also struggled with my intelligent Cleveland Clinic doctors about the use of entocort and other steroids, saying that i was worried about bone issues. they ignored me, literally, and then all of a sudden in 2005 they said,"quick, get a bone density test, the evidence is strong that even short term use of steroids can cause problems." It was weird hearing their urgency after years of them ignoring me. i felt intensely lucky that i passed the scan.

it sucks, but i think there's something about the american system. the gastro doctors' egos get tied up in us getting cured w/o going to the surgery side of things instead of focusing on what is best for us. the swedish system is filled with thoughtful, compassionate doctors because there isn't any money in the job. here, doctors also include those type, but the job also attract other types.

take care and hang in there!
-michelle

Dear Rick,

How was your AVN diagnosed?

Hi Rudolph,
I don't know if Rick will reply, but I wanted to tell you how my daughter's AVN was diagnosed, just so that if other's have these symptoms, they should request an MRI ASAP, because early diagnosis is essential to getting treatment to prevent bone collapse and or halt the disease progression.

My daughter's right knee started swelling, was painful, and there was a loud popping, clicking, grinding noise when she stands or sits. Her primary ordered x-rays which showed nothing, the PT that he sent her to was unhelpful, so he sent us to a Rheumatologist. Thankfully, her rheumy ordered an MRI which showed "bone infarcts" or areas of dead bone. Had we not had this done, this disease would still be undetected in her as she's not really experiencing the extreme pain/swelling that she initially had which came and went.

We then did a full body bone scan which showed increase uptake in several joints, but it wasn't until we had MRI's of all major joints were we aware of the extensive nature of her ON/AVN. Her's is bilateral in several joints, so if you've been on high dose steroids, and they find it in one joint, it's most like bilateral as well..not always, but many cases present this way. (She has since been through core decompression surgery on her rt shoulder, both elbows, both wrists, both knees and both ankles.)

The thing about this disease is that it often goes undiagnosed/misdiagnosed for years until the bone starts to fracture, break and become painful. Many (from the ON/AVN group I belong to), because of the pain they are having are sometimes thought to have fibromyalgia or RA and if they have IBD, some think they have enteropathic arthritis, even though many tests come up negative. MRI's are really the most sensitive test for this bone disease, and if you find that you have it, it's really important to find an orthopedic surgeon who truly understands the nature of the disease and specializes in treating it.

Dear Elise,

Thanks so much for your reply.

Hi Rick,
I have not been diagnosed with the disease but I am 48 years old and have severe right hip pain. Mostley when I TRY to sleep but it does effect me more and more during the day. I to was on prednisone for about 2 years. I saw a bone and joint specialist abouty a year ago and he said bursitus altough he did'nt seem real sure what it was. I am just trying my best to tolerate it because I am terrified of surgery. I also have chronic pouchitus. Good Luck
Marie

I agree! Prednisone is the devil incarnate. Okay, maybe that's a little severe, but when I was diagnosed with Crohn's, I explicitly told my GI, "Do not offer me Prednisone. I will never take it again." He hasn't so far! ha!

OK, now after reading this thread I'm getting worried. I was on prednisone on and off and for almost 2 years could not wean off it without a flare up. I knew that it could affect my bones. I was told by one doctor- not my GI - that I would need a hip replacement like Bo Jackson after being on prednisone so much.

It's been 15 years since I've been off of it. I did have a bone density scan around ten years ago that was OK, but does that mean it didn't affect me? Or can AVN show up 15 years later? I do get a popping in my right shoulder and right knee when I do Pilates, that started after I was doing Pilates for a few years.

SueLynn

Sue, you should be fine. AVN is the exception, not the rule. But, you should know that it can crop up much later. Just do your weight bearing exercise and investigate any pain that seems unexplained.

Jan

Wow.I just came across this, just wanted to put my input in..I had been on prednisone for almost 22 years off and on..I was dignosed with RA then. Years later I went into remission and then I got posion ivy, then it was sinus problems-had sugery(which doctor messed up the shape of my nose from)and then the last 5-6yrs with the UC. It was just one thing after another by the time I get off of it some other doctor would put me back on it...yea it started off with the low dose but right before my surgery the "butt-head" GI doc had me back on it up to 60mg orally, and he knew I hated it..it was like he liked tourting me. The surgeon was surprisly distrubed that he had me on it that high for such a long time(it was several months too). Since my Remicade treatments only lasted abt. 7mths he didnt know what else to put me on...
Then sometime 2007 my daughter all of sudden got these bumps and sores on her legs and she could barely walk and was in so much pain it was horrifing..So luckily she was referred to a RA doc. but then he thought since I was recently dignosed w/UC thought she might have it too well..low and behold she went thru all the GI test and came back negative but was on prednisone herself for couple times(these doc def. didnt want her on it long at all-thank heavens) but she is currently taking COLCHICINE cuz what she had was RARE its called ERYTHEMA NODOSUM..doctors around here was shocked cuz they never seen it except in the books..but the weird thing was she just had a tooth pulled and that is 1 of the causes of this disease along with having an autoimmune disease..so I pray that she never ends up with the IBD either because of me having the disease with the RA and all that other crap...but I always blamed the RA meds I was on for my UC cuz I was on everything and my RA count wasnt that high either back then for me to be on ALL the MEDS i was on..

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) being the most recent and scary

Funny you mentioned the loss of tooth thing. I lost a tooth too due to a afiled root canal, but swore it happened from all the prednisone I was on. It cost me over 5000 out-ot-pocket for an implant. I also had a really bad case of the hives about 4-6 months ago for several days which I never had before and it was really scary.

I was on tetracycline for a couple of years before my UC, but it also runs in my family as my dad had it. I pray my kids do not get dealt the nasty hand with this disgusting disease.

How are you doing since your recent surgery?

I hope you daugher is doing OK.