Lost the prednisone lottery

I got some horrible news on Monday. I have avascular necrosis (AVN). I had been working on some shoulder exercises with my physical therapist this summer and things seemed to be going great. I was back to rock climbing and looking forward to all kinds of winter adventures. Then, out of nowhere in October, I started to get this really deep, throbbing pain in the joint. Both my doctor and PT recommended getting an MRI. We were all thinking it would be a tendon issue. The MRI revealed an area of tendinitis, but also showed some unusual bone marrow swelling and some changes to the head of the humerus. My primary care doctor wasn't exactly sure how to interpret this, so she referred me to an orthopedist. I was still hoping a tendon issue might be causing all the swelling, but also had a unsettled feeling while I was waiting a few weeks to get in to see the specialist because the pain was worsening. When I finally had the appointment on Monday, I got the bad news.

The orthopedist thinks the AVN was induced by the prednisone that I took over two years ago for UC. Hard to believe a few 40 mg rounds over the years and then some IV prednisone for the emergency flare before my surgery would be enough to lead to this, but it was. For the vast majority of my 10-year history with UC, I was on no prednisone at all. My doctors never over-prescribed it and were always very cautious. I was just unlucky.

Basically, for reasons they don't completely understand, steroids can cause blood flow to stop reaching the bone in some individuals. This causes the bone tissue to die. This stopping of the blood flow can happen from other things too like trauma, but corticosteroids are a factor in many of the non-trauma cases. Researchers don't understand why some people get this from corticosteroids and other don't. Maybe some day they will have some sort of blood test so they know who shouldn't have prednisone. There is no cure or way to reverse the condition. Occasionally the necrotic areas will heal, but this is rare and usually they progress.

I am terrified of what this means to my active outdoor lifestyle as well as my outdoor career, but I guess I just need to take things day by day. Right now it is just in the left shoulder. It hurts, but I can still do everything (And I am!!! The time to live life to the fullest is now!!!). They can't tell me if or when it will progress, but if it does, I will need a joint replacement in that shoulder. If it stops with that joint, I will be overjoyed. I can handle one joint replacement. Lots of people have those and do great. Unfortunately, it can progress to other joints including the knees and hips and destroy them one by one. That's when things get pretty dire. I am trying to stay positive and hope for the best. There is absolutely no way to predict what will happen or on what timeline. If you think it is hard to find positive stories about ostomies... try looking for them with avascular necrosis. Very depressing. I finally had to stop reading people's AVN blogs as it was causing me to have serious anxiety. I am so scared and completely overwhelmed that I had to ask my doctor for some meds for the anxiety and also signed up for some counseling with someone who specializes in chronic illness issues.

It bums me out because I got off the scary IBD drug train fairly early and chose to have my permanent ileo with the sole purpose of not gambling with any more medications and their side effects... especially things that could cause joint pain or bone troubles. Looks like I lost out anyway. I know it could always be worse, but right now I am grieving this new diagnosis pretty hard. I really really hope that this progresses slowly or stops.

The roller coaster of emotions must be terrible. Please do not feel guilty if you need to take some time out for a pity party. You are such a strong person that I know you will figure out a way of living with this that will make us all inspired by your determination and grace. You are and always will be a fighter. We are lucky to know you.

    Wow, that is scary and I am so sorry you have to deal with this.  Makes me wonder what is in store for me.  I was on prednisone more often than not during the twelve years I suffered with ulcerative proctitis.  The two years prior to my surgery I was unable to get off prednisone.  It gave me full blown osteoporosis and I have three back fractures....one from a fall in 04 which is a compressed fracture of the lumbar spine and the other two I give credit to an over zealous chiropractor who was informed of my osteoporosis but at my  last visit with him cracked my back .  I should have sued the nimwad but I didn't know I had the fractures in my thoracic spine till a year later.  I have significant arthritis but I also have a family history of it and I am 66 yrs old.  I just feel soooo bad for you young people dealing with chronic disease.

Heidi, that's horrible, and so scary. I am so, so sorry. You made good decisions all the way along; we just don't have control of everything that happens to us, despite our best efforts. I think your lottery metaphor is right on.

I agree with the others -- have your feelings, including a bit of self-pity, cause this really isn't fair..... I'm sure that will burn itself out in time, and then to continue w/the gambling cliches -- I know you will play the hand you were dealt the best that you can.

I too wonder what's in store for me re prednisone. My gi always said he was more worried about the pred than the remicade etc., and I took way more of it than you did. But as you say, live life to the fullest, whatever that might mean at any particular moment.

And yes, stay away from blogs if that's not helping you. As we know, people with more trouble are more likely to be writing, so they don't necessarily give a picture of the milder end of the spectrum of possibilities for yourself.

Thinking of you. Hang in.