Prednisone- A cautionary tale

 I want people to beware of Prednisone. I am 44 years old and Female. I was extremely athletic, used to run 5 + miles per day. No health problems before the Crohn's diagnosis 3-4 years ago. When diagnosed and placed on medication for minor bleeding due to Crohn's colitis, I became very ill and started bleeding very heavily and was placed on Prednisone 40 mg then a taper after a few weeks. Did that a few ( maybe 2 or 3) times over a time frame of about 6 -8 months and was on IV steroids while in the hospital for 4 days. I was finally prescribed Humira and after a month I stabilized. Never again did I have to take Prednisone. That was 3 years ago. about 3 months ago, I started having "restless legs" at night and put it off on my busy lifestyle. Finally when I was limping most of the day, I went to my Dr. who diagnosed AVN (avascular necrosis) of the knee and he told me this WAS caused from the Prednisone. Avascular necrosis causes a part of the bone to die at the joint. It dies from the inside, eventually causing the entire joint to collapse. This can happen in one joint or in all your joints. In my case, so far, we know it is in my left knee and possibly my right but my hips have been MRI'd and they are clear, thank God. I just had surgery on my left knee 2 weeks ago. They made two long incisions on each side of my knee and used a drill bit the size of my pinkie finger to drill multiple holes in my Femoral Condyle to "decompress" the bone then they scraped out the necrotic center of my bone and filled it with cadaver bone as a graft. This surgery has a low success rate but it was my only shot to avoid a total knee replacement.  I am facing possible multiple surgeries if it is in other joints or if this graft does not "take". If you are considering taking Prednisone, research AVN or osteonecrosis first. My Dr. never told me of this side effect so I am warning you all because I wish someone would have warned me. If it can happen to me, it can happen to anyone. Beware of this drug!

No calcium nor was I tested for a deficiency.

My doctor told me to take fish oil becuase it is good for the bones. I definitely developed a bit of arthritis from prednisone as well. Hopefully it doesn't turn into a situation lie you're dealing with. I haven't really been checked to find the extent of the bone damage.

I am sorry you're going through this. I do appreciate the warning. I think a lot of us need to be reminded of the dangers of prednisone.

WingZero- My Orthopedic told me that calcium supplements wouldnt have stopped AVN anyway. My advice is to make this drug a last choice because the side effects are for real and life altering.

Notsosicklygirl- I have been on liquid fish oil for several years and it has done worders for my Crohn's colitis symptoms but I guess we will never know if it helped my bones. Luckily my last MRI showed my hips clear of AVN but I have many other joints in my body and it can be lying quietly in any of them. Time will tell since this is a stealth disease without pain until it is nearly too late and the joint needs replacing.

Bostwis1- Yes, I agree!  I think you are making the right choice since you are steroid dependent. I wish I had made other choices than Prednisone before it was too late for my joints.

pmedic,

Thank you for posting this!

I was on both high doses of calcium and Fosamax; AVN ate up my shoulder joint. It isn't really caused by loss of calcium, but by loss of the blood flow to the end of the long bone, leading to death of the bone tissue. It's sort of like gangrene of the bone. We've had a number of members here and also from the Crohn's board suffer from this, and I do mean suffer. It's the most painful thing I ever had - 100 times as painful as my UC or a broken ankle.

Gidhike- If you have any doubt, get checked and push for an MRI because this cannot be seen in early stages on an xray. Also, if it is caught and treated early, there is a better chance for a successful surgery and the avoidance of joint replacement.

InSoFla- Thanks for suggesting it!

ByeByeUC- I wasn't on it long term and look what it did to me. Although I think some may want to risk it for relief of symptoms but at what cost? If anything, Dr.'s need to explain the risk involved for every pill swallowed. You think you are getting a reprieve from symptoms but you are possibly acquiring something far more sinister.

Judy2- Thanks for the input!

EvaLou- I dont know if it would show up on a scan. I hope you dont have to go on it again either! Good luck!

How fast did you go from the restless legs at night to limping?

Were you still on pred as it was getting worse or did it get worse and worse after you already stopped taking pred?

edit: I see you say

Somebody said...
Never again did I have to take Prednisone. That was 3 years ago. about 3 months ago, I started having "restless legs" at night and put it off on my busy lifestyle. Finally when I was limping most of the day, I went to my Dr. who diagnosed AVN

Doesn't really match up. So you stopped taking pred 3 years ago, and 3 months ago you started getting restless legs. So how did it take you a year to go from restless legs to limping if you only started getting restless legs 3 months ago?

edit2: reading up some more online it seems restless legs is a common side effect for Prednisone

Post Edited (GidHike) : 11/7/2011 5:07:23 PM (GMT-7)

Gidhike- My restless legs were intermittent at first, just maybe once a month then it over time it became more frequent and about 3 months before surgery, it got to the point when it was every single night and it would wake me up 4 to five times a night. It was easy to dismiss at first. I believe, but can't be sure, that it was the necrotic center of my bone that was giving me that sensation, not the drug itself because I had been off prednisone for years. But the Prednisone caused the AVN. The Left side of my left Femoral Condyle was nearly completely hollowed out from the necrosis.
What did you mean that it 'Doesn't match up"? I am waiting patiently for your answer...

Post Edited (pmedic) : 11/8/2011 6:06:50 AM (GMT-7)

pmedic I meant the time line didn't match up as given. Not doubting you or anything I was just getting really paranoid and worried that it might be happening to me! So I wanted to know the exact details

Gidhike-If you are having pain or any discomfort in your legs, please dont wait to get checked. I wish I could turn back time to the very first instance I felt anything weird in my legs! Better safe than sorry!! Keep us posted!

InSoFla- Thanks! I am hoping once I heal from this surgery I wont have pain anymore but only time will tell! I will be picking your brain in the future about some supplements though!

I have never had B12 Checked and really need to do so although I believe all my leg problems were due to the AVN. It has destroyed my joint at the knee. I just bought a B12 supplement, it is sublingual. What form of B12 do you recommend?