Avascular Necrosis (bone death) in both knees, both ankles, and both wrists

[butt-eze]

I have been diagnosed with avascular necrosis (bone death) in both knees, both ankles, and both wrists. Usually I'm ok with this but I'm a little grumpy about it right now.

I feel like I'm the only person who is dealing with these extreme side effects from prednisone. I was on high doses of steroids for two years. At one point, during hospitalization, I was on a full gram of IV steroids.

Has anyone else been diagnosed with AVN? I thought for two years that I just had arthritis pain from Crohn's. I'm glad to know what it really is but not looking forward to 5 more surgeries (I had one surgery last December).

I had a proximal row carpectomy in my left hand. I will have my right ankle fused April 13. Two months later I will have surgery on my right wrist. The order after that is undetermined. I will need both ankles replaced too.

I'm only 30 years old!

:depressed:

 

[misscris]

Geez Amy. So sorry to hear about your recent troubles. I'd be grumpy too and I think you have every right to be upset!! So what exactly is going on with it all? Just the bones breaking or disintegrating or what? I haven't heard of it, so thought I'd ask.

I don't have much to offer with all this, except to just offer support and say hi. Being a fellow Washingtonian and all.

 

[butt-eze]

According to the docs steroids are just plain bad for your bones. Avascular necrosis just means that the bones are not receiving their blood supply. My right hand had a small bone (scaphoid) that completely lost it's blood supply. Without removing this bone and two others the bone would have crumbled and needed to be removed. Nothing life threatening. Just very painful.

Thanks for asking. Where is Washington are you?

 

[misscris]

Ouch. That does suck. Sorry to hear that Amy, but hopefully it gets fixed up soon and you can be painfree again.

I'm near Everett/Lynnwood area.

 

[Rob]

Bugga
pred is such a useful drug for us crohnies but geez the side effects

I'm sorry you hav landed a bad one there

 

[Astra]

Hi Amy

Bloody Hell! That's a bit scary! So sorry this has happened to you at such a young age too!
I need to get off Pred a.s.a.p. !
Take care and feel free to grumble, you have every right to!
xxx

 

[whysoserious]

I'd say you have every right to feel grumpy! I'm absolutely terrified to take Prednisone, but I'm sure my doc will want me to take it. Good luck and I hope you feel better soon.

 

[Creepy Lurker]

I despise that drug

It works incredibly well (for most of us), but sometimes it just seems like we're replacing one set of symptoms with an equally crap set.

 

[butt-eze]

I do feel like prednisone was a wonder drug for the two years I took it. I didn't enjoy the night sweats or weight gain but the relief of pain was unlike anything else.

I feel like we are fighting a losing battle.

 

[Crohn's 35]

Butteze you are only 30 oh my. I am on a quick taper and I cant wait to get off it. My Gi doesnt like it but it is the only thing that works! I had a recent bone density test done and I am fine. I wasnt taking calcium for awhile because I am prone to kidney stones, but when we are on pred, it reduces the chance of that big time so now I am on gelcap calcium. I heard that if you get on the right calcium and vitamin D it can reverse some bone loss? I am so sorry you are dealing with that. I wondered why we havent seen you for so long. Big hugs ok!

 

[LadyVik]

So sorry to hear that. Side effects from Pred are the worst. It has effected my teeth, skin, hair, mood, weight and has given me Crohn's associated arthritis?! Don't really know what that is though? Why did they keep you on it for so long? My cousin has been on Pred for about 3 years now, they're tapering him off onto another steroid but he has bad bones, I'm not too sure what is wrong with them though? And he has problems with his kidneys. It sometimes makes you wonder is the "wonder drug" worth it??

 

[butt-eze]

My bone density tests are actually normal. That is what is so frustrating; there is nothing that could have been done.

 

[Fruitcake]

Oh Amy, what a thing to have to deal with on top of everything else!

I thought I had it bad, I was always moaning about getting lots of fractures after getting osteoperosis but I'm starting to think I had a lucky escape.

I met someone who developed cataracts after being on pred too, it seems so good when you first take it then it can do so much damage.

Lyndsey xx