Avascular Necrosis after steroids for HG

[alisonc8]

Does anyone know anything about this condition? I have had four months of severe pain in my hip and finally got to see the orthopedist today, after 10 weeks of physical therapy that didn't help at all. I have to go for an MRI to confirm, but the doc is fairly certain that I have Avascular Necrosis. He said it is quite common among those who have been on long courses of corticosteroids (and I was - for HG). Basically the blood supply to the bones is inhibited and the bones "die". Bones can repair/regenerate themselves, but without good blood supply, they can't regenerate fast enough and so it gets worse and worse.
Treatment options are minimal - pain relief and eventually a hip replacement - but I don't want to live like this!
Any thoughts, info - I'd love to hear them
Alison
Laura 10/25/96
Erin 3/17/04

[MamaLily]

Alison -

No, I have not heard of this condition. I'm so sorry that you have to face this now after all that you went through during your pregnancy. Are you in severe pain all of the time? Can your bones regenerate faster now that you are not on steroids any longer? Please let us know what you find out about this condition, and I hope you start feeling some relief soon!

- Anna

[alisonc8]

The pain comes and goes, but it is usually there in some form. I did some reading and found out that the blood vessels that supply the bones are what "die" and so the bones don't get enough nourishment. The blood vessels don't regenerate, and so while bone is being regenerated, it doesn't live long because of poor blood supply.
Treatments appear to involve either bone grafts (with blood supply) or joint replacement - there isn't much else to be done. I'm looking for clinical trials now, since neither one of those treatments is appealing!

This is a good reason not to take the steroids for a moment longer than you have to...

[megansmom]

My mother had this problem, but she had been on prednisone off and on for nearly 20 years. Wish I could offer something more encouraging, she did have to have the hip replaced. You've got it after only months? I'm so sorry to hear it.

Cathy

[alisonc8]

So to update ...
I had surgery on both of my hips almost 3 weeks ago. The procedure is called femoral head resurfacing - basically they put titanium caps on the balls at the ends of my femurs. Both of my femoral heads had collapsed due to the avascular necrosis.
My surgery was done at Stanford University Medical Center. Medical students visited me indroves and so I got to educate and inform each and every one of them about the devastating effects of HG, as well as the long term impact of steroids on a body. Without exception, none of them had EVER heard of AVN being a result of steroid use - and they had all been through a pharmacology class where steroids were discussed at length and in great detail.
I do think it is very important that HGers who are considering steroids as a possible course of treatment be aware of this risk. AVN isn't a big deal if it is diagnosed and treated early, but we all know that we have to be proactive in seeking treatment, or we don"t receive the treatment that we need.

[teddi]

Alison,

I have often wondered if the impact of severe HG doesn't exacerbate joint problems. When we get malnurished our body will start raiding our organs and tissues for what it needs. Add steroid therapy to the equation and maybe it speeds up the possible effect of necrosis.

I have always been hypermobile, but after my first pregnancy (severe HG and I did do a round of steroid therapy) I had joint pain and what my drs have said is probably early onset arthritis. It started immediately after my son's birth.

Do I recognize you from the babycenter boards? If so, hello!

[alisonc8]

Hi Teddi,
- yes I also post on Babycenter, but I don't recognize your name... ?

I do think that the state of malnourishment our bodies get into when we have HG contributes to conditions like arthritis, but I'm not sure if anyone has ever actually studied it.
What I have is a direct result of the steroids though. The surgeon (and his entourage of residents, fellows and medical students) said that there is no question in his mind that my condition was caused by the steroids.
AVN primarily affects hip joints, and shoulders are sometimes involved as well. Since shoulders are not weight bearing though, the level of disability is much less.
So, if you have hip or groin pain, and have used steroids as part of your HG regimen, have the pain evaluated by an orthopedic surgeon and be sure that you let them know that steroids are a part of your recent medical history. They should order an MRI to rule out AVN immediately.

My family doctor was clueless. So much more could have been done if I hadn't been given the run around for months prior to seeing the ortho.