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AVN or Osteonecrosis sufferers??

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Posted 3/28/2008 4:01 AM (GMT 0)
Hi All,

I haven't posted in a long time, but here I am again with a new problem I hope you can enlighten me on.  I have posted in the Arthritis and Chronic Pain forums (only 1 reply), but thought I'd try here too.

My daughter was recently diagnosed with Avascular necrosis (bone death) probably due to steroid use to treat her UC (didn't work, refractory and ultimately had a colectomy and jpouch...doing very well in that area)....but this new diagnosis is devastating!  I'm hoping to hear from anyone who has this and their course of treatment and how they are managing with this disease.  I'm so worried about her becoming crippled by this and the pain she will suffer.  I'm reading and researching like crazy to educate myself on this and we've had 3 doctors look at her xrays.  All have said not much they can do, but I've located a specialist many states away from me and wish I could find someone closer.  Looking to share ideas with someone who's walked through this fire and can help us in any way.  Thanks so much in advance!

 

Posted 3/28/2008 4:11 AM (GMT 0)
What joints ae affected?

After being on Pred and then Entocort for too long, I developed avascular necrosis in my shoulders. The left was mild and seems to have improved with rest. The right shoulder became terribly painful, the worst pain I've ever had (I have a really high pain tolerance.) My orthopedist first did laparascopic surgery and did some "channeling" to try to increase the blood flow to the head of my humerus, but that didn't work. So a year ago, I had surgery to remove the dead tissue and had a new type of prosthesis implanted. Instead of replacing the whole ball of the humerus, it just replaced the area of the defect. After six months of hard rehab, my shoulder has not quite full strength or range, but is functional. If I were 20 years old instead of 61, I'm sure I would have completely rehabbed back to normal.
Posted 3/28/2008 12:11 PM (GMT 0)
Hi Judy,
Thanks for your reply! Did you get xrays or MRI's for any of your other joints? The joints that are affected are both knees, her right elbow, and possibly more (bone scan identified right ankle, but it's not showing up on reg xray yet). The doctor that we found many states away has asked that we get more xrays and MRI's of both hips and shoulders because he said that if it's in both knees, it's possible it's in other common places so just want a thorough look with imaging. Her right elbow hurts her pretty badly and she too has a high tollerance for pain. What medication do you use for pain? Because of her jpouch, she cannot take NSAIDs and narcotics are too strong since she still needs to be coherent to get through her classes.

I'm so angry that this has happened to her sometimes I think I'm going to implode just worrying about what her quality of life will be. I'm thinking about talking to a lawyer... Have you looked into that at all? I heard from someone yesterday that had Remicade treatments and after the remicade treatments, her pain went away and she cancelled her hip surgery. Does the Remicade seem to help your pain any?

Sorry for all of the questions...it's just nice to talk to someone else who's dealing with this.
Posted 3/28/2008 12:52 PM (GMT 0)
I had MRI of the shoulders only. Since I haven't had any unusual pain in other joints, I concentrated on the shoulder. For me, the pain of AVN was quite distinctive and different from my normal UC-related joint and muscle pain. I took tylenol for the pain and Percocet at bedtime so I could get some sleep. I still had a lot of pain with the tylenol. Now I don't have pain except a little when the weather changes.

I never considered legal action because basically no one did anything wrong, so there was no one to punish. The potential side effects of long-term steroid use are well-known and published all over the internet. My doctor and I kept trying to taper the steroids, but I'd get so sick I had to go back up. At first I was angry at my body and the universe, but never at specific people. Any time you take medication, whether "natural" or pharmaceutical, it's a crap shoot. They all have potential side effects, and you balance those against the gains. AVN is not a common side effect, your daughter and I just got lucky.

Remicade has been remarkable for my UC, but I can't tell that it helped either the AVN or my usual UC-related musculoskeletal pain.

I would think there should be relief for your daughter from surgery if the pain is debilitating. They do knee, hip and shoulder replacement every day. I don't know about elbow and ankle, but I'm sure a good ortho surgeon could tell you. I'm really sorry she's going through this, and hope for relief for her and you.
Posted 3/28/2008 4:00 PM (GMT 0)
Hi Judy,

I just wanted to tell you why I'm angry...

  "The potential side effects of long-term steroid use are well-known and published all over the internet."

The side affects are published and I combed through the medication product monograph when she got the meds, and searched the internet, but none of the information I found said anything about a person's bones dying...osteoporosis yes, but not AVN.  I thought ok, osteoporosis, we'll just give her extra calcium and pray that her bones will be ok.  In her case, she had one long, unrelenting flare and the steroids were oral at first, then IV, so at that point, she was bleeding to death and we were just trying to save her life.  And in all honesty, we'd have said yes to the pred, but now I feel like we were not given the CHOICE to be well informed and feel cheated by the medical community. 

As her mother, it's my job to care for and protect her and if this were a naturally occurring disease, I guess I'd have an easier time accepting it, but right now, I guess I'm just trying to get through my anger. 

Anyway, thanks for letting me vent and for your support! 

Posted 7/11/2010 10:02 AM (GMT 0)

Hi

This is going to be an absolute shot in the dark considering you posted so long ago. I really hope your daughter is doing well since the necrosis diagnosis and all else ailing.

Im a 39 year old and from Ireland. I have in the past six months been diagnosed with Avascular Necrosis - Osteonecrosis, both Knees and now I fear possibly left elbow. Im sure I don’t need to detail descriptions of the pain caused by this thing and really just have a couple of questions for you.

How is your Daughter and what have they done for her regarding her knees/elbow etc?

　

David.

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