AVNMom08
03-31-2008, 10:43 AM
Hi everyone,
I'm new to this board, but am so glad I've found you! I've read through many of the other threads with the same condition and already feel like it's nice to be able to talk to those who've walked through this fire. A little background:
My daughter (21) was recently diagnosed with AVN/ON of both knees and her right elbow. I've contacted a doctor who specializes in protecting the joints before they collapse, contrary to what most docs do it seems. He wants to get additional xrays/MR's of both shoulders and hips just to be sure.
About a year an a half ago, she had a sudden, vicious onset of Ulcerative Colitis that eventually resulted in a total colectomy with continent reconstructive surgery. During that time, she was on steroids to try to bring it under control, which is where the AVN has come from. I'm so devastated by this and am so angry I just feel like I'm going to implode sometimes.
Has anyone here with AVN tried to bring legal action against the drug company for lack of disclosure? When she was put on Prednisone, I feel like I did my homework and consumed all the info in the product monograph that came from the pharmacist. I also read an entire book on it and nothing in there said she may get AVN/ON...it did say a risk of osteoporosis, but in my book, these are two different issues. Even the NIH webpage and the official Prednisone website does not talk about this. It's only when you link Prednisone and AVN together when you do a search that you come up with this risk. I'd love to hear from others and if you have any information to pass on, I'd greatly appreciate it!
I'm new to this board, but am so glad I've found you! I've read through many of the other threads with the same condition and already feel like it's nice to be able to talk to those who've walked through this fire. A little background:
My daughter (21) was recently diagnosed with AVN/ON of both knees and her right elbow. I've contacted a doctor who specializes in protecting the joints before they collapse, contrary to what most docs do it seems. He wants to get additional xrays/MR's of both shoulders and hips just to be sure.
About a year an a half ago, she had a sudden, vicious onset of Ulcerative Colitis that eventually resulted in a total colectomy with continent reconstructive surgery. During that time, she was on steroids to try to bring it under control, which is where the AVN has come from. I'm so devastated by this and am so angry I just feel like I'm going to implode sometimes.
Has anyone here with AVN tried to bring legal action against the drug company for lack of disclosure? When she was put on Prednisone, I feel like I did my homework and consumed all the info in the product monograph that came from the pharmacist. I also read an entire book on it and nothing in there said she may get AVN/ON...it did say a risk of osteoporosis, but in my book, these are two different issues. Even the NIH webpage and the official Prednisone website does not talk about this. It's only when you link Prednisone and AVN together when you do a search that you come up with this risk. I'd love to hear from others and if you have any information to pass on, I'd greatly appreciate it!
Sponsor
cartner
03-31-2008, 12:19 PM
Hi,
I can't answer you question but I'm sure that it will be answered, the members of these boards are very active. All what I can say that it's great to see someone who really cares about her family. Jesus help you and I hope she will find a good doctor, good luck. I just wanted to welcome you to these great boards.
Michael
I can't answer you question but I'm sure that it will be answered, the members of these boards are very active. All what I can say that it's great to see someone who really cares about her family. Jesus help you and I hope she will find a good doctor, good luck. I just wanted to welcome you to these great boards.
Michael
AVNMom08
03-31-2008, 10:04 PM
Thank you Michael, I look forward to hearing from other members! I think I have found a good doctor, but he's very far away, and if surgery is involved, I'd like to find someone closer. I'm in the Panhandle of Florida, so if anyone has anyone here has had an experience with good docs in Florida, I'd appreciate the information! I'm going to check with the doc that I've found and he might have someone closer that he networks with. Thank you for welcoming me to the boards!
TaterbugTwins
04-04-2008, 10:14 PM
Hi, I have idiopathic osteonecrosis of my right ankle. We do not know the cause of mine, so no, I have not looked to the drug companies. I really need to do more research on that part of it. I have been on steroids on and off over the years, but not in any large amount.
AVNMom08
04-05-2008, 10:59 AM
Hi Taterbugs,
After doing alot of research, I've come across some studies that show a possible link between even short courses of steroids to cause AVN. If you don't mind me asking, what were the steroids prescribed for? Do you have it anywhere else?
After doing alot of research, I've come across some studies that show a possible link between even short courses of steroids to cause AVN. If you don't mind me asking, what were the steroids prescribed for? Do you have it anywhere else?
AVNMom08
04-07-2008, 09:59 PM
Hi everyone,
I'm relatively new and have been searching boards looking for others who've been diagnosed with this and what their treatments have been. She has it in both knees, right elbow, and possibly other places...she's having shoulders, hips and ankles MRI'd over the course of the next couple of weeks.
I've been researching like crazy and feel informed, but I'm so worried about what her quality of life will be. This was caused by steroids that were used to treat a vicious attack of ulcerative colitis that resulted in having her colon removed. I'm so angry about this and feel like I'm in a really bad dream as I don't want this to be real. She's been through so much already...it just breaks my heart that she's facing so much surgery..possibly 2 surgeries or more per joint that is affected.
Right now, she's doing ok, except for some very loud popping and creaking in her knees, and her elbow becomes extremely painful with overuse. She's not using stairs and walks only when necessary until she can be evaluated by what we believe to be a very good orthopedic doctor.
Would love to hear from anyone who's had steroid treatments and is now facing knee, hip or other joint replacements. I just wonder how many people don't know they have this until the bone collapses and are told they need replacements. Thanks for taking the time to read and support a very worried mom.
I'm relatively new and have been searching boards looking for others who've been diagnosed with this and what their treatments have been. She has it in both knees, right elbow, and possibly other places...she's having shoulders, hips and ankles MRI'd over the course of the next couple of weeks.
I've been researching like crazy and feel informed, but I'm so worried about what her quality of life will be. This was caused by steroids that were used to treat a vicious attack of ulcerative colitis that resulted in having her colon removed. I'm so angry about this and feel like I'm in a really bad dream as I don't want this to be real. She's been through so much already...it just breaks my heart that she's facing so much surgery..possibly 2 surgeries or more per joint that is affected.
Right now, she's doing ok, except for some very loud popping and creaking in her knees, and her elbow becomes extremely painful with overuse. She's not using stairs and walks only when necessary until she can be evaluated by what we believe to be a very good orthopedic doctor.
Would love to hear from anyone who's had steroid treatments and is now facing knee, hip or other joint replacements. I just wonder how many people don't know they have this until the bone collapses and are told they need replacements. Thanks for taking the time to read and support a very worried mom.
AVNMom08
04-10-2008, 11:31 PM
Hi everyone,
I've posted on a couple of the other boards, but wanted to ask you all about steroid use. Have you been on steroids, had painful joints and later been told it's Osteoarthritis when maybe the diagnosis of Avascular Necrosis or Osteonecrosis was missed?
A little background...my daughter was on steroids (Prednisone and Iv steroids) for 4 months while treating a vicious case of ulcerative colitis. Here we are a year and 1/2 later and now she has been told that she has severe AVN in both knees, right elbow, possibly left ankle and is being evaluted by MRI (because it's missed on a regular xray) in her shoulders, hips and ankles. I'm horrified that this is happening to her at 21 and am worried sick about what her quality of life will be. We've been to three doctors, all of whom say that all we can do is watch her deteriorate until the pain becomes unbearable and then do joint replacement...but those only last 15-20 years, and at her age, she's looking at 2 replacements per joint! I'm hoping those with any input or reassurance on these issues will respond. Thanks for listening!
I've posted on a couple of the other boards, but wanted to ask you all about steroid use. Have you been on steroids, had painful joints and later been told it's Osteoarthritis when maybe the diagnosis of Avascular Necrosis or Osteonecrosis was missed?
A little background...my daughter was on steroids (Prednisone and Iv steroids) for 4 months while treating a vicious case of ulcerative colitis. Here we are a year and 1/2 later and now she has been told that she has severe AVN in both knees, right elbow, possibly left ankle and is being evaluted by MRI (because it's missed on a regular xray) in her shoulders, hips and ankles. I'm horrified that this is happening to her at 21 and am worried sick about what her quality of life will be. We've been to three doctors, all of whom say that all we can do is watch her deteriorate until the pain becomes unbearable and then do joint replacement...but those only last 15-20 years, and at her age, she's looking at 2 replacements per joint! I'm hoping those with any input or reassurance on these issues will respond. Thanks for listening!
AVNMom08
04-14-2008, 10:04 AM
Just want you to know I'm thinking about you and hope all goes well with your appt today. Looking forward to hearing what the doc had to say.
aussie57
04-15-2008, 05:47 AM
Hi AVNmom8
Thankyou for thinking of me
but it seems that I dont have to much of a problem
The doc says that it is a small bone infarct and or bone island and that it is incidental one and nothing much to worry about, he says just a little bit of bone has died
he says I can resume all excercise and he wants to see me in 8 weeks
if I have pain in those 8 weeks he will then do an arthroscope to have a look at it (didnt mention MRI)
So my impression is that I dont have anything to worry about at this stage and he will keep an eye on me
So Im very happy about that because I was thinking bone grafts knee replacements all of that sort of stuff
So how are you going with your daughter are you getting closer to an appointment with the doc
please keep in touch and let me know what happens
Sorry I dont have anymore info
I am just so glad I dont have a serious problem
keep intouch
cheers aussie57
Thankyou for thinking of me
but it seems that I dont have to much of a problem
The doc says that it is a small bone infarct and or bone island and that it is incidental one and nothing much to worry about, he says just a little bit of bone has died
he says I can resume all excercise and he wants to see me in 8 weeks
if I have pain in those 8 weeks he will then do an arthroscope to have a look at it (didnt mention MRI)
So my impression is that I dont have anything to worry about at this stage and he will keep an eye on me
So Im very happy about that because I was thinking bone grafts knee replacements all of that sort of stuff
So how are you going with your daughter are you getting closer to an appointment with the doc
please keep in touch and let me know what happens
Sorry I dont have anymore info
I am just so glad I dont have a serious problem
keep intouch
cheers aussie57
AVNMom08
04-15-2008, 09:30 AM
Hi there! So glad to hear your good news, but am curious to know how he knew only a little bit of bone had died without an MRI?? I too have a bit of good news..the right shoulder MRI shows a small lesion of AVN, and the hip MRI's for her were "unremarkable." That was truly a relief! Still have the ankles, left knee, and left elbow to go... holding my breath. Once those are complete, we can then forward our package to the surgeon for review. But, her knees are pretty bad and I'm anticipating him wanting to do some type of preventive surgery this summer. I'll check in periodically with updates...glad yours was good news! Take care and best of health to you.
AVNMom08
04-18-2008, 10:37 AM
I'm reaching out again since I didn't get any replies to my last post. My daughter was treated for a severe bowel disease and the steroids that she took stated that she could develop osteoporosis; instead she developed osteonecrosis. Just reaching out to find anyone in a similar situation. Thanks!
DesertBloom
04-19-2008, 10:01 PM
Hi AVNMom: So sorry to hear about your daughter. I know from reading on this topic that steriods can cause this bone disorder. You said you have a Dr, but I wondered if you have checked with your nearest Univ Med Center? They usually have the top Drs in all areas of treatment. Also you mentioned research and thought I would mention that the NONF.org or NIAMS.NIH.gov are two excellent sources of info on AVN, and they also provide the new studies that are ongoing in this area. The NLM.NIH.gov is the primary research facility for this disorder. I don't know if you are close to the Univ of Florida, or the JFK Medical Center but those are two I'm familiar with.
I wish you and your daughter all the luck in the world and hope you can find a non operative way of treating this. At NIAMS.NIH.gov, they list many different types of treatments, but you would have to go there and see if any of the things they do for this would help your daughter in any way. I don't know if you are interested in this, but you can get a list of clinical trials on this through the NIAMS website.
One other thing...has your daughter been evaluated by a hematologist? You might want to check to see if her Factor 8/platelets and other clotting mechanism are in good shape since lack of blood flow to the bone contributes to this disorder. My husband has osteomylitis, which is *somewhat* similar to AVN, but also different. Osteomylitis as you probably know is a bone infection, and he was on cortisone for years prior to getting Osteomy... The general concensus was that the cortisone may have contributed to the bone infection, and he took it for quite some time. Many Drs wanted to amputate his calf/foot above the knee, but he refused and is now in remission on the Osteomy... but he also developed thrombocytophenia (low platelets) so he see's a hematologist regularly still. He's able to walk, still has his leg, but has great deformity of the ankle and foot. To complicate matters he also has Charcot Marie Tooth which is the source of the bone deformity. Charcot is a hereditary/dna malfunction condition with no treatment, other than custom made orthotics, which he has to have or he couldn't put any weight on his foot or walk. If you have any more questions just ask, although I'm not sure I can tell you much about AVN, other than the various things my husband had for treatment over the years, but again he is in remission-hooray-but this disease doesn't go away but can lay dormant, so there is hope. One of Robert Kennedy's children had AVN, and I believe he had it as a small child, you might want to check and see if he wrote a book on his experience and treatment, sorry I can't remember which child of RFK who had this. Osteomylitis and AVN have similar treatments so if you are interested in my husbands many different treatments I could fill you in on that, but I'm not sure if it will help you or your daughter specifically, but it might you never know.
Your a great MOM keep up the good work!!! Also keep us posted on her progress.:angel:
I wish you and your daughter all the luck in the world and hope you can find a non operative way of treating this. At NIAMS.NIH.gov, they list many different types of treatments, but you would have to go there and see if any of the things they do for this would help your daughter in any way. I don't know if you are interested in this, but you can get a list of clinical trials on this through the NIAMS website.
One other thing...has your daughter been evaluated by a hematologist? You might want to check to see if her Factor 8/platelets and other clotting mechanism are in good shape since lack of blood flow to the bone contributes to this disorder. My husband has osteomylitis, which is *somewhat* similar to AVN, but also different. Osteomylitis as you probably know is a bone infection, and he was on cortisone for years prior to getting Osteomy... The general concensus was that the cortisone may have contributed to the bone infection, and he took it for quite some time. Many Drs wanted to amputate his calf/foot above the knee, but he refused and is now in remission on the Osteomy... but he also developed thrombocytophenia (low platelets) so he see's a hematologist regularly still. He's able to walk, still has his leg, but has great deformity of the ankle and foot. To complicate matters he also has Charcot Marie Tooth which is the source of the bone deformity. Charcot is a hereditary/dna malfunction condition with no treatment, other than custom made orthotics, which he has to have or he couldn't put any weight on his foot or walk. If you have any more questions just ask, although I'm not sure I can tell you much about AVN, other than the various things my husband had for treatment over the years, but again he is in remission-hooray-but this disease doesn't go away but can lay dormant, so there is hope. One of Robert Kennedy's children had AVN, and I believe he had it as a small child, you might want to check and see if he wrote a book on his experience and treatment, sorry I can't remember which child of RFK who had this. Osteomylitis and AVN have similar treatments so if you are interested in my husbands many different treatments I could fill you in on that, but I'm not sure if it will help you or your daughter specifically, but it might you never know.
Your a great MOM keep up the good work!!! Also keep us posted on her progress.:angel: