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jnnydss
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/1/2008 5:11 PM (GMT -7)   
Hello all,
I don't know where to post this so I picked good ole Lupus because I know osteonecrosis can be a complication of our friend Lupus.  I have systemic sclerosis (sclerderma) and was diagnosed with osteonecrosis (ON or AVN) yesterday.  I think my Dr. sucks (for lack of better words) and I am left in the dark.  Any one else out there that can tell me their story?  I have it in my knee so far. 
Thanks,
Jennifer

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 5:27 PM (GMT -7)   
Hi Jennifer,

Welcome to the forum! I don't know a thing about osteonecrosis . . . but, if I remember right, it can be caused by some meds. Was yours drug induced?

Maybe you could tell us what the osteonecrosis does to the bone/joint.

There are a few here with scleroderma And Lupus . . . so you might find some good company. Glad you found us!!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jnnydss
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/1/2008 5:36 PM (GMT -7)   
Hello! Well, I am only learning myself, but it is loss of blood to the bone, and the bone cannot repair, therefore it eventually dies. I have been on Prednisone for about four months at 80mgs, which can induce it, but I also have Raynaud's so my Dr. thinks that is why I am not getting blood supply there. Anyway, it begins as severe pain and from what I hear, it usually just gets worse requiring joint replacement. Well, fine and dandy for the average person with osteonecrosis, but you get someone like me that has scleroderma and it's not so simple. I am so bummed. I think osteonecrosis (aka ON and AVN) are pretty rare so figures, I'd get it! I have it in my knee but most common is in the hip.

Thanks for posting! I hope I can meet some people for advice and information.

Thanks!

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 5:42 PM (GMT -7)   
(((((((( Jennifer ))))))))

That sounds brutal. I do have an x-sil who had to have both hips replaced after treatment for breast cancer. My brother did say that she was taking prednisone . . . but his info was so sketchy that I never could piece it all together. But this sounds like the very beast!

I'm sorry you are dealing with this. It just seems like a real domino affect. We get an AI disease and then the secondary conditions and then the side affects from our meds. *sigh* You just can't win sometimes.

Still hoping you'll find others with more info on this topic. Thanks for sharing.

Ummm . . . does your pain hang around all the time . . . or is it short and sudden, then gone?

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


jnnydss
New Member


Date Joined Oct 2008
Total Posts : 3
   Posted 10/1/2008 5:56 PM (GMT -7)   
I know, it doesn't sound fun...Oh, and the Dr. told me I would have to alter my lifestyle. Um hello, tell me something I don't already know. I did that 3 years ago when I went on disability. Well, the pain came a few months ago and yes, it has been constant. I can't bend it back or kneel down without pain, and stairs are terrible. I am just sad because I finally found a passion, and that is, as boring as this may sound, walking my dogs in the park that is just outside my front door. We would walk twice a day and that was the best part of my day and now I can't. UGH. Yes, everyone said Prednisone was bad for me but I just took drs orders. I took it for lung fibrosis. Now I am on Cellcept and oh dear, I can't wait to hear what that will do to me.

Looks like you have mixed connective tissue disease, so I am in good company. I am sorry! I know a LOT of people with this type of stuff, thanks to the Internet, and it is a constant battle. I always took my health for granted and the last three years it's been downhill. Hard to tell if it's getting older or the disease progressing. Do the Drs have any idea what overlapping AIs you have? I have a deep down fear that I could have Lupus on top of Scleroderma. I certainly have some of the signs.

This whole joint thing is scary though because it's very risky for me to have surgery. I may be hypersensitive to this ON stuff, maybe it's not such a big deal after all...but it sounds bad.

Thanks for listening...!!!

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 10/1/2008 7:21 PM (GMT -7)   
I don't think you're being hypersensitive. AVN or ON is a very serious problem. I had a cousin who had his hips replaced due to AVN secondary to chronic steroid use. I certainly hope everything works out for you. Judy

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 7:28 PM (GMT -7)   
(((((((((( Jennifer )))))))

*sigh* I'm SO sorry you've lost your new passion. I feel deep down for you. I was participating in backpacking weekends when my first big flare hit. I had been walking 11 miles at a time with a 35 lb pack. I was SO enjoying my walking and experiencing the different wildlife etc. I have very gradually been able (over some years) to build my walking program to a slow paced 2 miles. I did a 4 mile hike a couple weeks ago. I'm really encouraged recently as I've found a way to get more distance in. If I walk two or three very short walks most days, I can fit in a nice two miles on occasion. So I've been walking my dogs.

Your situation is SO different as your issues sound really degenerative. I actually feel very fortunate. I am one of the least affected at this forum.

I do seem to have Undifferentiated Connective Tissue Disease (but not Mixed Connective Tissue Disease - which is a horrible overlap of Lupus, Scleroderma and Polymyositis). Undifferentiated is when there isn't enough criteria for firm diagnosis. I also have some issues with my large intestines that the Cleveland Clinic GI doc says is most likely Crhon's. Right now that issue is quiet, and I've been very gradually rebuilding strength, energy and endurance. I'm cleaning my house again and am very happy to be able to function again.

I hope your issue will be minimized or disappear now that you are off of pred . . . but it doesn't sound like it works that way. What is your prognosis? Expectations for disease advancement or healing?

Most folks at this forum have a great attitude and I am blessed to know such courageous people. It is really helpful to be able to gather courage and hope that comes from knowing them.

Thank you for sharing.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/1/2008 8:43 PM (GMT -7)   
I have AVN of both femoral heads. It was discovered via MRI 4 years ago when I complained of debilitating hip pain. Interestingly it was no longer "active" AVN. Doctors cannot agree when the bone death occurred or what happens next. Ortho surgeon wanted to immediately replace both hips. My GI was unsure that the hip pain was related to the AVN. Sure enough! He was right and treating my Crohn's resolved the hip pain.

So here I am now, still with dead areas in both femurs and no hip pain. Doctors are baffled. They tell me that normally the bone collapses within 2 years of this happening. Obviously this is not true in my case. Latest decision is to wait until collapse becomes apparnet and get the joint replacement. Oh joy...

Jennifer, so are they offering knee replacement or are your other health issues complicating that? In my case they really want me to hang on as long as possible so that a replacement joint will outlive me rather than me outliving the joint. The one thing I have discovered is that treatment for AVN is all-over-the-map so to speak... recommendations vary wildly. Since mine is relatively stable for now I have not gone headlong in determining the best course of action.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


mygrljes
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 10/2/2008 4:45 AM (GMT -7)   
Hi Jennifer,

I had AVN of both of my hips caused by the prednisone. When the AVN first started I had debilitating hip pain, first in just my left and a few months my right startd in. I had x-rays and MRI's done to diagnose this. When my left one got to the point when I finally needed surgery, which was about a year after it started, I didn't have anymore pain. My orthopedic surgeon said that was normal for amount of dead bone, but if I didn't have surgery to replace it I risked it breaking completely and would be in more pain than I had before. So, I had my left hip replaced in 2000 but we left the right one alone to see how it progressed. I ended up having the right one replaced in 2002. I was told my replacements would last 20-30 years, depending on my weight on how well I take care of them. Since I was still in my 20's I get to look forward to another surgery, but not for a very long time yet. I won't lie, and certainly don't mean to scare anyone, but the recovery from the surgery was hard; 6 weeks of physical therapy and basically learning how to walk again. I can say, though, that it was definately worth it.

I hope this helps in your decision making. Take tare.
Robin
 
dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
 
 
Also a wife and mother of three.


Tá mé breá
Regular Member


Date Joined Aug 2008
Total Posts : 140
   Posted 10/2/2008 7:45 AM (GMT -7)   
hi Jennifer, are you seeing a hematologist? I have Myelofibrosis and I am being referred to a hemo. they believe my disease is secondary to an autoimmune disease (which is better) but you need to see a specialist. if your dr sucks get a new one. what you are describing could get worse if not treated appropriately. you are worth better treatment. we've most all had to deal with more than a few sucky drs. no one deserves that!

best thoughts and wishes for you

Marie
Marie-43 yr old mother of 6 grandmother of 1 going on 2!
dx 2008 - myelofibrosis - possibly autoimmune, osteoarthritis in spine, testing for possible MS or CNS lupus / vasculitis. family history - mother RA/Lupus maternal gma - lupus.
rx-cymbalta, propranolol, clonazapam, prednisone, progesterone cream, b6, b12, flaxseed oil, C.

"All we have to decide, is what to do with the time we are given" ~ Gandalf

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