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Possible autoimmune disease, need advice

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Old 02-08-2013, 10:47 AM   #1
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Possible autoimmune disease, need advice

Im 29 years old. At 18 I began having hip pain(right) that got really bad. I was diagnosed with avascular necrosis at 19. At 21 I had a full hip replacement due to the AVN. A few days ago my doctor said I have Reynauds Phenomenon in my hands. I told him about the AVN (nobody could ever give me a reason for why I got AVN so young) and he ordered bloodwork for rhuemetoid arthritis and lupus. I need some advice. I just wanted to see if anyone has been through something similar and/or can tell me a little about autoimmune diseases. Any advice or shared experiences would really help me right now

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Old 02-13-2013, 03:37 AM   #2
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Re: Possible autoimmune disease, need advice

Hi & welcome. I'm sorry to read about your previous hip replacement & now the concerns about lupus and RA. Not easy...

In both lupus & RA, your immune system is aberrant: it produces unwanted "auto-antibodies" that can attack your cells... e.g., skin, major organs, connective tissue, bones, etc. Treatment involves suppressing the immune system to forestall that auto-antibody production. The specialists best versed in these two conditions are rheumatologists. (QUESTION: is your dr. a rheumatologist? I'd definitely want to see one, if I were you.)

I have lupus, but no AVN. To read more about lupus---how it's diagnosed, common symptoms & labs, etc.---you could check out the Lupus board. (To get there, select the "Find a Board" link above.) There you'll find "sticky posts" (permanent info posts) located right above the user threads. Perhaps the first concept to grasp is how the 11 ACR (Am. College of Rheumatology) criteria operate. Once you've browsed those stickies to get your feet wet, you could post questions there, too, if you like.

As for RA, I think the closet boards are Arthritis and this one (Autoimmune Disorders). Similar to lupus, RA has a set of ACR criteria.

I hope this gives you a head start & that you'll post again soon, here or on any of the boards. It's so difficult being tested for conditions that are new to you, and so complex, to boot, so I'm glad you found us here. Sending my best wishes, sincerely, Vee

Old 02-20-2013, 12:25 AM   #3
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Re: Possible autoimmune disease, need advice

After hip replacement patients do suffer from chronic pain but they do improve the mobility and function of the hip joint. Physical therapies can help you in managing with this. Consult your physician for the therapies that you need to follow.

Old 02-20-2013, 03:31 AM   #4
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Re: Possible autoimmune disease, need advice

Hi again. My (extremely limited) understanding of avascular necrosis is that it has multiple causes, only some of which are autoimmune related. e.g.

Autoimmune causes seem to include clots in blood supply that have been caused by vasculitis or by circulating "lupus anticoagulant". (For the second one, you could read the "sticky post" about antiphospholipid syndrome, a blood clotting disorder seen in some people with lupus but occasionally seen standalone.)

Other causes seem to include trauma, increased pressure within the bone (not sure what could do that), alcohol use, Gaucher's disease or decompression disease (no idea what those are, sorry), radiation, chemotherapy, and long-term steroid use.

And I imagine there are more causes possible!

Several of the above should be included in your outstanding tests: antiphospholipid and vasculitis, minimally. Hope this helps some, best wishes, Vee

Old 08-26-2013, 06:31 AM   #5
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Re: Possible autoimmune disease, need advice

My husband was diagnosed with AVN in December. Two weeks after the diagnosis he has his hip replaced. At that point the head of the femur had collapsed. In June he had his other hip replaced. Throughout this time he has had constant groin pain, before and after the surgeries. We have been to several doctors including a neurologist to rule out nerve damage, a general surgeon to rule out hernia, his original orthopedic surgeon plus a second one. and even a pain management doctor. The last thing he had done was called a Maverick MRI which could only be done at the Hospital for Special Surgeries in Manhattan. This test showed inflammation on both sides of the hips but the doctors don't know what is causing it. He has been out of work for months, can't sit for too long or stand for too long, he is just in constant pain. Someone mentioned to us yesterday that maybe we should look into autoimmune disease. I know this post may not help you but know that you are not the only one out there that is dealing with this. We have found so much information about the causes of AVN and the treatments but not much about post op problems or complications or at least none that apply to us. Hang in there. I have been trying to stay positive and am praying that there is someone out there that will have the answer to this problem.

Old 08-26-2013, 09:31 AM   #6
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Re: Possible autoimmune disease, need advice

I would definitely look into autoimmune disease as a cause for the AVN. If diagnosed with lupus or RA or something similar, and treated for that, the chance of getting AVN in the other hip, plus arthritis elsewhere, will be substantially reduced. That would be my first priority! See a rheumatologist for thorough testing.

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