Saturday, July 10, 2010 Tami asks

Q: Avascular Necrosis

I have been diagnosed with avascular necrosis, and have had both hips, and 1 knee replaced and told my shoulder needs done also.

I have had positive RA test, but also have lupus, sjogrens, relapsing polychondritis, vasculitis. and more...

I am and have been since 2007, following both hips surgeries been on coumadin.

Is there anything that can be done to slow the avascular necrosis down? I no longer take prednison on a daily basis. I am worried there will not be any healthly bones left in me.

Any help would be wonderful.

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Answers (2)

ronie

7/11/10 2:17pm

Wow!! you sure have your hands full!! My heart goes out to you.

As far as treating AVN, aside from the many replacement surgeries you have already had and staying away from prednisone and such, I don't know of too much else to treat it. I have heard that some AVN patients are given med for Osteoporosis like like Fosamax or other bisphosphonates to slow the progression. Some are even given blood thinners to increase blood flow to the affected areas.

I do not know to what end that these meds help people. For the most part, the concentration is geared toward controlling the other health issues that lead to AVN in the first place. I have one close friend who has had RA for 33 years and was dx with AVN a few years back. She is on Remicade and blood thinners for the time being. They took away her prednisone as you can imagine. Other than that, is awaiting bone grafts to replace the bone they took from her knee (don't ask me why they did it in 2 separate steps). She too has had both hips replaced already. She also uses electrical stimulation in her physical therapy to promote bone regrowth and blood flow.

Hope some of this helps you at all.

Ronie

Tami

7/13/10 1:37pm

Thanks for replying. I am already taking coumadin, since 2007, for 2 episodes of blood clots, in leg and in lungs.

Then they decided I needed to have thinner blood, so I was told to give lovenox injections 2 per day, did that for a yr.. Still had to have knee replaced in Nov.And now the other knee is so stiff,I know it has it also, and the one shoulder has it. So I just need to decided which one is first..lol..

I was unable to get my comadin level regular this time, I have been back on that for a yr.. Just the other day, the oncologist switched me to Fragmin, injections 1 per day. My blood was alway getting to thin, with no reason's..

This disease really stinks..LOL

Thank you.

Tami

RA>>AS>>CROHNS

7/13/10 6:39am

Well this is my first post to this site and i figure i should start off by saying i am a 29 yr old male and have had JRA since birth and it went untreated for many many years and came to a breaking point when i turned 27 when it finally came up as RA and had to have my spine fused because i had three crushed disc in my back lower lumbar area followed by AVN to my right hip and before that hip displacia since birth and my first operation at 12 and since then nothing but pain i lived a hard life and lied to myself for years and worked as a cook and stood for hours and lifted weights that probably led to my back going ... all i know is that remicaide is a joke it hurts more than it helps no pain killers help cause i cant get anyone to give me the doses i need .. i feel like its a battle between the doctors and the disease... im 29 now and i eat more pills than id like to admit none of them pain meds... my spine is an upside down question mark my hips are fake my knees need replacing but they wont cause they say im too young and i cant feel my left side from my breast on my left side to the top of my left knee from my spine surgery... I cant keep an erection for the life of me ... Im laying it all out there .. im tired but cant sleep im sick but there's no help... if we are to find a better way we need to unify with one another i believe that there is a way to stop this hell we live with... AVN can drive u insane alone throw in some RA or AS and for you who don't know that one its Ankolosying Spondilitis i probably spelt that wrong but my hands are hurting from typing ... Im willing to be anyone's guinea pig and test anything one me to end this curse.... What i found that helps is better health threw positive thinking if you feed the depression it makes RA stronger.... but who do we talk to ... a shrink that knows nothing of pain real pain... cry out in ur sleep unable to move cant even feed yourself pain ...this is my dilemma ... Im not saying im gonna quit ... thats not in me ... we have iron will all of us who suffer from a debilitating disease and shouldnt have to jump thru hoops to prove it ... what happened to human compassion ... where did it all go wrong ... And you can say im angry sure u would be too to be cut down and my mind works but thats when i can think past the pain... sorry to make such a long testimony but i needed to clear my mind ......

ronie

7/13/10 2:41pm

Good Morning VIETNAM!!!!

Lord have mercy child, you really did lay it all out there. But for some reason your post is attached to another person's question. By pure luck I found it. I fell over it to be exactly.

I know you will get lots of responses from your honestly!! Could you please copy and paste your post to the SharePost Community for all to see?!!?

I do have a few quips to add to your post and would love to talk to you more. Lene Anderson and DebbieM1234 would probably love to read your post too. We are always looking for advocates and vocal personalities like ourselves.

We are veterans and also believe in ganging up on our disease!! I love to joke and am currently laughing hip replacement in the face.

Come join us in SharePost or even in the Ask a Question section.

See ya, I am on my way for yet another EKG!!

Ronie

Q: Avascular Necrosis

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