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Topic: Vascular Necrosis (Read 815 times) |
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Kirk
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Vascular Necrosis
« on: Nov 8th, 2004, 7:03pm » |
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The VA has diagnosed me with Vascular Necrosis. One of the things that can cause it is Steroid use. Prednisone fer instance.
A search of the archives did'nt bring up anything usefull. Has anyone else had this problem?
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LeLimey
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Re: Vascular Necrosis
« Reply #1 on: Nov 8th, 2004, 7:07pm » |
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That sounds really scary, what have they said about it? Are they treating it? I hope it gets sorted for you soon
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dougW
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Re: Vascular Necrosis
« Reply #2 on: Nov 8th, 2004, 8:31pm » |
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kirk: Try the search for "avascular necrosis". The blood supply gets interupted in rare cases of chronic steroid use, usually to the femoral head (the hip).
try this link:
http://www.niams.nih.gov/hi/topics/avascular_necrosis/
Sorry to hear this.
Good luck.
Doug
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shinydellgirl
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Re: Vascular Necrosis
« Reply #3 on: Nov 8th, 2004, 9:38pm » |
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My husband had this about 7 years ago. He had total hip replacement. Before the hip replacemtn he had a laminectomy and steroids were used during his recovery. He was diagnosed a year ago with CH. He is 47.
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floridian
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I can think of two other people here with avascular necrosis from steroid use - probably more that are either unaware of it, or just haven't mentioned it.
http://www.emedicine.com/med/topic2924.htm
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vig
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Re: Vascular Necrosis
« Reply #5 on: Nov 9th, 2004, 9:28am » |
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Lizzie2?! YooHOO!?
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Lizzie2
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Re: Vascular Necrosis
« Reply #6 on: Nov 9th, 2004, 3:58pm » |
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I'm here...sorry...haven't been keeping up with the boards lately cuz not feelin so great!
Anyhow...yes I have been diagnosed with Avascular Necrosis of both knees (right knee is worse and also has a torn meniscus). My hip MRIs showed some abnormalities, but I have to get them rechecked in 3 months because they are not sure if it is transient osteoporosis or early stage AVN. If you google Avascular Necrosis (or Osteonecrosis) there is a great article on emedicine.com
I am told that mine is caused by steroids. Not everyone who uses steroids will get AVN, but it does predispose some people. It is another very very rare disease...lucky us!!!
One site to check out is www.nonf.org which is the National Osteonecrosis Foundation. They have some links there. Also, hit me up on MSN, and I can get you a lot more information. I'm just now learning a great deal about it myself here and there when I am able to.
Sorry to hear it got another person....this disease sucks big time. 
Hugz,
Lizzie
PS Floridian..who is the other person here that you know has it? Just curious.
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DerbyDemon
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Re: Vascular Necrosis
« Reply #7 on: Nov 10th, 2004, 9:05am » |
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Does this start with blood clots in the legs? I happen to have picked up to of those in the last five weeks.
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DerbyDemon
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Re: Vascular Necrosis
« Reply #8 on: Nov 10th, 2004, 9:05am » |
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Two even.
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Lizzie2
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Re: Vascular Necrosis
« Reply #9 on: Nov 10th, 2004, 10:00am » |
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Generally blood clots in the legs are not a signal of avascular necrosis, but it is definately something that needs to be checked out. Most people with DVTs (Deep Vein Thrombosis...or blood clots) require hospitalization so that the clots don't move to the heart or lungs. They can be extremely dangerous if not treated. Usually they won't bust the clots, but they will put you on heparin or lovenox for 3 days while it takes time for a loading dose of coumadin (warfarin) or maybe plavix if that is your doctor's preference.
I had 2 DVTs in my left arm due to a traumatic PICC line insertion in January and I had to stay on coumadin for about 4 months after that. My boyfriend had 4 Pulmonary Emboli, and he is now on coumadin for the rest of his life. They are both extremely frightening experiences!!!
DVTs when related to Avascular Necrosis can come as a result of the surgical interventions they would choose to do...least of which being perhaps a core decompression (drilling a hole through dead bone) or the most drastic being a total joint replacement depending on the joint affected. I will be looking at bilateral total knee replacements at some point, so I will definately be concerned about DVTs since I already had 2 before.
Get it checked out if you haven't already!!!
Lizzie
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DerbyDemon
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Re: Vascular Necrosis
« Reply #10 on: Nov 10th, 2004, 11:35am » |
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Thank you for the info and sorry you've had to endure. I'm lucky that neither clot is in the deep vein. Just have to put up with an ultrasound every 3 to 4 days and aspirin everyday on top of all the other meds down for CH. Relieved to know this isn't headed for AN.
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Pinkfloyd
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Re: Vascular Necrosis
« Reply #11 on: Nov 11th, 2004, 9:53am » |
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Sorry it took so long to respond...(I was with LizzieAlso...j/k)
Actually it took a while to limp over to the thread.
My left hip is getting pretty bad, due to AVN. It was caused by all the prednisone I used over the years.
I'm not ready for an operation, but it hurts and is slowly getting worse. It used to just bother me to stand or walk for long periods of time. Now it hurts just sitting here.
Don't know if any of you remember Bo Jackson, but his career was cut short (although he came back to play baseball after his hip replacement. His AVN was caused by a football injury, getting the joint dislocated in a tackle.
BobW
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manana
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Re: Vascular Necrosis
« Reply #12 on: Nov 11th, 2004, 4:19pm » |
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I too suffered "aseptic necrosis" (death without disease) or avascular necrosis to the femor head of one of my hips which I attribute to steroid use. I was being treated with prednisone tabs at the same time as being treated with corticosteriod injections into my spine for a ruptured disk. The doctors later said it "could" have been caused by steroid use. I believe they were affraid of a lawsuit & I believe I "took a hit" from the treatment without being informed of the possible consequences of steroid treatment. Anyway, the statute of limitations has long since passed on that case. Yes, Bo Jackson had the same problem & I believe you will find his problem can be traced to his elective use of corticosteriods. Do you think he was born with those massive muscles? I often read of so many people on this board using prednisone on a regular basis to treat CH it makes me shutter. Personally, I have listed myself with my pharmacies as "allergic to all steriods", period. I had my first replacement of the affected hip 13 years ago & had to have it done the second time 1 year ago. The average life expectancy for a normal titanium with plactic "cartiledge" replacement hip is 10 to 20 years however, there is a new one called "ceramic on ceramic" which "may" last up to 50 years. PM me if you want to know about my experiences. My hip & leg still hurts severely 24/7 but, the pain even immediately after surgery isn't nearly as bad as a CH KIP 9 or 10. I'm sorry to hear you had this reaction to steroid use. Avascular necrosis of the femur head is listed on the label as a rare side effect for some users but, I wonder how many people read the label or how many doctors inform their patients of the possible consequences of steroid use. I hope others will take note! Best to You, T
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Miklos
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Re: Vascular Necrosis
« Reply #13 on: Nov 12th, 2004, 4:59pm » |
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09-27-97. That's date of my hip replacement due to AVN. I am rarely have pain unless I do something stupid and forget that I have a prosthetic. Like, using a gas powered auger to dig post holes. That little episode "torqued" me off for three days of misery.
I refuse to use prednisone any more even if it might ameliorate some other problem.
P.S. I am paranoid about ladders now, too.
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Lizzie2
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Re: Vascular Necrosis
« Reply #14 on: Nov 12th, 2004, 5:54pm » |
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Damn there's lots more of us than I thought!!!
AVN sucks. Mine is just in the knees for now. I use lidoderm patches and Celebrex until I can have core decompression surgery in May.
Getting a repeat bilateral hip MRI in January to find the damage there.
No more pred for me...I don't care if it will save me from death. That stuff is truely poison!
L2
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LeLimey
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Re: Vascular Necrosis
« Reply #15 on: Nov 12th, 2004, 6:02pm » |
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So how long were those of you that took pred on it for? I've just had 8 months solid on it and I've been on budesonide (another steroid) for the past two months.
I had horrible side effects from it at the time and now I'm concerned in case I'll discover any long term ones in a few years time!
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