I was originally told that my Osteonecrosis/Avascular Necrosis (ON/AVN) was idiopathic, meaning my doctors could find no evidence as to why I developed ON/AVN. Through my own research and after talking to many doctors including an orthopedic specialist in The Netherlands I came upon the research of a doctor by the name of Dr. Charles Glueck, Medical Director of the Cholesterol and Metabolism Center at the Jewish Hospital in Cincinnati, Ohio. Dr. Glueck has worked with ON/AVN patients all over the world and has extensively studied the relationship between clotting disorders and Osteonecrosis/Avascular Necrosis.
Dr. Glueck sent me several of his clinical papers and told me that it was highly likely that I had developed Osteonecrosis/Avascular Necrosis due to a clotting disorder I did not know about. He sent me the following coagulation work up to be performed:
The above tests have LabCorp codes. If you don’t have a LabCorp near you here are Quest Diagnostics Codes for the same coagulation work up:
Quest Diagnostics Laboratory Codes
After having my blood tested for his recommended disorders I discovered that I had three gene mutations: Factor V Leiden, High Homocysteine levels and eNOS T786C.
Osteonecrosis (Avascular Necrosis) 
A lot of people, well several anyway!!) have worked w/ Dr. GLuek and I thought of it. But, then it was thought that the cause was multifactorial and strongly SLE. If that was the case, the lupus and clotting disorder are here to stay, so I didn’t want to pursue what I thought might be a limited outcome. Others have had GREAT success
Maybe you should get checked out for coagulation disorders anyway. Everything seems to be related. I’m on high doses of low molecular heparin now and it seems to be working. Based on new MRIs my bone is starting to heal. It’s taking a LONG time, but there has been improvement. Did you get a chance to read Dr. Glueck’s papers?
Often, Dr. Gluek dow low molecular weight heparin or he does lovenox. Bottom line, my husband just came off of 18 mos unemployment and we’ve reached the bottom of the barrel. I’m on SSD and in the ‘donut hole’ Lovenox (even the generic) would break us. I know of APS and the factor V; I wouldn’t be surprised if there are more.
I have the bloodwork orders that Dr. Glueck sent me but I don’t think I’ll proceed.. Then again I ought to at least run it by my heme, my PCP and my orthos
I ought to read his papers; they’re in the ON group’s archives. BTW, I left you an e-mail about the Yahoo ON group and sent it from an account that I RARELY ever check. The mail I check all the time is anowlin@mac.com Later!
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I just got back my results (all but the ENOS) and the only thing abnormal is the PAI-FX which is heterozygous. That, I guess, means I don’t break down clots when they form. So I’m forming them, and one of them is in the vein going to the hip? (just me thinking out loud)
Everything else is normal. One of his colleagues actually emailed me the results and there are more tests to take (yay more $). I guess because so many of mine on the “basic” test are normal, they need to take more blood. Will have to see what the ENOS test shows once I pay the bill on Monday.
Patty, Dr. Glueck’s work make so much sense in that it gets to the CAUSE of the clots; not just the clots themselves. Causes of blood clots are sooooo many that genetic and blood clotting disorders are only a few.
Do your suffer from anything remotely autoimmune? Often in autoimmunity the clotting cascade is affected, or fat metabolism is affected-forming clots, antiphosolipid syndrome can cause clots and can be lethal. There are numerous things that can cause a clot to form. That’s why I didn”t pursue Dr. Glueick’s testing, because I know I have a clotting disorder which Dr. Glueck would certainly note and likely treat.
In the meantime, I’d continue to make autoantibodies because of the autoimmunity that is the cause of lupus and Sjogren’s and any of his work would be sabotaged by my own immune system.
Patty,
Glad you got your results back. I am heterozygous for PAI-1 as well. It’s a complicated mutation. I keep meaning to post about it on here, but haven’t had time to extensively research it yet. I’m definitley going to though. One of Dr. Glueck’s papers on here addresses that mutation. I wonder what your eNOS results will show. At least you know somewhat what may have contributed to your AVN and you’ve learned more about your body.
I thought that once the AVN is arrested or reversed, the bones heal to a significant degree, to be more asymptomatic. If Glueck’s treatment is effective, then it means that it helped the body resist the destructive action of the mutation. Once you stop, the mutation/autoimmunity theoretically starts going to work again. But remember, AVN doesn’t necessarily come back, nor does it become destructive overnight. IS it possible that one could heal from AVN, and then have to go back on the treatment to keep it in check if you start having symptoms again?
Autoimmunity is very common; I will bet that at least some of the success stories of Glueck’s had autoimmunity as well. I don’t think we know the whole mechanism by which Lovenox,etc. works, so it isn’t necessarily true that it wouldn’t work in the presence of certain antibodies.
Just a thought!
Thanks for al the info–this blog got me started with Glueck. I am praying that his treatment arrests the AVN. Surgeons are telling me that they think arthritis is more my problem than ON, (although I was Dx’d by MRI as AVN). Hence, I am wondering if I should just keep my appointment for hip resurfacing instead of waiting to see if Lovenox and arginine help–they won’t help arthritis pain, if that’s what this awful pain is!
Any thoughts on the pain of arthritis vs. AVN, and has anyone had bad arthritis but only early stage(II) AVN?
Marcy
I got my blood results back today and just faxed them to Dr. Glueck. I have high homocysteine levels. I am still waiting for the results for my eNOS test that was sent off. Which blood disorder that you take supplements for do you believe has had an impact on the regression of your AVN?
I have high homocysteine levels also and they contribute to clotting issues. I take Folic acid, B6 and B12 for it. You can read about them on my blog: https://osteonecrosis.me/clotting-disorders/homocysteine-levels/
This will give you a better idea of what homocysteine means in your body. Hope you are doing okay.
I have high homocysteine levels also and I carry one copy of the eNOS gene. I take Arginaid for the eNOS mutation and folate and B6 and B12 to help lower my homocysteine levels. I’m confident that a combination of all these supplements and the 3 month course of heparin have helped my disease regress. I intend to continue taking these supplements for the rest of my life.
I basically look at it as if I’m treating each of the factors individually that caused me to develop AVN. How are you feeling?
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Are the recommended coagulation tests just supposed to be the circled ones on the lists? Thank you thank you for posting these!
I recently learned that I have ON/AVN in the knee and adjacent to a dental implant. As a child I had Legg-calve-perthese. I live in Seattle and am wondering what medical work up I need.
Avn jaw, dental implant rrmoved as it did not heal. Coumadin for 20 years and lovenox as needed. Rrcently also dx with cvid-probably root of it all. My guess is legge-perthes certainly related to clotting disorder. Nancy stephens. Good luck
I saw dr. Glueck from approx 1994 to 2006. I have multiple clotting disorders and avn of jaw bone. Require coumadin since 96 which helped jaw pain. Did not help how bad i felt overall. In march of 15 was disgnosed with CVID-immune deficiency i was born with and unaware of till i was 65. Apparently, my clotting disorders , vasculitis, and lymphoma are rather common with cvid. I see a pediatric immunologist who put it all together. I have just found i am in heart failure and this is rather unusual in my case. Its takrn me since 1988 to get diagnosed this far. Dont give up. Nancy stephens
Hello,
I am just wondering if anyone has any updates on their experiences with Dr. Gleuck’s treatments for Osteonecrosis as it relates to clotting disorders?
I haven’t updated my personal story on here in a long time, but after being treated with blood thinners for two years my osteonecrosis healed.
That is awesome to hear! Were you able to stop taking the blood thinners after the 2 year period or do you have to keep taking them to maintain?
I’m recently diagnosed and learning about the disease as well as exploring my options. I got most of my blood work ordered and drawn yesterday, so I’m hoping to get results to Dr. Glueck soon to see if I have any disorders or factors that may have underlying contributions to my AVN.
Have seen dr glueck many times. He found many clotting problems. Had trigminal neuralgia, then vasculitis, then stage 4 nonhodgkins lymphoma. These followed by APS diagnosis, CVID diagnosis requiring IVIG infusions, and finally severe microvascular ischemic heart failure. Ejection fraction in 20’s. Bottom line diagnosis is CVID-congenital defect in B lymphocytes rendering them incapable of manufacturing antibodies. Took 27 years to be diagnosed. Dont give up.
21 yrs ago diagnosed by dr chas glueck with 3 or 4 clotting problems, put on coumadin jan of 1996. Coumadin eliminated 95% jaw pain. Do u know of any osteonecrosis patients who have used xarelto successfully? Also, found in sept 2016 dr glueck retired. Do you know of him seeing any of his old patients?
I too would like to see dr glueck. Many say he is the only one in the Cincinnati area to help me with thyroid, mthfr, clotting disorders, etc. I am sad that once I was referred to him I found out he retired. Is he doing any consulting or work on the side? Please let me know if you find out.
Brandi. I am a facilitator of an ON group and he has asked me in the past to send him referrals. I’ll see if I can get in touch with him and ask him your question. What i your e-mail and I’ll give it to him if I can.
My email is brandistein@hotmail.com
That would be great if you can ask him. If he can’t help and is completely retired, maybe he can recommend a doctor who can?
Thanks
Brandi Player
Dr Glueck was unbelievably nice enough to help. I needed to find out something but it seems he has retired! Hard enough trying to figure out who has copies of my test results. Do you know if anyone has taken over his work or who the people were working with him??
I do not use Twitter so would be grateful Lupusgirl, person with ON Twitter group would please post here and send to maxwellsmart20002000@gmail.com any info regarding anyone who has taken over Dr. Glueck’s role. Anyone know expert anywhere? You said you might be able to ask Dr. Glueck question and I was his patient
So here it is:
Like many people I have multiple illnesses. I have another horrible illness called interstitial cystitis/pelvic floor muscle disorder/and related disorder of sring that is priblem fir many post menopause women.. Interstitial “expert” prescribed Estrace, claiming not enough estrogen in it will absorbed to cause risk to me. Wish could ask someone like Dr. Glueck since believe I read not supposed to take estrogen or tamoxifen or Evista. Based on the results I note below, I have some predisposition to blood clotting based on genes (heterozygous for 677T MTHFR, carrier of Gaucher’s but as of now experts do not think just being carrier increases clot risk, and had PAI but Dr. Gluck said either one I had or only one side so it did not increase blood clot risk) – so Dr. Glueck said to take merhylfate, B6, and B12 BUT not to take blood thinner (I wish he had – then would feel something fighting AV).He did however say my having taken Evista to prevent breast cancer and help my bones may have pushed me over edge and led to the AV.
So dilemma. Use Estrace which is estrogen that is somewhat absorbed and risk AV worsening or blood clot creating AV in another joint. Or live with horrible IC pain. Cannot take painkillers or cannot work or drive – and looking for work – gone through savings and unlike those fortunate to have spouse I am single.
Another area that would be of interest to many people with ON/AVN- are biologics any specisl risk for AVN patients? In addition to AVN, I have osteoporosis – not sure if any link to AVN. Certainly creates issues if get THR that AVN patients should be aware of. Know bisphosphonstes can cause ON jaw but rare and nothing found said if have AVN hip any greater risk than anyone normal in getting ON jaw. So here is issue. My use of bisphosphonates was working but stopped. So Dr. wants to give me Prolia. I have issues already since autoimmune illnesses run in family, I have mild form of psoriasis (sister has horrible autoimmune disease) and biologics dampen it and with IC cannot afford to get ITIs which are side effect biologics for women BUT no info found if people with ON have any special risks if take biologics. Any one seen any med info on it? Since you have lupus maybe you are given a biologic so might know.
I suggest that you NOT take Prolia. I took Xgeva which is 6 times stronger than Prolia and it gave me osteonecrosis of the jaw.