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A MyLupusTeam Member asked a question 💭
Palm Coast, FL
October 31, 2018
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A MyLupusTeam Member

I have recently had stem cell treatment for my avascular necrosis due to prior steroid/chemo/history of Factor V due to lupus nephritis. You have to do your research. My treatment was not for my lupus but for a consequence of the lupus drugs over the years.

I am still in the early stages of treatment with my right hip. (core decompression with MSC's-mesencymal stem cells from my pelvis). I have significant damage and was not promised it would work but the doctor felt it was worth a try to delay hip replacement, decrease pain. I am hoping to avoid hip replacement --but I do feel I will likely need one on my right hip.

I also have this condition in my left hip and knee so what the Dr. will decide about those two joints I will find out at my next visit.

I was treated at NYU Langone by Dr. Einhorn. He is an orthopedic surgeon who has been doing this procedure for 10 years. He studied with the physician in France that has been using this treatment for 30 years. There is also a group called Regennex that treats only orthopedics. It does not work for everyone. The older you are the the less stem cells you have. Currently in the US you can not culture your own stem cells.

Most Rheumatologists are not up on current studies with stem cells, so you have to do your own research.

My treatment did not affect my lupus condition.

I do believe that there is a place for stem cells. If you have severe lupus and and looking into that I would direct you to Dr. Burt at Northwestern who has treated people with severe lupus with stem cells with positive results. I would also contact John Hopkins and see what their thoughts are.

November 3, 2018
A MyLupusTeam Member

Love Johns Hopkins!!
Sending you gentle, healing energies-

November 4, 2018
A MyLupusTeam Member

I would definitely look more into it. It is relatively new for autoimmune diseases, however has had fantastic success in other disease arenas. If you don't understand it, it may seem as if it is not a viable treatment plan, but it actually is. It is not for every patient and every disorder, however. New things can be frightening to people, especially if the science behind them is complex. I'd suggest that, as with anything you are thinking of trying, learn as much as you can about it, study it.
Research it, ask questions, talk to people who have tried it- both the successful and those for whom it did not work. Physicians who participate in studies often have participants who are willing to discuss their experiences.
Wishing you the very best-

October 31, 2018

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