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Thread: Today’s Rheumy appointment

  1. #1
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    Smile Today’s Rheumy appointment

    Hi to all,

    I’m going to cross- post this to both the WeHaveLupus site and the AVN site, so please excuse me if you see some names that you don’t recognize:
    I visited my rheumy today, and she had some very interesting information for me.
    She did an ultra sound of my painful right knee, and found a fluid build-up, which she aspirated. She noted that it was bone-on-bone (not news to me – I can feel the grinding) and asked whether the OS had given me the option of replacing the synovial fluid (He had not). She gave me some info on SUPARTZ injections, which will replace the lost synovial fluid with an artificial joint fluid which is synthesized from cock’s combs. She thinks that this might help to cushion my knee and put off more surgery for a longer time, so I think that I’ll give it a go – it’s just five weekly injections.

    The other thing that she gave me info on was called Platelet Rich Plasma – a regenerative injection therapy.
    Marie, this looks a lot like the stem cell “filler” for AVN that has been discussed on the AVN site. She told me that it had been presented at a conference by an OS named Simpson in California, which excited me. She’s the first Rheumy in South Texas to try it. Instead of surgery, this therapy uses blood from the patient which has had the platelets and growth factors concentrated by 400%. The doc thinks that I might be a candidate for this – once again, to hold off the need for a TKR.

    I looked up Dr. Simpson in CA, and this is the site that I found:
    http://repairstemcell.wordpress.com/...ccess-stories/

    If you scroll down through the articles, you can find some on adult stem cell use in osteoarthritis and even some mentioning use in ankles (for those with AVN in the ankles).

    This all looks like it may be very useful research for both the folks with joint pain due to Lupus and other autoimmune issues and those with AVN. (Of course, there are those with both – like me!). Saysusie, have you seen any of this research?

    I’m sorry that I finally found Dr. Pineda just before I move! I’m planning to show all of this info to my new rheumy in CA. I’m not sure where Costa Mesa is (for Dr. Simpson and his research team), but I’m wondering if my insurance will go for it? We sure won’t mind traveling around CA a bit for it.

    I hope that this info proves useful to folks on both sites!
    Love you all,
    Hugs,
    Marla

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    I don't have a answer about all the stuff you found out today at your appointment, I just wanted to give a clue about where Costa Mesa is. It's where I am right now, lol. I work in Costa Mesa, not sure how well you know Southern California, but it is about 20 minutes from Disneyland. Everyone usually knows where that is. Good luck, I hope your insurance will allow you to do the research.

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    Red face

    OK all,
    A quick correction. The Doc. that my Rheumy was talking about was Dr. Steven Sampson, who practices in L.A. The place in Costa Mesa seems to be the research lab that is associated with the procedure. (See? I'm still at the research!)
    I do hope that my insurance will allow a jaunt to L.A. after we get moved out to Monterey. We have friends in Pasadena, so we won't mind a trip there at all. Perhaps I'll get a chance to check this doc out and report back.
    Stay tuned,
    Marla

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    Marla,
    Congrats on the good news appointment! Such a treat to get good news at the doctors! Also, what is AVN?
    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Quote Originally Posted by SandyR View Post
    Marla,
    Congrats on the good news appointment! Such a treat to get good news at the doctors! Also, what is AVN?
    Sandy
    Thanks, Sandy
    AVN stands for Avascular Necrosis, also known as osteonecrosis. It just means that blood circulation has been cut off to the bone, and the bone is dying and flaking away.
    I've met several people who also have autoimmune issues, so I think that they may be related in some cases.
    The scary thing is the fact that many people develop AVN after fairly large doses of steroids. This really worries me when I read how many of our own members depend on steroids for treatment.
    Marla

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    Marla,
    That sounds incredible painful. I really hope this new therapy will help you out.

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hi Sandy,
    I had the artificial sinovial fluid injected yesterday, and it's really helping! I actually felt like going shopping afterward. Today, I drove to a meeting on the base, and then shopped at the commissary (military grocery store) all by myself, and I didn't have to use the electric cart!
    This, combined with the Planqenil and MTX, is making me feel almost like a normal person again - WHOO HOO!!
    Marla

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    Oh Marla,

    I am happy for you. It must be so nice to feel almost like a normal person again. That is so great

    Debbie

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    Quote Originally Posted by magistramarla View Post
    Hi Sandy,
    I had the artificial sinovial fluid injected yesterday, and it's really helping! I actually felt like going shopping afterward. Today, I drove to a meeting on the base, and then shopped at the commissary (military grocery store) all by myself, and I didn't have to use the electric cart!
    This, combined with the Planqenil and MTX, is making me feel almost like a normal person again - WHOO HOO!!
    Marla
    Marla,
    That is awesome! If your commissary is anything like the one I used to go to as a kid, then it must have been a great relief to not have to use that cart in those narrow aisles. I'm so glad to hear you are feeling normal. Who knows, maybe you'll even feel up to joining a Lindy Hop club in CA! Then you could really put those new knees to the test!
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Marla,

    All that information you gave us is so interesting! I am always interested in new treatments that just might make life easier I also wanted to tell you that I may be moving to California sometime over the next few months. We will be living in the San Juan Capistrano area. I don't think that is to far from you!!!!! We should have a special meeting with all of us in that area. Are you from California? Tim is and that is why we would be moving. I am a little unsure about the move but life has its own plans for each of us. I really hope you are able to get this treatment and I hope with all my heart that it helps you I will be keeping you in my thoughts and sending you hugs and well wishes. Keep us posted on everything
    As I grow to understand life less and less,
    I learn to love it more and more.

    Age 29, Lupus for last 7 years

    Medications: Methotrexate, Lyrica, Celebrex, Flexeril, Theophylline, Bactrim, Xopenex, Lisinopril, Ultram

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