stem cell transplant or therapy

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I wanted to say that my regular gynocologist shared with me when she diagnosed LS, that she has a patient, who went to Italy, for sometype of stem cell therapy. I do not know what happened, in terms of results, but plan to ask, the next time I see her. I am in the US. Has anyone heard anything about this treatment? It may seem radical, but I understand why one would do it. It probably is expensive, and not covered by insurance. I would like to know, though.   Cynthia

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  • Posted

    If you google it you will find info about a doctor in Italy who carries out SCT, but I go to the royal free hospital in London and was told they do the procedure there if you have LS badly by the vulvar specialist I last saw.  I've heard the results are very good. I've also read of doctors in LA doing proceedure. Sorry I don't have details but sure info will be readily available on internet.
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      Would  you say what proceedure is being done?  Is it injections of stem cells?  Where?  Right into the LS, or just an injection, like any shot in the arm?  I have never heard of SCT being used for LS.  Thank you for any information you share...
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    • Posted

      Yes injection of stem cells into the LS. If it's really bad they can do the proceedure more than once to completely get rid. I guess it's a pricey proceedure but you could try ringing the hospital to see if they will give you more info. 

       

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    • Posted

      thank you for your reply.

      I go back to my vulvar specialist in a couple of months.  I will ask her about such a treatment.

      I am guessing these are not plant stem cells, but embryo.  I thought such treatments were still in the research stage.  I will do some research on the research.  I am in the US, by the way.

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    • Posted

      Thanks Claire, I am so glad to hear that the results are good. I will research L.A. doctors. How is gouing to a vulvar specialist better. Do they offer anything different than a gyn or dermatologist? I found one in Phoenix ,and would consider going, but I wonder what would be offered that I haven't already heard. I see a dermatologist in Orlando, who has studied under another doc. who specializes in LS, but she offers nothing more than the steroid med. and no helpful hints or suggestions, like I am getting from this support group. I do not want to get hopes up, if the vulvar specialist in AZ. has nothing more to offer.  Just wondering......   Thanks
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    • Posted

      Hi Patricia, I am in the US as well. If you find any info on L.A doctors, I would like to know.I live in Florida. There are few vulvar specialists in this country, I am told. Where did you find one? I found one in Phoenix.May consider going, but wonder if they have any additional knowledge or treatment, other than steroid cream?   Cynthia
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      Hi Cynthia,   I am in the Smoky Mtns, in North Carolina.  I found two vulvar clinics close by.  I was pretty surprised myself, as I was thinking I would only find such a specialist in maybe California, Atlanta, etc.  However, the one I chose was in Greenville, SC...and the only reason I chose her, was the other nearby one, in Asheville, NC., didn't have an available appt for several months, and I was too desperate to wait, so I took the first appt I could get.  I think a lot of the difference (for me) in the difference between the ob/gyn who had been treating me, and the vulvar LS specialist, was my confidence in her.  I had begun to not really trust the ob/gyn.  And when she started suggestion surgery in the near future, I panicked.  I also found out after seeing the specialist, that the first dr. was giving me bad advice.  The first dr. told me to use the clobetasol every day if I wanted, and even more than once through the day if I had anything bothersome going on.  So, I did that, every time I felt itching or that pinging sort of irritation and soreness.  By the time I went to the specialist, I found out the clob. had caused irreparable damage.  The new dr. switched me to a milder steroid and told me exactly where to put it and not to put it all over the area.  Also, the first dr. told me LS does not affect the anus, and I found out it does.  So, it seems I relaxed quite a bit after the visit with the specialist and I am very, very glad I decided to go to her.  Her clinic is more than 2 hrs from my town, but it is worth it to me to take the trip.  Besides, I live in a pretty small town, and in the "big" city of Greenville, there are art stores where I can buy paint and brushes and all sorts of art supplies!!  Double win!!

      Oh!  I should say this:  I put Vulvar Specialists in my search engine and my town, and all sorts of options popped up.  I was very surprised indeed.

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    • Posted

      Hi Claire, what's the name of the specialist you see? What department should I reach out to royal free hospital. It'd be good to see a doctor with some experience in LS for a change.
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    • Posted

      Hi Cynthia I leave in Orlando too and j was looking for a vulvar specialist as well.. My dermatologist seems to know about LS but I would be more comfortable if I could see a vulvar specialist.
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    • Posted

      The derm. doc in Orlando that sees many people with this, is Kathryn Zendell. She does biopsies and offer chlobetasol, so far. I would also like to see a vulvar specialist.Finding one that really deals a lot with this, and can offer a different treatment or insight would be worthwhile.It can be expensive and frustrating to travel to see someone. I had a hard enought time getting to Orlando, from Ft. Myers. Not an easy trip. Have to go thru Orlando to get to her office, in Longwood. Maybe for you it would be convenient though.She does see people from all over the country though,and has a very good reputation. Cynthia
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    • Posted

      have you used the chlobetasol ointment? Did she do a biopsy?I know there is someone else in this discussion,who found a vulvar special in Greenville,and Ashville, North Carolina. I also found one in Phoenix. Wondering about University of Miami? It would be nice to find one who is close, but who is good.Let's keep researching that topic and sharing. Cynthia
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    • Posted

      I have the biopsy done by my urogyn, found Dr zendell searching through the internet. I bet that Miami would have an experienced doctor.. But like you said should be someone that would worth to go for
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    • Posted

      Hi Cynthia. 

      I've only been twice to RF hospital and initially saw Wendy Reid - I don't know her official title. When I went back I saw a different doctor who was described to me as a vulvar specialist. I really don't know the difference. All I know is that the RF hospital clinic is supposed to be the top place in the country for LS (this is what a nurse told me there) and it was this vulvar specialist doctor that confirmed they do the stem cell proceedure there.

      x

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    • Posted

      hi Claire, Is RF the hospital in the UK that has been mentioned by others?Is it a true hospital or is it a medical office? I found a doctor in L.A., who does the stem cell therapy. One of his patients was on the TV showcalled The Doctorsin the U.S. I googled doctors Los Angeles, stem cell therapy Lichen Planus, and this you tube video from that show came up. It was a young girl who became afflicted with LS after having her first child. She was miserable, and then she found this doc , did the stem cell, and is doing great! Very inspiring story. I am going to start a discussion on what I found out, after calling his office. Would you be able to get the Treatment in the UK  for free? It can be up to $10,000 here, and insurance does not cover it.    Thanks Claire
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    • Posted

      Hiya,

      Royal Free is a one of London's leading hospitals dealing with everything. I think you could possibly get proceedure done on NHS if it was very bad but otherwise  you would probably have to pay for it. I know they don't just offer it to everyone. I think if it was properly effecting your quality of life they might consider a patient but I really don't know to be honest. Sorry!

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