I have had stem cell treatment for LS, IT WORKS

Posted , 19 users are following.

For all you ladies with LS, I had stem cell treatment in Italy in September 2013, the LS has just started to come back. I had 3 months where the stem cells were kicking in, 12 months relief, and 3 months of i9t wearing off, so now I need more treatment.

The person who first applied stem cell treatment for LS is Dr Frencesco Casabona, who has his practice in Genoa. The actual procedure took 15 or so minutes, I opted for no sedation, so it was a bit painful, but I preferred it that way, and even without the sedative it was totally bearable.

The treatment cost 3,000 euros, plus flights and hotel, so it is not cheap. When you get to Genoa you see Dr Casabona, then next day you go to various places, to have blood taken, to pay for the treatment, its a lengthy process, but not too bad considering the result. Once the blood is processed and ready, you have to undress and gown up, and have the injections. They are not small needles, let me make that clear, but as I said, there are sedatives. Most women have the sedatives. Next morning its back to see Dr Casabona, then in our case we came home.

The treatment works, no doubt about it. No need for the steroid creams, or Protopic, nothing!  Clob, or steroid cream, just thins the skin, and long term use is not good. Protopic is better, it doesnt thin the skin, and is made from an element in a certain soil. The cream is usually used on skin grafts, and in liquid form (I believe) for organ transplants, as it has the ability to repel, or drive back from the surface of the skin, the antibodies that attack it, which cause LS. Protopic is very expensive, my first tube was private, before NICE had approved of it, and 12 years ago it cost me £84 for 30 grammes. It was made by Fujiwasa, who invented it, but now it is made by other companies.

Protopic, is, in my opinion, as a sufferer for over 20 years, far superior to Dermovate, but as I said, less prescribed, it is expensive.

I get itching in the LS area after I have drunk or eaten certain things, chocolate, cola, citrus fruit, tap water (yes, tap water, which is cram packed with cleaning chemicals and aluminium, apart from hormones from the pill) and before I went through the change with a certain famous brand of sanitary towel, which ALWAYS caused me to itch. I think there are too many chemicals in sanitary towels, (similar to  cat litter) and would advise any woman to try to buy pure cotton. I am not saying any of these things cause LS, but they certainly aggravate it. So, next question is could I have sex after stem cell treatment, well I think I coulod have, but I also have more recent severe back problems which have caused my pelvis to slip, so I wouldnt have been able to anyway. I lost a man, my mind and hope with LS, also my sex life, my pride and my femininity, or thats how it felt for a long long time. I wouldnt hesitate to say to a daughter, if I had one, go have the stem call treatment. The cost is the bummer, we need to lobby Parliament, is anyone out there in agreement?

6 likes, 61 replies

Report

61 Replies

Prev Next
  • Posted

    As for money, I have worked hard all my life, and tried everything to get better, the money I spent was, believe me, hard earnt.
    Report Reply
  • Posted

    Hi loupielou, I was very interested in reading your post and how you found the Stem Stella treatment, as we are always reading about the procedure, I do agree that it will come available in the UK in fact I have seen a comment from a lady in the UK that is having this very shortly at the free hospital in London and she is having it done on the .nhs, I am sure it will only be given for the people that an not get it under control and that have a lot of scaring, but the exciting thing is it sounds like it is close to becoming a option. 
    Report Reply
    • Posted

      Hopefully Rose, hopefully, I am trying to contact the Royal Free to find out, as I was actually diagnosed there many years ago, when LS was virtually unheard of. To anyone who can afford a stem cell teeatment, I would say have it done, even if it only gives you a year of peace and freedom, it helps.

      Report Reply
    • Posted

      Hi imoffoutofhere

      I have following the posts and saw the info on the The Royal Free hospital. I have sent them an e-mail in regards to the possibility of treatment. I am sure that it would have a good impact, if everyone e-mailed them, don't you think? 

      Report Reply
  • Posted

    Lou, thanks so much for your thorough report on this cutting edge experimental treatment. You've done us all a service. I seemed to be resistant to clobetsol so I'm on Protopic, which isn't that much more expensive than Dermovate in Canada. I think I have the lifelong slow-moving form of LS. Now that I'm a) being treated and b) celibate, I have almost no discomfort at all and my atrophy isn't progressing.

    There are many young women whose LS moves scarily agressively so the hope of stem cell treatment being provided in regular clinics in the future must feel good to them.

    Report Reply
    • Posted

      With stem cell treatment you might well be able to regain your sex life again, but we know sex is not the only reason here, its the damned itching and soreness. It gets you down. I am looking at more stem cell treatment, if I have to pay I will, with reluctance, rather than let the disease wreak more irreversible damage. Stem cell treatment works, thats the main thing, its progress is a beacon of hope for the future for all of us, rich, poor, black, white or yellow, someone must put a toe in the water, if no one pushes this, we will still all be at the starting line waiting.
      Report Reply
    • Posted

      Hi Morrell,

      I've come across Protopic a few times on this forum/in my reading on LS. This might be a silly question but.. What's the difference between clob and protopic? I've read a few places mention it is linked to skin cancer/malignancy but no idea how common this is. How long were you on steroid treatment before your doctor switched you to this?

      Report Reply
    • Posted

      Hi Jules,

      I was on Dermovate 18 months. Steroid ointment treats the inflammatory cells at the bottom of the thickened skin LS grows. Thining is only an issue if you let it get on healthy skin. Any side effects you read about for tacrolimus are from large oral doses for the pevention of transplant rejection. The tiny dose of topical tacrolimus (Protopic) carries none of those systemic risks. It seems the main reason doctors prescribe clobetasol first is cost. Some countries (not mine) have ridiculously high prices for it.

      Protopic is primarily prescribed for eczema. I found this:

      A new, well-written report debunks [the 2005 claim that it can cause cancer] thoroughly.

      Written by two researchers at Saint Louis University in Missouri and UT Medical School in Texas and a science writer in Chicago, and published in the American Journal of Clinical Dermatology, the paper points out that the FDA’s 2005 advisory was based on three justifications: extensive off-label use to treat children under two years old; a very small number of adverse drug reports (two for Elidel and five for Protopic); and a study done in monkeys in which the animals were given much larger doses than would be typical for human patients.

      Now, eight years after the first FDA warnings appeared, the authors say that use of these creams has not been shown to increase a patient’s risk of developing any type of cancer.

      Elidel (pimecrolimus) and Protopic (tacrolimus) are “calcineurin inhibitors” formulated as creams. They reduce the levels of pro-inflammatory molecules produced by T cells. With all immune-suppressant drugs there is always a possibility that the drug will prevent the body from destroying cells that have become malignant. But Elidel and Protopic do not raise the risk above the background level.

      Unlike topical steroids, calcineurin inhibitors do not thin the skin, and patients who use them apparently do not experience a “rebound” effect in which the eczema returns after drug use stops, as is the case with steroids.

       

      Report Reply
    • Posted

      One thing I would say is use the protopic sparingly, dont go in gung ho with 0.1%, get 0.03% and use this for a few days, then blend the two, then go on the 0.3%, it saves a lot of discomfort if you build the strength up gradually, else it will burn like hell for a few hours, because of the place its being applied x
      Report Reply
  • Posted

    I was on the brink of having this stem cell treatment myself, but am bitterly disappointed to learn that it only lasted one year!  Sorry to say it, but for me this spells failure and I shall now wait and hope that the specialists in this field come up with something a little more permanent - or is this being too optimistic!   Take good care of yourself!
    Report Reply
    • Posted

      My point exactly.  I just think taking $3,250 off someone and then telling them that they will have to return in a year if they want it to last, is kind of wrong, immoral even. 
      Report Reply
    • Posted

      I know where you are coming from Wendy, and if this treatment were free, it would just mean an annual visit for the injections. So, the treatment is there, it works, and if it were available on the NHS you would be fine? That day will come, and you will be treated I am sure. The NHS were in contact with Dr Casabona, the man who pioneered this treatment, because he told me so, lets hope it doesnt take too long before we can all be treated on the NHS.The treatment only takes 10 to 15 minutes to perform, not a long time for a years relief 😃
      Report Reply
    • Posted

      Guppy, only a total idiot would have the treatment and then be told it will only last a year....I had this treatment in the knowledge it was not permanent, but as you wrote earlier, you are happy with clobetasol, I was not. As for immoral, yes if I had learning difficulties and was duped it would be, but I am actually quite intelligent, no one lied to me, and exactly what I was told happened, the Doctor said it usually lasts about 18 months, it lasted 15 good, and 3 as it is wearing off. What the stem cell treatment does is halts the destructive nature of LS, I have had over a year in which there has been no progression in the damage from LS. I know a lot of women will say its too expensive, I agree, it is, but I bet when the Nhs do start to do this free of charge you will be at the front of the queue every year.
      Report Reply
  • Posted

    Those who can affort, historically, have always paved the way for those whose financial means are less.  Some examples:  Owning a car, flying by plane, having pictures taken/paintings.  If stemcell treatment reaches a better level of healing and is able to give some garantee that it will last more than a year, insurance companies may also be willing to absorb it in their packages.  Hence it will become common place for all.  

    So, Loupielou,  pave the way!  

    Report Reply
    • Posted

      Hanny, thank you. I am not rich, I was willing to undergo the treatment, and pass on the e perience. I purposly didnt have any painkillers or tranquilisers so I knew exactly what was going on. There was no one pulling the wool over my eyes, I knew before I went that the treatment lasts up to 18 months, more or less. It was wonderful to actually forget I had LS for 15 months. I have had this illness for a long time, and was overjoyed that there was someone in the medical profession who was giving their time to research the use of stem cells on LS, I had prayed for the day when all women can have this treatment free in the UK, I still do. Do I feel let down because the effects are wearing off? NO, NOT ONE BIT. I am grateful there is, maybe not a cure, but at least a solution to this vile disease. My prayers have been answered, almost. Someone has recognised our illness, and is trying their damnedest to treat it.

      Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up