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
imoffoutofhere
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Roselee imoffoutofhere
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imoffoutofhere Roselee
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pollygale69 imoffoutofhere
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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?
Morrell1951 imoffoutofhere
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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.
imoffoutofhere Morrell1951
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jules1100 Morrell1951
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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?
Morrell1951 jules1100
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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.
imoffoutofhere Morrell1951
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imoffoutofhere
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wendy14679 imoffoutofhere
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Guppy007 wendy14679
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imoffoutofhere wendy14679
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imoffoutofhere Guppy007
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hanny32508 imoffoutofhere
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So, Loupielou, pave the way!
imoffoutofhere hanny32508
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mimi52218 imoffoutofhere
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