I have had stem cell treatment for LS, IT WORKS

Women's health
1

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?

2

so stem cell is not a prenament cure is that correct  i am in australia so they dont do stem cell treatment here either

3

It's the price tag that will prevent many to go for stem cell treatment.  And what I don't like at present is that, not only does it cost an arm and a leg, your story tells me that you need more treatment after 12 months.  Does that mean you have to dish out another 3000 euros plus airfare and hotel expenses?  

Which insurance will go pay for this?  

4

It's the price tag that will prevent many to go for stem cell treatment.  And what I don't like at present is that, not only does it cost an arm and a leg, your story tells me that you need more treatment after 12 months.  Does that mean you have to dish out another 3000 euros plus airfare and hotel expenses?  

Which insurance will go pay for this?  

5

Thank you for your very detailed and emotional post. How fantastic it worked, sure you will give others a much needed boost! I am under the Royal Free Hospital in London and was told that they do stem cell treatment there. I didn't ask if you had to pay for it tho.

xx

6

Hi there,

Yes, it means that in my case I am in need of new treatment, and yes its so expensive. Agree totally. What you have to imagine is the cells that are injected into the affected areas will themselves come under attack in time, so in a way it is a barrier, and stops the antibodies from getting to the skins surface, until the transplanted cells are also attacked and the disease begins to cause trouble again. For me, and I can only speak for me, I had extensive damage, because the treatments were not there. I have only used Dermovate a few times, that was a road I was reluctant to take, because a friend of mine had told me it thins the skin, which was the last thing I wanted in that area. I did have a Fentons procedure privately, to remove the tight skin at the entrance to the vagina, but this is not as far as I know done on the NHS.

As you quite righly say, an arm and a leg, we need to make the NHS aware of the need for stem cell treatment for LS. When I was first diagnosed the figure for occurrence of LS was put at 1 in 3,000. Now that figure is 1 in 60. Until the last couple of years most Gp's didnt know what LS looked like, so you were sent away with Canestan.

7

Hi,  After paying what you have paid, I would frankly expect long term relief not just for 12 months, and so in my view it doesn't  really work because it doesn't last. It is also very likely that a lot of women cannot afford to pay this kind of money  every 12 months, plus it sounds like you haven't been able to resume your sex life after the treatment, which is surely one of the key reasons why a lot of women would go ahead with this treatment in the first place.  

In addition, you mention that Protopic is far superior than Dermovate which is what the majority of the women here on the site use, due to the fact that Protopic is so expensive.

Your views and comments are fine if money is no object with regard to treatment, however, sadly this isn't the case for the vast majority of women.

8

The stemcell treatment is nicely on it's way to find a cure.  Thank you for explaining.  Yet, the medical world is not entirely there.  Those who can afford should if they wish take advantage of the knowledge, though limited.  Perhaps in time the procedure can be advanced this way.  

9

GUPPY, in reply to your comments, are you in the USA? In the UK Protopic is now freely available on the NHS, though before it was passed for general use I paid for it, because a specialist explained the advantages of Protopic, and considering a 30 gram tube lasts for months, maybe a year, it was not expensive compared to the stress and itching. I couldnt reply on sexual matters because my pelvis is now twisted, meaning for me it is physically impossible to have sex, LS is not the only reason women cant have sex. I always try to be totally honest, and do I think had I been physically able to have sex, yes, I think the LS has improved enough for that.

In the USA Nathan Newman does stem cell treatment, he charges a one off fee, you can go back as many times as you like. For me the improvement I experienced was worth the money, though on an annual basis yes it is too expensive, but if women like me do not pay for treatment in the early stages, then the development of the stem cell treatment will not go forward. I feel a lot of aggression from your post, I have been in your shoes, for me to have sex I would need a spinal operation that is life threatenning, as I am now over 60, I am not prepared to take the risk, to my surgeons relief!

10

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.

11

Your so right, and I woyld like to know what it would take to get up a petition to ask the PM can we have this treatment on the NHS.

12

Claire, can you give me more info, I was first diagnosed at the Royal free, it would be ideal for me to go back there

13

The day is not too far away when stemcell for LS is available on the NHS. The point to be made is not how much it costs, but that there is a way of dealing with it which gives satisfactory results, I have prayed for that day as I am sure we all have, just imagi e a once a year trip to the clinic to repeat the stem cell treatment, all on the NHS, that will be as near to a cure as any of us dare wish, please God

14

loupielou, I am quite happy with how I am managing my LS using Clob and other non-steroid creams, and I was actually speaking in general terms in response to your original post.  

It sounds like you have had a hard time with LS, and I wish you well.

15

It is not a cure sadly Christine, it is a temporary way of protecting the skin tissue from antibodies by i jecting stem cells into the affected area, so for a time you are cured, until the skin starts to be attacked again. But, if you are injected on a regular basis, it would seem permanent, if you understand. The treatment is far too expensive, but like everything else, with time and demand, it will, or should get cheaper, be available on health insurance, or free on the NHS, that day will come, but how long will depend on how much of a stink we kick up.

16

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. 

17

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.

18

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.

19

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.

20

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!