Stem cell treatment

[Kc_1411]

Hi all just had a quick question if anyone has had a stem cell transplant ( I think that's what it's called) have you had any success what was ur experience?? Any information would really be appreciated

Thank you all

[zenabb]

My cousin in America had a stem cell transplant 10 years ago. From a vey sick person on constant oxygen she is now cured healthy and happy. But the preparation beforehand was complicated and well worth it.

[Kc_1411 in reply to zenabb]

Thank you my husband is at a very severe stage of his scleroderma we're we don't know what to do I've only heard little about this treatment but heard it's very risky thank you for your message x

[Cole57]

Hi I myself was offered this treatment and it usually only offered here in the Uk as a last option. The reason being the process of stripping away all your antibodies is very serious because the risks of infection are high. Also the process of then putting the good antibodies back is another process. The risk with the treatment is it could work permanently or it could just work for a short period of time. You have to weigh up is all that you go through with the treatment worth it if the disease only goes away for a short period. The drs won't be able to tell you if it will or won't come back because everyone is different. I had to think long and hard about weather to do the treatment. After a good talk with my consultant at The Royal Free we decided I had other options and that the Stem Cell Transplant would only happen if nothing else worked. For me that was the best advice as they have now discovered that I have heart involvement. I would seriously say to you and your husband to talk to your consultant about the transplant procedure and ask to talk to others who have had it done personally. Goodluck with what you and your husband decide to do going forward.

[Kc_1411 in reply to Cole57]

Thank u x

[Kc_1411 in reply to Cole57]

Do you know if this treatment is free or is there a charge? If so how much? have tried to research it but I'm getting many different prices. I hope you don't mind me asking but how many years have u been with this illness ?

[Cole57 in reply to Kc_1411]

In the U.K. under my consultant at The Royal Free I was going to be treated for free as I'm an NHS patient but I do know they do private consultations as well which do cost. So not sure how much such treatment would cost. I think you can actually talk to the hospital and find out.

As for how long I've had Diffuse Systemic Sclerosis it's been a year and a half I was diagnosed last March and it had only just begun. So unfortunately mine has been a very quick progression and they are still struggling to slow it down. My immune system seems to be a fighter. But I'm remaining positive that the right drug will be found to slow it right down. It's a case of trial and error because everyone's immune system is so different. How long has your husband had the disease for and which strain?

[Kc_1411]

He has had scleroderma for around 15yrs it is really effecting him physically the most. we will also speak to his doctor at royal free just waiting on his appointment as you know they are very busy. Just hope there is something that will work I don't think this is an option now as he has had this Many years and is too much of a risk.

[Cole57 in reply to Kc_1411]

I would say don't give up hope because there are drugs coming out of trial all the time for the disease. So the Royal may suggest something new that your husband may never have tried. But when you see your consultant at The Royal talk through everything. Ask if you can speak to any of their patients that they have done the transplant on. But I do know there aren't many as it really is a last resort with them just because the outcome is so unpredictable. But thankfully your husband is in the best possible hands and if there's an answer they will have it.

[Kc_1411]

Thanks for all your advice x