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Ashleybritton
09-09-2012, 01:38 PM
I carry the SCL-70 antibody so I'm very concerned about developing diffuse scleroderma. Prior to seeing the rheumatologist I did some research and it seems as though people on the scleroderma forums are having success with stem cell therapy. Particularly with Dr. Burt in Chicago (he also has a protocol for SLE). However, when I brought it up to my rheumy she thought it was a terrible idea. :-(

Apparently people have died from this which is obviously not good!! I'm okay with living with SLE, but I'll be honest...the possibility of scleroderma has me terrified and contemplating this if it develops. Anyways, all that to say, has anyone on this forum done stem cell therapy?

I'm sorry to be asking so many questions about alternative therapies. Thank you for your help!

jmail
09-09-2012, 02:55 PM
Try not to worry about something until you have to, and even then, take it one day at a time. All therapies have side-effects, some worse than others. I'm not familiar with stem cell stuff, other than it's in its infancy and basically unproven for most applications thus far.

Derrie
09-09-2012, 03:53 PM
Ashley, I'm with jmail on this one-- don't worry about things that are speculation at best! While it's not necessarily a bad thing to think about what your future might hold and how you'll deal with it, getting into the nitty-gritty -- especially regarding experimental, high-risk therapy that is most often used when a disease is refractory to other treatments -- is just going to stress you out. And us AI people really don't need stress on top of everything else.

It's so early since you've discovered something going on, it's totally natural to be thinking like this, but AI diseases are long-haul, chronic illness, and you have to take it one day at a time. So, on that note, out of curiosity, has your rheumatologist given you any sort of firm diagnosis? What symptoms are most troubling to you right now? What sort of treatment has your rheumatologist suggested for treating your symptoms? And what has she suggested for keeping your disease process in check?

My suggestion is to focus on those more immediate questions on how to make your life better right now and how to minimize future problems.

ritzbit2
09-09-2012, 06:56 PM
I have only ever briefly spoken to one woman who did a stem cell transplant and its my understanding she was VERY sick before they went to that. I haven't watched all her videos but here is her youtube channel about her lupus and stem cell transplant. http://www.youtube.com/user/treappling1

Ashleybritton
09-09-2012, 07:24 PM
Ashley, I'm with jmail on this one-- don't worry about things that are speculation at best! While it's not necessarily a bad thing to think about what your future might hold and how you'll deal with it, getting into the nitty-gritty -- especially regarding experimental, high-risk therapy that is most often used when a disease is refractory to other treatments -- is just going to stress you out. And us AI people really don't need stress on top of everything else.

It's so early since you've discovered something going on, it's totally natural to be thinking like this, but AI diseases are long-haul, chronic illness, and you have to take it one day at a time. So, on that note, out of curiosity, has your
rheumatologist given you any sort of firm diagnosis? What symptoms are most troubling to you right now? What sort of
treatment has your rheumatologist suggested for treating your symptoms? And what has she suggested for keeping
your disease process in check?



My suggestion is to focus on those more immediate questions on how to make your life better right now and how to minimize future problems.

I have been given an official diagnosis of SLE because of my ANA (has Smith and DS DNA antibodies as well as many more), even though I feel fine and have no standard out right symptoms. However, during pregnancy they I had proteinuria and low platelets. I still have low platelets, but only trace proteins so even though I don't have joint pain or fatigue my rheumy says we can not ignore that there is organ involvement. All this with a low titre 1:80. She has me on plaquenil and I'll take prednisone when I have a flare up, but I'm not sure how I'll know if I'm having a flare up since I didn't feel the last one! To say I'm shocked is an understatement.

steve.b
09-09-2012, 07:26 PM
please do not worry about what might happen.
live in the now.

what i do know about lupus.....
it becomes much worse when stress is added.
please do not stress over what might happen.
it might not also.

many people carry genes, germs and anti bodies.....
and do not contract the particular problem.

yes it might happen.... but it might not
do not make yourself sicker with worry.

magistramarla
09-09-2012, 09:11 PM
I think that stem cell therapy may well be a great treatment in the future, but a lot of research and experimentation still needs to be done.
Gene therapy may also be a great thing in the future.
There are breakthroughs happening in science all of the time. We just have to be patient.
I hope that the big breakthrough happens in my lifetime, but if it doesn't, I'm hoping that it comes in time to help my children if they develop this crud.
Hugs,
Marla