Has Stem Cell Therapy been offered to anyone in the group? Does anyone know any information on whether it would truly work on us? One of my Doctors has asked me to think about going to Colombia in South America for Stem Cell therapy.  I wanted to find out more information to see if anyone has tried it. If it is even thought to work.

Thank you for your time,

Shannon leaker since  8/2010

Stem cell therapy for what, exactly? Did he/she mention anything specifically? When I first got sick, a doctor mentioned stem cell therapy as well, but didn't go into specifics. He just mentioned it, as though it was a specific therapy for this condition (it's not). I don't think the average physician has much of a clue about capillary leak syndrome and when they don't understand something they often just toss random ideas at you without any real understanding of what they're talking about. At least that's been my experience. I notice in your bio that you also suffer from carcinoid syndrome. Have your doctors ever linked it to your capillary leak condtion?

If anything, stell cell therapy has been reported to cause SCLS. See here: http://www.bloodjournal.org/content/115/13/2723?sso-checked=true

Anthony

I agree with Anthony.  Moreover, going to Colombia for stem-cell therapy strikes me as a particularly exotic suggestion.  I recommend that you have a physician you trust get in touch with Dr. Druey at NIH to ask his opinion on the matter.

There was a published case some time ago where it was used and successful (would have to look up the reference).  From a theoretical point of view it does make sense (to me at least) as it effectively removed your own immune system ands replaces it with stem cells.  Given that as far as we know SCLS is causes by some aberrant aspect of the immune response it makes sense that it could/should work.

However stem cell transpants are very risky and a complex procedure - is it worth the danger when there is a very good, far less risky treatment i.e. IVIG.  Stick with the tried and tested treatment.

Hi I had a stem cell transplant October last year (2018). This was done because my ISCLS had turned into Myeloma. I am in the process of cutting down on my IVIG,  however it’s been two months now and I am not sure it is working as over this last month I have felt like my legs have been swelling? My haematologist is monitoring me closely through this process so I guess only time will tell. 

My Myeloma is now back to smouldering after a year and three months of treatment which consisted of roughly 8 months is chemo, stem cell transplant and then three months of consolidation chemo. 

Its wonderful to feel well again.

Ruth (NZ)