Kristin G.
New member
Hi everyone
Not many people die directly of RA, but I'm told that will happen to me without intervention. My disease is severe and refractory. Not something I want to hear, but my rheumatologist tells me it's the worst he's seen. I have developed serious antibodies to biologics and DMARD's don't work for me. That leaves Prednisone which brings on a host of side effects. My body sucks but my brain is still good so I am researching, seeking before this disease knocks out my internal organs too! Have lots to live for still! And if I can get the inflammation under control I am out and about enjoying life! In a few weeks my husband and I will be celebrating our 30th anniversary so I am very blessed to have had a partner who has stood with me through many years (20) of illness, pain and multiple surgeries.
I've been in contact with Dr. Burt in Chicago where they treat RA with a complete allogenic stem cell treatment. That is the riskiest, most expensive option I've seen (probably the best available though and he is very experienced)... But Up to 200k USD (if all goes well and if I have a sibling donor match) and I'm Canadian...no insurance in US. I cannot find any stem cell treatment in Canada. I've looked into StemGenex in LA, that's autologous, not FDA approved, not sure of results, mostly anecdotal. I was excited about Tigenix in Belgium. They were developing a stem cell treatment for RA. Clinicals trials were done on patients with severe RA, but now that they are trying to bring it to market they are targeting newly diagnosed RA patients and not answering my emails. I've considered the stem cell institute in Panama but read mixed reviews about mesenchymal stem cell transplants.
I'm also interested in finding out effective stem cell treatment for OA in my hip and knee so I can avoid more surgery!
So any advice and direction would be much appreciated here! I am on my own researching so I need all the help I can get! Does anyone have any other ideas, direction, experience, knowledge they can share with me?
Thank you!
Not many people die directly of RA, but I'm told that will happen to me without intervention. My disease is severe and refractory. Not something I want to hear, but my rheumatologist tells me it's the worst he's seen. I have developed serious antibodies to biologics and DMARD's don't work for me. That leaves Prednisone which brings on a host of side effects. My body sucks but my brain is still good so I am researching, seeking before this disease knocks out my internal organs too! Have lots to live for still! And if I can get the inflammation under control I am out and about enjoying life! In a few weeks my husband and I will be celebrating our 30th anniversary so I am very blessed to have had a partner who has stood with me through many years (20) of illness, pain and multiple surgeries.
I've been in contact with Dr. Burt in Chicago where they treat RA with a complete allogenic stem cell treatment. That is the riskiest, most expensive option I've seen (probably the best available though and he is very experienced)... But Up to 200k USD (if all goes well and if I have a sibling donor match) and I'm Canadian...no insurance in US. I cannot find any stem cell treatment in Canada. I've looked into StemGenex in LA, that's autologous, not FDA approved, not sure of results, mostly anecdotal. I was excited about Tigenix in Belgium. They were developing a stem cell treatment for RA. Clinicals trials were done on patients with severe RA, but now that they are trying to bring it to market they are targeting newly diagnosed RA patients and not answering my emails. I've considered the stem cell institute in Panama but read mixed reviews about mesenchymal stem cell transplants.
I'm also interested in finding out effective stem cell treatment for OA in my hip and knee so I can avoid more surgery!
So any advice and direction would be much appreciated here! I am on my own researching so I need all the help I can get! Does anyone have any other ideas, direction, experience, knowledge they can share with me?
Thank you!
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