Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hi All, I have had severe RA for 20 yrs and had pretty much run out of options. My hands are badly crippled and my feet and ankles...well..they are bad. One ankle has been fused twice which has now caused the metatarsal heads of my toes to protrude through the bottom of my foot now requiring more surgery....so fusion will not be an option for me on the right foot. It makes sense...if you fuse the ankle, FURTHER movement causes more pressure in front of and behind the fusion AND CAUSES DAMAGE. This then can and many time does, result in the need for a second fusion. Unfortunately even the surgeon who performed both surgeries FROM MAYO CLINIC)didn't advise me of this... Back to Prosorba... Desperately seeking remission from raging RA, I went to s Hopkins Rheumatology last year, who only offered the standards meds...the same meds that caused me hospitalization due to infections. No one offered Prosorba treatment to me, and sadly I believe that many of you are not offered this treatment approved by the FDA for the treatment of RA in 1999. Hershey Medical Center was finally the hospital of choice, and great rheumatologist I found there too. I will not go into great detail here unless I hear pf anyone interested. But basically I went once a week for 12 weeks to have apharesis..they removed my blood from one arm, separated plasma from red blood cells by a machine, a by filtering through the Prosorba column, removed the RA antibodies. They then returned the cleansed plasma/red blood cells to me through the other arm, which only took about 3 hrs or so. For a few days after, I felt pretty bad but the side effects did getless and less. Now to spice this story up, my husband left me following treatment #6 and although devastated (he was also a RN)...only through the help of my faith and my Priest, friends, the Rheumatologist and the blood bank Physicians, I persevered through the 12th treatment which occurred yesterday....I DID IT AND I AM SO VERY PROUD OF MYSELF....This treatment lowered my RA factor almost 200 points during this time....nothing has ever done this in 20 yrs!!!! So if you would like more info, please feel free to ask... With my new revived body and spirit, I have volunteered to the Arthritis Foundation as well as Hospice so that I may finally do something for someone else......... A lot of prayer, faith and hope were definitely part of this plan..HOPE I CAN HELP SOME OF YOU... Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Hi All, I have had severe RA for 20 yrs and had pretty much run out of options. My hands are badly crippled and my feet and ankles...well..they are bad. One ankle has been fused twice which has now caused the metatarsal heads of my toes to protrude through the bottom of my foot now requiring more surgery....so fusion will not be an option for me on the right foot. It makes sense...if you fuse the ankle, FURTHER movement causes more pressure in front of and behind the fusion AND CAUSES DAMAGE. This then can and many time does, result in the need for a second fusion. Unfortunately even the surgeon who performed both surgeries FROM MAYO CLINIC)didn't advise me of this... Back to Prosorba... Desperately seeking remission from raging RA, I went to s Hopkins Rheumatology last year, who only offered the standards meds...the same meds that caused me hospitalization due to infections. No one offered Prosorba treatment to me, and sadly I believe that many of you are not offered this treatment approved by the FDA for the treatment of RA in 1999. Hershey Medical Center was finally the hospital of choice, and great rheumatologist I found there too. I will not go into great detail here unless I hear pf anyone interested. But basically I went once a week for 12 weeks to have apharesis..they removed my blood from one arm, separated plasma from red blood cells by a machine, a by filtering through the Prosorba column, removed the RA antibodies. They then returned the cleansed plasma/red blood cells to me through the other arm, which only took about 3 hrs or so. For a few days after, I felt pretty bad but the side effects did getless and less. Now to spice this story up, my husband left me following treatment #6 and although devastated (he was also a RN)...only through the help of my faith and my Priest, friends, the Rheumatologist and the blood bank Physicians, I persevered through the 12th treatment which occurred yesterday....I DID IT AND I AM SO VERY PROUD OF MYSELF....This treatment lowered my RA factor almost 200 points during this time....nothing has ever done this in 20 yrs!!!! So if you would like more info, please feel free to ask... With my new revived body and spirit, I have volunteered to the Arthritis Foundation as well as Hospice so that I may finally do something for someone else......... A lot of prayer, faith and hope were definitely part of this plan..HOPE I CAN HELP SOME OF YOU... Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Thank you for sharing your inspiring story, Joanne. May God bless you and keep you. Stay strong! Sierra > > Hi All, > > I have had severe RA for 20 yrs and had pretty much run out of options. My hands are badly crippled and my feet and ankles...well..they are bad. One ankle has been fused twice which has now caused the metatarsal heads of my toes to protrude through the bottom of my foot now requiring more surgery....so fusion will not be an option for me on the right foot. It makes sense...if you fuse the ankle, FURTHER movement causes more pressure in front of and behind the fusion AND CAUSES DAMAGE. This then can and many time does, result in the need for a second fusion. Unfortunately even the surgeon who performed both surgeries FROM MAYO CLINIC)didn't advise me of this... > > Back to Prosorba... Desperately seeking remission from raging RA, I went to s Hopkins Rheumatology last year, who only offered the standards meds...the same meds that caused me hospitalization due to infections. No one offered Prosorba treatment to me, and sadly I believe that many of you are not offered this treatment approved by the FDA for the treatment of RA in 1999. Hershey Medical Center was finally the hospital of choice, and great rheumatologist I found there too. > > I will not go into great detail here unless I hear pf anyone interested. But basically I went once a week for 12 weeks to have apharesis..they removed my blood from one arm, separated plasma from red blood cells by a machine, a by filtering through the Prosorba column, removed the RA antibodies. They then returned the cleansed plasma/red blood cells to me through the other arm, which only took about 3 hrs or so. For a few days after, I felt pretty bad but the side effects did getless and less. > > Now to spice this story up, my husband left me following treatment #6 and although devastated (he was also a RN)...only through the help of my faith and my Priest, friends, the Rheumatologist and the blood bank Physicians, I persevered through the 12th treatment which occurred yesterday....I DID IT AND I AM SO VERY PROUD OF MYSELF....This treatment lowered my RA factor almost 200 points during this time....nothing has ever done this in 20 yrs!!!! > > So if you would like more info, please feel free to ask... > > With my new revived body and spirit, I have volunteered to the Arthritis Foundation as well as Hospice so that I may finally do something for someone else......... > A lot of prayer, faith and hope were definitely part of this plan..HOPE I CAN HELP SOME OF YOU... > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2004 Report Share Posted November 13, 2004 Thank you for sharing your inspiring story, Joanne. May God bless you and keep you. Stay strong! Sierra > > Hi All, > > I have had severe RA for 20 yrs and had pretty much run out of options. My hands are badly crippled and my feet and ankles...well..they are bad. One ankle has been fused twice which has now caused the metatarsal heads of my toes to protrude through the bottom of my foot now requiring more surgery....so fusion will not be an option for me on the right foot. It makes sense...if you fuse the ankle, FURTHER movement causes more pressure in front of and behind the fusion AND CAUSES DAMAGE. This then can and many time does, result in the need for a second fusion. Unfortunately even the surgeon who performed both surgeries FROM MAYO CLINIC)didn't advise me of this... > > Back to Prosorba... Desperately seeking remission from raging RA, I went to s Hopkins Rheumatology last year, who only offered the standards meds...the same meds that caused me hospitalization due to infections. No one offered Prosorba treatment to me, and sadly I believe that many of you are not offered this treatment approved by the FDA for the treatment of RA in 1999. Hershey Medical Center was finally the hospital of choice, and great rheumatologist I found there too. > > I will not go into great detail here unless I hear pf anyone interested. But basically I went once a week for 12 weeks to have apharesis..they removed my blood from one arm, separated plasma from red blood cells by a machine, a by filtering through the Prosorba column, removed the RA antibodies. They then returned the cleansed plasma/red blood cells to me through the other arm, which only took about 3 hrs or so. For a few days after, I felt pretty bad but the side effects did getless and less. > > Now to spice this story up, my husband left me following treatment #6 and although devastated (he was also a RN)...only through the help of my faith and my Priest, friends, the Rheumatologist and the blood bank Physicians, I persevered through the 12th treatment which occurred yesterday....I DID IT AND I AM SO VERY PROUD OF MYSELF....This treatment lowered my RA factor almost 200 points during this time....nothing has ever done this in 20 yrs!!!! > > So if you would like more info, please feel free to ask... > > With my new revived body and spirit, I have volunteered to the Arthritis Foundation as well as Hospice so that I may finally do something for someone else......... > A lot of prayer, faith and hope were definitely part of this plan..HOPE I CAN HELP SOME OF YOU... > Joanne Quote Link to comment Share on other sites More sharing options...
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