Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi Joanne I am so glad you are telling us about this! I've only ever seen one patient on this, and as she wasn't my patient, I didn't know why she was getting it or any other details. Just reminded me of dialysis a little. So the big question is: How are you feeling? and How do you feel when receiving the treatment? Do you get light-headed? Does your blood pressure go down like it can with dialysis? Details, I must have details! :>) Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Hi Joanne I am so glad you are telling us about this! I've only ever seen one patient on this, and as she wasn't my patient, I didn't know why she was getting it or any other details. Just reminded me of dialysis a little. So the big question is: How are you feeling? and How do you feel when receiving the treatment? Do you get light-headed? Does your blood pressure go down like it can with dialysis? Details, I must have details! :>) Cary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Is this " plasmaphoresis " ? I have heard of this....was curious about it, but does it require future treatments as well? - In , " easyspirit13@n... " <Easyspirit13@n...> wrote: > > > Hi > > I started the Prosorba column last Thursday at the Hershey Medical Center in PA. > > Medicare & AARP do pay for it...at least in some cases as they are paying for > mine. I know that each column runs about $1,000 for the column itself and that > does not include the Blood Bank staff, nurses and physicians who monitor > you...so it is well over $20,000 I imagine. THANK GOD FOR MEDICARE ! It is a 12 > > week course..once a week for about 4 hrs a needle is placed in each arm. Blood > is removed (Readers Digest version)plasma IS separated and it passes through a > column that has a protein A that attracts the elements (cytokines)in the blood of an RA > patient which causes the inflammation. The " cleansed " blood us > returned via the other arm. According to the Rheumatologist the success is about > > 50% and is not seen generally until the treatment is finished...12 weeks. > Hopefully I have explained it somewhat...as I am still learning myself. Any more > > info I can offer, please feel free to ask. > > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Is this " plasmaphoresis " ? I have heard of this....was curious about it, but does it require future treatments as well? - In , " easyspirit13@n... " <Easyspirit13@n...> wrote: > > > Hi > > I started the Prosorba column last Thursday at the Hershey Medical Center in PA. > > Medicare & AARP do pay for it...at least in some cases as they are paying for > mine. I know that each column runs about $1,000 for the column itself and that > does not include the Blood Bank staff, nurses and physicians who monitor > you...so it is well over $20,000 I imagine. THANK GOD FOR MEDICARE ! It is a 12 > > week course..once a week for about 4 hrs a needle is placed in each arm. Blood > is removed (Readers Digest version)plasma IS separated and it passes through a > column that has a protein A that attracts the elements (cytokines)in the blood of an RA > patient which causes the inflammation. The " cleansed " blood us > returned via the other arm. According to the Rheumatologist the success is about > > 50% and is not seen generally until the treatment is finished...12 weeks. > Hopefully I have explained it somewhat...as I am still learning myself. Any more > > info I can offer, please feel free to ask. > > Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Very interesting, Joanne. It will be interesting to see if it helps your RA. Please keep us posted. Sue On Saturday, August 21, 2004, at 11:18 AM, easyspirit13@... wrote: > > I started the Prosorba column last Thursday at the Hershey Medical > Center in PA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Very interesting, Joanne. It will be interesting to see if it helps your RA. Please keep us posted. Sue On Saturday, August 21, 2004, at 11:18 AM, easyspirit13@... wrote: > > I started the Prosorba column last Thursday at the Hershey Medical > Center in PA. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 21, 2004 Report Share Posted August 21, 2004 Joanne, I know very little about this treatment so I will be following closely to see how you are doing. May I ask what prompted you to try this? (don't answer if you would rather not) Do you have to fail other meds to qualify for this treatment. I hope with all my heart, that this is your magic bullet. Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 June, Thank you for your well wishes. I have just had my 2nd out of 12 treatments with the Prosorba Column. I felt that I had tried just about everything ever made for the treatment of RA and either they did not work or I had side effects...one I now have for life called Akathisia which is horrible. This is the first treatment that DOES NOT put something into my body. The column cleanses the blood of the cytokenes via purging my blood through a column and hopefully in 12 weeks I will feel like a new person. I will not lie..the first few days after the 4 hr. treatment I am feeling bad....flu like symptoms etc..but everyone is different. I want something to work and I am going for it. According to Hershey Medical Center, they have had a 50% success rate so I am hoping to be one of the success stories. I will keep you posted. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 June, Thank you for your well wishes. I have just had my 2nd out of 12 treatments with the Prosorba Column. I felt that I had tried just about everything ever made for the treatment of RA and either they did not work or I had side effects...one I now have for life called Akathisia which is horrible. This is the first treatment that DOES NOT put something into my body. The column cleanses the blood of the cytokenes via purging my blood through a column and hopefully in 12 weeks I will feel like a new person. I will not lie..the first few days after the 4 hr. treatment I am feeling bad....flu like symptoms etc..but everyone is different. I want something to work and I am going for it. According to Hershey Medical Center, they have had a 50% success rate so I am hoping to be one of the success stories. I will keep you posted. Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi No, no blood pressure drop..In fact, there is no obvious feeling that the apharesis is even going on. However after the treatment is another story. I develop flu like symptoms, sore joints, fever, malaise and achy muscles for about 2 days. And unfortunately for me and NOT A USUAL REACTION, I also develop akathisia which must be dealt with immediately with ativan and visteril. This terrible side effect is a result that I now have for life and is due to a dose of MTX and Phenergan...Now I am not able to take many meds because of this reaction. Why this is happening with the Prosorba Column which puts no medication in my system, I do not have a clue and neither do the doctos....Either way I am going to keep trying until completed even with the akathisia. I feel this is my last chance... Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi No, no blood pressure drop..In fact, there is no obvious feeling that the apharesis is even going on. However after the treatment is another story. I develop flu like symptoms, sore joints, fever, malaise and achy muscles for about 2 days. And unfortunately for me and NOT A USUAL REACTION, I also develop akathisia which must be dealt with immediately with ativan and visteril. This terrible side effect is a result that I now have for life and is due to a dose of MTX and Phenergan...Now I am not able to take many meds because of this reaction. Why this is happening with the Prosorba Column which puts no medication in my system, I do not have a clue and neither do the doctos....Either way I am going to keep trying until completed even with the akathisia. I feel this is my last chance... Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi No, no blood pressure drop..In fact, there is no obvious feeling that the apharesis is even going on. However after the treatment is another story. I develop flu like symptoms, sore joints, fever, malaise and achy muscles for about 2 days. And unfortunately for me and NOT A USUAL REACTION, I also develop akathisia which must be dealt with immediately with ativan and visteril. This terrible side effect is a result that I now have for life and is due to a dose of MTX and Phenergan...Now I am not able to take many meds because of this reaction. Why this is happening with the Prosorba Column which puts no medication in my system, I do not have a clue and neither do the doctos....Either way I am going to keep trying until completed even with the akathisia. I feel this is my last chance... Joanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 2004 Report Share Posted August 25, 2004 Hi No, no blood pressure drop..In fact, there is no obvious feeling that the apharesis is even going on. However after the treatment is another story. I develop flu like symptoms, sore joints, fever, malaise and achy muscles for about 2 days. And unfortunately for me and NOT A USUAL REACTION, I also develop akathisia which must be dealt with immediately with ativan and visteril. This terrible side effect is a result that I now have for life and is due to a dose of MTX and Phenergan...Now I am not able to take many meds because of this reaction. Why this is happening with the Prosorba Column which puts no medication in my system, I do not have a clue and neither do the doctos....Either way I am going to keep trying until completed even with the akathisia. I feel this is my last chance... Joanne Quote Link to comment Share on other sites More sharing options...
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