I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA TREATMENT !!!!

[Guest guest]

May i ask what is prosorba, i could not find any info on it in kaisers web

site.. or i may be looking in the wrong place.. is it a drug?

rae

Re: [ ] Re: I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

TREATMENT !!!!

JoAnn,

I am thrilled to hear that you are doing will with the Prosorba. I hope

others that aren¹t responding to meds will consider Prosorba. I is not

widely prescribed. Have fun with the volunteering. I started voluneering

right before we left NJ and I really liked it. There is not a chapter here

in Florida, but one is being started, so I¹ll be able to volunteer again.

I very proud of you and hope you have continued success.

a

>

> 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

>

>

>

[Guest guest]

May i ask what is prosorba, i could not find any info on it in kaisers web

site.. or i may be looking in the wrong place.. is it a drug?

rae

Re: [ ] Re: I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

TREATMENT !!!!

JoAnn,

I am thrilled to hear that you are doing will with the Prosorba. I hope

others that aren¹t responding to meds will consider Prosorba. I is not

widely prescribed. Have fun with the volunteering. I started voluneering

right before we left NJ and I really liked it. There is not a chapter here

in Florida, but one is being started, so I¹ll be able to volunteer again.

I very proud of you and hope you have continued success.

a

>

> 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

>

>

>

[Guest guest]

Joanne, you are an inspiration the way you have taken back your life.

I have been rushing a lot lately back and forth to doctor appts so have not been

able to keep up with messages. I now have an appt Jan 6 for my knee with an

ortho that only does knees. I saw the ankle doctor today but there is a hitch he

discovered today that is going to slow down any operation on my ankle. He is

talking about an ankle replacement but first I have to get a Vascular Duflex

Scan done on Dec. 1 because he couldn't find any pulse anywhere. Of course, I

still am waiting to see what is going on with my spine after the catscan

sometime in Dec. It is costing me a fortune in parking fees. Today was one of

the cheaper ones, $15.00. Last week, one day was $21 and the next time $18.

Because I can't walk, there is no other option.

Hope to get caught up this week with what everyone on the list is doing.

Hugs

June

[Guest guest]

It sometimes makes me feel better that others are really worse than me.

There are certainly times that I wonder, especially on my bad days. At my

hospital, there is valet parking, and it's FREE! And then I do the bad thing

that makes the problems outweigh the good. I was leaving the hospital but

didn't have room to load my scooter in the side door of Betty's van, so I

moved it into the driving lane just enough to load it. I left the engine

running and went to the passenger side to load up, but the door was locked,

so back around to the drivers door to hit the 'unlock' button. I pressed the

button, closed the door and went around to the other side again. The door

was still locked! I hit the lock side instead of unlock, and the key is in

the ignition and the engine running! Locked myself out and looking for a

window to break, but the security folks came to the rescue. They have a set

of slim-jim's just for that purpose. I'm sitting there on the scooter,

redder than the paint job (it's candy apple red). Dumb, dumb, dumb.... Thank

goodness they were successful and I was on my way. Maybe I won't do that

again until the next time. :}

I really hate that you have to pay so much. It would be impossible for me

because of existing on SSD only. One thing you may be able to do is to get a

power chair or 4 wheel scooter. I waited 4 years, not able to go anywhere,

then ran Betty ragged by going to the mall finally.

Dennis

[ ] I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

TREATMENT !!!!

>

> Joanne, you are an inspiration the way you have taken back your life.

>

> I have been rushing a lot lately back and forth to doctor appts so have

> not been able to keep up with messages. I now have an appt Jan 6 for my

> knee with an ortho that only does knees. I saw the ankle doctor today but

> there is a hitch he discovered today that is going to slow down any

> operation on my ankle. He is talking about an ankle replacement but first

> I have to get a Vascular Duflex Scan done on Dec. 1 because he couldn't

> find any pulse anywhere. Of course, I still am waiting to see what is

> going on with my spine after the catscan sometime in Dec. It is costing me

> a fortune in parking fees. Today was one of the cheaper ones, $15.00. Last

> week, one day was $21 and the next time $18. Because I can't walk, there

> is no other option.

>

> Hope to get caught up this week with what everyone on the list is doing.

>

> Hugs

> June

>

[Guest guest]

It sometimes makes me feel better that others are really worse than me.

There are certainly times that I wonder, especially on my bad days. At my

hospital, there is valet parking, and it's FREE! And then I do the bad thing

that makes the problems outweigh the good. I was leaving the hospital but

didn't have room to load my scooter in the side door of Betty's van, so I

moved it into the driving lane just enough to load it. I left the engine

running and went to the passenger side to load up, but the door was locked,

so back around to the drivers door to hit the 'unlock' button. I pressed the

button, closed the door and went around to the other side again. The door

was still locked! I hit the lock side instead of unlock, and the key is in

the ignition and the engine running! Locked myself out and looking for a

window to break, but the security folks came to the rescue. They have a set

of slim-jim's just for that purpose. I'm sitting there on the scooter,

redder than the paint job (it's candy apple red). Dumb, dumb, dumb.... Thank

goodness they were successful and I was on my way. Maybe I won't do that

again until the next time. :}

I really hate that you have to pay so much. It would be impossible for me

because of existing on SSD only. One thing you may be able to do is to get a

power chair or 4 wheel scooter. I waited 4 years, not able to go anywhere,

then ran Betty ragged by going to the mall finally.

Dennis

[ ] I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

TREATMENT !!!!

>

> Joanne, you are an inspiration the way you have taken back your life.

>

> I have been rushing a lot lately back and forth to doctor appts so have

> not been able to keep up with messages. I now have an appt Jan 6 for my

> knee with an ortho that only does knees. I saw the ankle doctor today but

> there is a hitch he discovered today that is going to slow down any

> operation on my ankle. He is talking about an ankle replacement but first

> I have to get a Vascular Duflex Scan done on Dec. 1 because he couldn't

> find any pulse anywhere. Of course, I still am waiting to see what is

> going on with my spine after the catscan sometime in Dec. It is costing me

> a fortune in parking fees. Today was one of the cheaper ones, $15.00. Last

> week, one day was $21 and the next time $18. Because I can't walk, there

> is no other option.

>

> Hope to get caught up this week with what everyone on the list is doing.

>

> Hugs

> June

>

[Guest guest]

Dennis,

When I see someone worse off than me, I also feel blessed that I¹m not as

bad as it could be. Our hospital here has a huge parking lot, valet parking

is 10.00 but they have a golf cart that goes through the parking lot picking

up people that can¹t walk. It¹s a pretty good system and is free.

I¹ve locked my keys in and know how embarassing it is. The last time we did

it was when we went to pick out our Christmas tree. We loaded the tree on

the back of the pickup and went to get in. We had to wind up calling a

locksmith. Those magnetic hide a key sound better every day.

a

>

> It sometimes makes me feel better that others are really worse than me.

> There are certainly times that I wonder, especially on my bad days. At my

> hospital, there is valet parking, and it's FREE! And then I do the bad thing

> that makes the problems outweigh the good. I was leaving the hospital but

> didn't have room to load my scooter in the side door of Betty's van, so I

> moved it into the driving lane just enough to load it. I left the engine

> running and went to the passenger side to load up, but the door was locked,

> so back around to the drivers door to hit the 'unlock' button. I pressed the

> button, closed the door and went around to the other side again. The door

> was still locked! I hit the lock side instead of unlock, and the key is in

> the ignition and the engine running! Locked myself out and looking for a

> window to break, but the security folks came to the rescue. They have a set

> of slim-jim's just for that purpose. I'm sitting there on the scooter,

> redder than the paint job (it's candy apple red). Dumb, dumb, dumb.... Thank

> goodness they were successful and I was on my way. Maybe I won't do that

> again until the next time. :}

>

> I really hate that you have to pay so much. It would be impossible for me

> because of existing on SSD only. One thing you may be able to do is to get a

> power chair or 4 wheel scooter. I waited 4 years, not able to go anywhere,

> then ran Betty ragged by going to the mall finally.

>

> Dennis

>

> [ ] I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

> TREATMENT !!!!

>

>

>> >

>> > Joanne, you are an inspiration the way you have taken back your life.

>> >

>> > I have been rushing a lot lately back and forth to doctor appts so have

>> > not been able to keep up with messages. I now have an appt Jan 6 for my

>> > knee with an ortho that only does knees. I saw the ankle doctor today but

>> > there is a hitch he discovered today that is going to slow down any

>> > operation on my ankle. He is talking about an ankle replacement but first

>> > I have to get a Vascular Duflex Scan done on Dec. 1 because he couldn't

>> > find any pulse anywhere. Of course, I still am waiting to see what is

>> > going on with my spine after the catscan sometime in Dec. It is costing me

>> > a fortune in parking fees. Today was one of the cheaper ones, $15.00. Last

>> > week, one day was $21 and the next time $18. Because I can't walk, there

>> > is no other option.

>> >

>> > Hope to get caught up this week with what everyone on the list is doing.

>> >

>> > Hugs

>> > June

>> >

>

>

>

>

>

[Guest guest]

Dennis,

When I see someone worse off than me, I also feel blessed that I¹m not as

bad as it could be. Our hospital here has a huge parking lot, valet parking

is 10.00 but they have a golf cart that goes through the parking lot picking

up people that can¹t walk. It¹s a pretty good system and is free.

I¹ve locked my keys in and know how embarassing it is. The last time we did

it was when we went to pick out our Christmas tree. We loaded the tree on

the back of the pickup and went to get in. We had to wind up calling a

locksmith. Those magnetic hide a key sound better every day.

a

>

> It sometimes makes me feel better that others are really worse than me.

> There are certainly times that I wonder, especially on my bad days. At my

> hospital, there is valet parking, and it's FREE! And then I do the bad thing

> that makes the problems outweigh the good. I was leaving the hospital but

> didn't have room to load my scooter in the side door of Betty's van, so I

> moved it into the driving lane just enough to load it. I left the engine

> running and went to the passenger side to load up, but the door was locked,

> so back around to the drivers door to hit the 'unlock' button. I pressed the

> button, closed the door and went around to the other side again. The door

> was still locked! I hit the lock side instead of unlock, and the key is in

> the ignition and the engine running! Locked myself out and looking for a

> window to break, but the security folks came to the rescue. They have a set

> of slim-jim's just for that purpose. I'm sitting there on the scooter,

> redder than the paint job (it's candy apple red). Dumb, dumb, dumb.... Thank

> goodness they were successful and I was on my way. Maybe I won't do that

> again until the next time. :}

>

> I really hate that you have to pay so much. It would be impossible for me

> because of existing on SSD only. One thing you may be able to do is to get a

> power chair or 4 wheel scooter. I waited 4 years, not able to go anywhere,

> then ran Betty ragged by going to the mall finally.

>

> Dennis

>

> [ ] I HAVE JUST COMPLETED 3 MONTHS OF THEPROSORBA

> TREATMENT !!!!

>

>

>> >

>> > Joanne, you are an inspiration the way you have taken back your life.

>> >

>> > I have been rushing a lot lately back and forth to doctor appts so have

>> > not been able to keep up with messages. I now have an appt Jan 6 for my

>> > knee with an ortho that only does knees. I saw the ankle doctor today but

>> > there is a hitch he discovered today that is going to slow down any

>> > operation on my ankle. He is talking about an ankle replacement but first

>> > I have to get a Vascular Duflex Scan done on Dec. 1 because he couldn't

>> > find any pulse anywhere. Of course, I still am waiting to see what is

>> > going on with my spine after the catscan sometime in Dec. It is costing me

>> > a fortune in parking fees. Today was one of the cheaper ones, $15.00. Last

>> > week, one day was $21 and the next time $18. Because I can't walk, there

>> > is no other option.

>> >

>> > Hope to get caught up this week with what everyone on the list is doing.

>> >

>> > Hugs

>> > June

>> >

>

>

>

>

>