Re: Re: I HAVE JUST COMPLETED 3 MONTHS OF THE PROSORBA TREATMENT !!!!

[Guest guest]

Joann,

Thanks for a story with a happier ending than most I have been reading. I was

diagnosed with RA this August. SO, I am really new to this. Still can't

believe that I have this disease. Keep hoping for something else. I am taking

20 mg of Prednisone and 400 mg of Plaquenil a day. Can't seem to get off of the

Prednisone. It renders me incapable of even getting out of bed. Rheumy tried

to reduce the dose several times. This last time, I developed what felt like a

lump in my throat. So, I'm back up to 20mg without relief. I can't get in to

see a specialist until December 3rd and I've been struggling with this for 4

weeks now. I lose my voice and often can only manage a whisper, it is more

difficult to swallow and I am out of breath when I do anything a little bit

strenuous. Interestingly enough, I can move now; but I am constantly aware of

this undercurrent of tremors just below my skin. The tremors used to be

visible. It sounds like you had a very severe case of RA. Did

you ever have the tremors or the problems with your throat?

Beth

snowdrift52003 <snowdrift52003@...> wrote:

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

[Guest guest]

Joann,

Thanks for a story with a happier ending than most I have been reading. I was

diagnosed with RA this August. SO, I am really new to this. Still can't

believe that I have this disease. Keep hoping for something else. I am taking

20 mg of Prednisone and 400 mg of Plaquenil a day. Can't seem to get off of the

Prednisone. It renders me incapable of even getting out of bed. Rheumy tried

to reduce the dose several times. This last time, I developed what felt like a

lump in my throat. So, I'm back up to 20mg without relief. I can't get in to

see a specialist until December 3rd and I've been struggling with this for 4

weeks now. I lose my voice and often can only manage a whisper, it is more

difficult to swallow and I am out of breath when I do anything a little bit

strenuous. Interestingly enough, I can move now; but I am constantly aware of

this undercurrent of tremors just below my skin. The tremors used to be

visible. It sounds like you had a very severe case of RA. Did

you ever have the tremors or the problems with your throat?

Beth

snowdrift52003 <snowdrift52003@...> wrote:

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

[Guest guest]

Joanne, good for you! i am glad to hear things are looking up...

rae

[ ] Re: I HAVE JUST COMPLETED 3 MONTHS OF THE PROSORBA

TREATMENT !!!!

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, good for you! i am glad to hear things are looking up...

rae

[ ] Re: I HAVE JUST COMPLETED 3 MONTHS OF THE PROSORBA

TREATMENT !!!!

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]

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]

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

>

>

>