Re: plasmaphereis

[Guest guest]

Susie, my doctor in Oregon mentioned it to me once along with the

infusion thing (Remicade). They sounded way off to me but did end up

trying the Remicade, I moved before we got any farther. Here in

Washington the doctor tried me on Kineret, but after that failed we

are just sticking with the Methotrexate infections for now. He has

mentioned the plasmaphereis.

That didn't help much, but I have heard of it.

in WA

[Guest guest]

Susie, what is your sister's diagnosis?

The Prosorba column in RA works in part with a plasmapheresis machine:

http://www.hopkins-arthritis.som.jhmi.edu/news-archive/1999/trialprosorba.html

I know Stacey was considering doing it. I don't know of anyone who actually

tried it yet.

[ ] plasmaphereis

> Has anyone had a doctor suggest having " plasmaphereis " ? ( which is a

> week long procedure of removing your blood every day and " washing it "

> under lights).

> My sisters doctor has suggested it for her. She is a RN, so she was

> throwing a lot of tech stuff at me about it! But I told her I would ask

> this group if any of ya'll had had it suggested you try it, or if any of

> you HAVE tried it.

> *Plasmaphereis: blood is drawn through a needle in the arm, similar to

> donating blood. The blood goes through a machine that separates out the

> white cells (immune system cells), and the rest of the blood is returned

> through a needle in the other arm.*

> Thanks

> Susie

[Guest guest]

Sorry to reply so late, but life has been crazy. Yes, I was on the list for

prosorba column, but the local blood bank is short handed. That means there

is no tech to do the prosorba column. I would have to travel to Pittsburgh

(1 1/2) hours once a week for a 4 hour treatment for 12 weeks. Oh and

someone would have to come with me, because they won't let you drive home.

Then there is the babysitting problem....... So, as of yet, I haven't had

the pleasure.

Sorry I couldn't help more,

Stacey in PA

[Guest guest]

Hi a,

From what my rheumy says, the blood bank is the only place that does this

procedure right now. I do know that some of the dialysis centers are looking

into setting up for it. It basically uses the same machines with a different

filter. The problem is that it is not a heavily prescribed treatment and is

considered pretty much a last resort measure. Bottom line: its not cost

effective. Oh well, I have to get labs and a TB test tomorrow for the start

of Remicade. As soon as he gets the results, he will schedule the first

infusion. I'm hoping for next week. Can hardly wait for some relief. Just

in time for the end of summer. That's ok. Fall is my favorite time anyway.

We always take a ride up into the mountains and do the festivals and road

side stands. You haven't lived until you have tried homemade pumpkin butter

or cherry apple cider. There should be a chili cook-off at the small winery

up there in Sept. That's always a hoot!!!!! They give you free samples of

the wine. Need I say more. We know now to keep an eye on mom when we get

there. Its a lot of fun and they have shuttles so that you don't have to

walk very far. Sights and smells. If you are ever in the area of southwest

PA, let me know. I'll be happy to show you around.

Love ya

Stacey in PA

[Guest guest]

I¹m sorry Stacey. I know you are disappointed. This could be a temporary

problem at the blood bank. Is the blood bank the only place locally that

can administer it?

I hope you can find another alternative.

a

> Sorry to reply so late, but life has been crazy. Yes, I was on the list for

> prosorba column, but the local blood bank is short handed. That means there

> is no tech to do the prosorba column. I would have to travel to Pittsburgh

> (1 1/2) hours once a week for a 4 hour treatment for 12 weeks. Oh and

> someone would have to come with me, because they won't let you drive home.

> Then there is the babysitting problem....... So, as of yet, I haven't had

> the pleasure.

> Sorry I couldn't help more,

> Stacey in PA

>

>

[Guest guest]

Stacey,

Hopefully the Remicade will help you as it has so many others. It stinks

that cost effectiveness is a higher priority than patient need.

I envy you living in such a beautiful area, especially in the fall. The

Lancaster area is one of my favorite places to go, especially in the fall.

We usually go camping in that area at least once a year. I know you¹re

probably about 2 hours from Lancaster judging by your saying Pittsburg is 1

1/2 hours. If we ever get in your area, I¹ll let you know. If you¹re ever

in the Atlantic City area, you let me know too!

Now you¹ve got me drooling over pumpkin butter!

Hugs,

a

> Hi a,

> From what my rheumy says, the blood bank is the only place that does this

> procedure right now. I do know that some of the dialysis centers are looking

> into setting up for it. It basically uses the same machines with a different

> filter. The problem is that it is not a heavily prescribed treatment and is

> considered pretty much a last resort measure. Bottom line: its not cost

> effective. Oh well, I have to get labs and a TB test tomorrow for the start

> of Remicade. As soon as he gets the results, he will schedule the first

> infusion. I'm hoping for next week. Can hardly wait for some relief. Just

> in time for the end of summer. That's ok. Fall is my favorite time anyway.

> We always take a ride up into the mountains and do the festivals and road

> side stands. You haven't lived until you have tried homemade pumpkin butter

> or cherry apple cider. There should be a chili cook-off at the small winery

> up there in Sept. That's always a hoot!!!!! They give you free samples of

> the wine. Need I say more. We know now to keep an eye on mom when we get

> there. Its a lot of fun and they have shuttles so that you don't have to

> walk very far. Sights and smells. If you are ever in the area of southwest

> PA, let me know. I'll be happy to show you around.

> Love ya

> Stacey in PA

>

>