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Re: Update from founder-

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Hi ,

I hope you feel much better soon. Have you tried Arava and/or Plaquenil for your PA? Since all drugs have side effects,

be careful using these two, or whatever are your choices.

Sincerely,

Bill in DC

[ ] Update from founder- Dear friends, I am sorry I was in absentia for the last two and a half weeks. I had a huge flare a week prior to my scheduled treatment of the IV anti-TNF I am on. Then when I did have the treatment- even now- twelve days later- it is safe to say it has not worked! I am in a huge 10+ pain right now- from my neck to the sacroiliac and most of the joints. I am going to the rheumatologist at Columbia tomorrow to see what he suggests- the last time I was there my sed rate was 65- which was darn high for me already- As far as I know the Prosorba Column is all that is left on the ammo shelf and he mentioned that it was a nasty go- so I am not thinking he will even prescribe trying it anyways. It has been back to the daily MSContin and no driving, etc... which is horriffic when you have three active lively children aged 11, 12 and 14!! Thank god for other moms who will take my 12 year old to tennis,etc... We are living in a rural situation so I feel terrible that they are going to be so isolated again. I am also praying that my husband keeps up the good humor and patience...I can only imagine how trying it is for him too. Has anyone read of any breakthroughs lately for the PA treatment? You all know I have tried everything medically available and that was after going all natural at first . I think it is great how well the list putters along daily with everyone supporting each other. Let's keep up helping each other- we are all in this together.

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Hi ,

Unfortunately I don't have any answers for you, but I'm sorry you're

having such a bad time and will keep you in my prayers. I am blessed

with a patient husband as well, who is also very caring, attentive,

and undemanding...don't know how I would survive without him

sometimes.

Wishing you better days,

:)

> Dear friends,

>

> I am sorry I was in absentia for the last two and a half weeks. I

had a huge

> flare a week prior to my scheduled treatment of the IV anti-TNF I

am on.

> Then when I did have the treatment- even now- twelve days later- it

is safe

> to say it has not worked! I am in a huge 10+ pain right now- from

my neck to

> the sacroiliac and most of the joints. I am going to the

rheumatologist at

> Columbia tomorrow to see what he suggests- the last time I was

there my sed

> rate was 65- which was darn high for me already- As far as I know

the

> Prosorba Column is all that is left on the ammo shelf and he

mentioned that

> it was a nasty go- so I am not thinking he will even prescribe

trying it

> anyways. It has been back to the daily MSContin and no driving,

etc... which

> is horriffic when you have three active lively children aged 11, 12

and 14!!

> Thank god for other moms who will take my 12 year old to

tennis,etc... We are

> living in a rural situation so I feel terrible that they are going

to be so

> isolated again. I am also praying that my husband keeps up the good

humor and

> patience...I can only imagine how trying it is for him too. Has

anyone read

> of any breakthroughs lately for the PA treatment? You all know I

have tried

> everything medically available and that was after going all natural

at first .

>

> I think it is great how well the list putters along daily with

everyone

> supporting each other. Let's keep up helping each other- we are

all in this

> together.

>

>

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In a message dated 24/04/01 20:21:19 GMT Daylight Time, CTNATIVE@... writes:

I think it is great how well the list putters along daily with everyone supporting each other. Let's keep up helping each other- we are all in this together.

Hi ,

Nice to hear from you, and our sympathies go out to you! At least we can all relate to you.

I had a very bad flare-up just before joining your group, (I wasn't a pretty sight :-) )...

I am just thankful that the flare-ups 'come down!!!'...

Take care.

Mike (from the UK)

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Hi ,

I'm sorry to hear that you've been feeling so badly.

I was so hoping the Remicade was going to help.

Don't know what the new med is. Take care. We

are here for you.

Blessings,

Pat

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