RE: Is this Group Still Alive? My two cents

[Guest guest]

Dear Rouen2: One of the problems with doctors unfamiliar with this AP is

the desire to " get there " with immediate results rather than take it " slow and

easy. " My journey started with Doctor Sinnott years ago with 100 mg. twice

daily MWF and has never changed except for small periods of time when I might

have needed to switch for a small period of time for some reason. Dosage has

always remained the same, however. My husband and I elected to pay out of

pocket and it was a financial challenge to keep me in treatment those years

but now that my tests are negative, the price does not seem so steep. One of

my sons was complaining that we had not done enough financial planning for

later years and I laughed because I had never thought I would have later years

so that planning seemed a bit redundant. Now, I will be able to plan! Best

of luck to you,

[Guest guest]

Thank you for writing about the group. As a new subscriber, i noticed that they

are few people waiting to encourage us babes....

I am fighting hard for this AP, want to take it as Dr Brown's AP, but my

rheumy wants me to take 200mg everyday, and the generic at that. I am going to

pay out of pocket for the real thing and take it 3 times a week, at only 100 mg.

As a former nurse, i know hoe hard it is to fight for patient's right. Please

keep encouraging us, we need it, I've just started the fight, after 12 yrs of

RA, going down, down.

Sltfain@... wrote:

This is definitely a trend with this group - that rather than posting to

all, people are posting back privately. It is a terrific loss to me as I had

written in and asked to see all the feedback received from the poster whose

tests were now negative and she wanted feedback on how to continue.

My tests for SD are now all negative. I am at a crossroads on whether to

continue the Minocin, discontinue the Minocin, do occasional clindymycin iv's

or just what. This was a real bummer that no feedback was posted to the

group as a whole.

This list has been my lifeline in the past and it remains valuable to me but

terribly dead and truthfully, because of that, of much less use to those

beginning the journey who might have come here to just read.

I hope this note will spur everyone to set that reply to ALL instead of the

individual sender

[Guest guest]

Good idea to pay for the brand. Having taken both the generic and the brand

I can tell you that I have had a difference in my lab work when taking

generic not to mention feeling a few more aches and pains than usual.

Regards,

Dee

Re: rheumatic Is this Group Still Alive? My two cents

Thank you for writing about the group. As a new subscriber, i noticed that

they are few people waiting to encourage us babes....

I am fighting hard for this AP, want to take it as Dr Brown's AP, but my

rheumy wants me to take 200mg everyday, and the generic at that. I am going

to pay out of pocket for the real thing and take it 3 times a week, at only

100 mg. As a former nurse, i know hoe hard it is to fight for patient's

right. Please keep encouraging us, we need it, I've just started the fight,

after 12 yrs of RA, going down, down.

Sltfain@... wrote:

This is definitely a trend with this group - that rather than posting to

all, people are posting back privately. It is a terrific loss to me as I had

written in and asked to see all the feedback received from the poster whose

tests were now negative and she wanted feedback on how to continue.

My tests for SD are now all negative. I am at a crossroads on whether to

continue the Minocin, discontinue the Minocin, do occasional clindymycin

iv's

or just what. This was a real bummer that no feedback was posted to the

group as a whole.

This list has been my lifeline in the past and it remains valuable to me but

terribly dead and truthfully, because of that, of much less use to those

beginning the journey who might have come here to just read.

I hope this note will spur everyone to set that reply to ALL instead of the

individual sender

[Guest guest]

My first Rx was a generic and it did work. The refill (and a different

manufacturer) did not. So I went on the Brand. When I ran out of the

brand, I tried to rest of the generic (to be fair and make sure it wasn't

all in my head) and after a month I was in pain. So I got the Brand again.

One pill of the Brand, the pain in my foot was gone! ONE PILL!

My doctor prescribes 100 mg Minocin twice a day; I take one. If I've had

herx's, I haven't noticed...maybe my whole life has been a herx. LOL, El

Re: rheumatic Is this Group Still Alive? My two cents

Thank you for writing about the group. As a new subscriber, i noticed that

they are few people waiting to encourage us babes....

I am fighting hard for this AP, want to take it as Dr Brown's AP, but my

rheumy wants me to take 200mg everyday, and the generic at that. I am going

to pay out of pocket for the real thing and take it 3 times a week, at only

100 mg. As a former nurse, i know hoe hard it is to fight for patient's

right. Please keep encouraging us, we need it, I've just started the fight,

after 12 yrs of RA, going down, down.

Sltfain@... wrote:

This is definitely a trend with this group - that rather than posting to

all, people are posting back privately. It is a terrific loss to me as I had

written in and asked to see all the feedback received from the poster whose

tests were now negative and she wanted feedback on how to continue.

My tests for SD are now all negative. I am at a crossroads on whether to

continue the Minocin, discontinue the Minocin, do occasional clindymycin

iv's

or just what. This was a real bummer that no feedback was posted to the

group as a whole.

This list has been my lifeline in the past and it remains valuable to me but

terribly dead and truthfully, because of that, of much less use to those

beginning the journey who might have come here to just read.

I hope this note will spur everyone to set that reply to ALL instead of the

individual sender

[Guest guest]

Thanks for writing. Did you feel tired at first? i've been on the AP for 1

month, and I'm dragging.........I can feel my toes, and my ankles are not as

swollen, so I;m happy about that patience, patience, after 12 yrs, it's

rough....

ehgooding <ehgooding@...> wrote: My first Rx was a generic and it

did work. The refill (and a different

manufacturer) did not. So I went on the Brand. When I ran out of the

brand, I tried to rest of the generic (to be fair and make sure it wasn't

all in my head) and after a month I was in pain. So I got the Brand again.

One pill of the Brand, the pain in my foot was gone! ONE PILL!

My doctor prescribes 100 mg Minocin twice a day; I take one. If I've had

herx's, I haven't noticed...maybe my whole life has been a herx. LOL, El

Re: rheumatic Is this Group Still Alive? My two cents

Thank you for writing about the group. As a new subscriber, i noticed that

they are few people waiting to encourage us babes....

I am fighting hard for this AP, want to take it as Dr Brown's AP, but my

rheumy wants me to take 200mg everyday, and the generic at that. I am going

to pay out of pocket for the real thing and take it 3 times a week, at only

100 mg. As a former nurse, i know hoe hard it is to fight for patient's

right. Please keep encouraging us, we need it, I've just started the fight,

after 12 yrs of RA, going down, down.

Sltfain@... wrote:

This is definitely a trend with this group - that rather than posting to

all, people are posting back privately. It is a terrific loss to me as I had

written in and asked to see all the feedback received from the poster whose

tests were now negative and she wanted feedback on how to continue.

My tests for SD are now all negative. I am at a crossroads on whether to

continue the Minocin, discontinue the Minocin, do occasional clindymycin

iv's

or just what. This was a real bummer that no feedback was posted to the

group as a whole.

This list has been my lifeline in the past and it remains valuable to me but

terribly dead and truthfully, because of that, of much less use to those

beginning the journey who might have come here to just read.

I hope this note will spur everyone to set that reply to ALL instead of the

individual sender

[Guest guest]

this groups has been an invaluable source of information for the past 2-3

years. Now my 30 yr old son has RA in his feet. So I'm working with him to

work with his rheumie to start AP therapy.

Sandy

Beaumont, CA

MCTD, SD, PF, CREST, GERD

Re: rheumatic Is this Group Still Alive? My two cents

Thank you for writing about the group. As a new subscriber, i noticed that

they are few people waiting to encourage us babes....

I am fighting hard for this AP, want to take it as Dr Brown's AP, but my

rheumy wants me to take 200mg everyday, and the generic at that. I am going

to pay out of pocket for the real thing and take it 3 times a week, at only

100 mg. As a former nurse, i know hoe hard it is to fight for patient's

right. Please keep encouraging us, we need it, I've just started the fight,

after 12 yrs of RA, going down, down.

Sltfain@...<mailto:Sltfain@...> wrote:

This is definitely a trend with this group - that rather than posting to

all, people are posting back privately. It is a terrific loss to me as I had

written in and asked to see all the feedback received from the poster whose

tests were now negative and she wanted feedback on how to continue.

My tests for SD are now all negative. I am at a crossroads on whether to

continue the Minocin, discontinue the Minocin, do occasional clindymycin

iv's

or just what. This was a real bummer that no feedback was posted to the

group as a whole.

This list has been my lifeline in the past and it remains valuable to me but

terribly dead and truthfully, because of that, of much less use to those

beginning the journey who might have come here to just read.

I hope this note will spur everyone to set that reply to ALL instead of the

individual sender

[Guest guest]

Sandy, I am in the same boat as you. I, too, have a son who has been

diagnosed with rheumatoid arthritis and his hands are already beginning to curl

and

freeze. It breaks my heart that he has watched me go from being so ill with

SD to living a really busy, full life with better yet, NO PAIN. I watch him

walk from behind and he is beginning to move like an old man instead of the

young one he is. I watch him struggle with pain and one sinus infection

after another. I cannot force him to do the AP, only pray that he will finally

agree to start. Sitting on the sidelines, knowing the AP usually works, sure

makes it hard when loved ones or friends turn to other medical deities, like

someone else said here.

[Guest guest]

Hi, I was just diagnosed with RA and need to find a

Dr. in my area...Boston...to treat me with

antibiotics. Any idea how I would find one?

Thanks..Maureen

--- Sltfain@... wrote:

> Sandy, I am in the same boat as you. I, too, have a

> son who has been

> diagnosed with rheumatoid arthritis and his hands

> are already beginning to curl and

> freeze. It breaks my heart that he has watched me

> go from being so ill with

> SD to living a really busy, full life with better

> yet, NO PAIN. I watch him

> walk from behind and he is beginning to move like an

> old man instead of the

> young one he is. I watch him struggle with pain and

> one sinus infection

> after another. I cannot force him to do the AP,

> only pray that he will finally

> agree to start. Sitting on the sidelines, knowing

> the AP usually works, sure

> makes it hard when loved ones or friends turn to

> other medical deities, like

> someone else said here.

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

....I do not have SD. I do have RA with all blood tests now normal.

I would stay on a maintenance dose of three days a week for insurance against

a repeat of the disease. Some years ago I began missing doses of my

maintenance meds. After awhile I felt the stirrings of the old monster trying

to

awaken. You better believe I went straight back on the meds and continue to

this day. No more monsters for me please!!!! Martha

[Guest guest]

I have been on antibiotics since 1997 for MCTD (a type of SD) I

would not go off, although my tests have been negative for years..

there used to be people who said they went off, and their remission

reverted,,,and they never went back to remission....so I never

terminated my antibiotics..

linda

>

>

> This is definitely a trend with this group - that rather than

posting to

> all, people are posting back privately. It is a terrific loss to

me as I had

> written in and asked to see all the feedback received from the

poster whose

> tests were now negative and she wanted feedback on how to continue.

>

> My tests for SD are now all negative. I am at a crossroads on

whether to

> continue the Minocin, discontinue the Minocin, do occasional

clindymycin iv's

> or just what. This was a real bummer that no feedback was posted

to the

> group as a whole.

>

> This list has been my lifeline in the past and it remains valuable

to me but

> terribly dead and truthfully, because of that, of much less use to

those

> beginning the journey who might have come here to just read.

>

> I hope this note will spur everyone to set that reply to ALL

instead of the

> individual sender

>

>

>

>