Re: MTX

[Guest guest]

HE IS NOT OFF INFACT HE TAKES IT BY SHOT AND KINERET

**************Start the year off right. Easy ways to stay in shape.

http://body.aol.com/fitness/winter-exercise?NCID=aolcmp00300000002489

[Guest guest]

I take MTX by tablets and Kineret by shot.

Re: MTX

HE IS NOT OFF INFACT HE TAKES IT BY SHOT AND KINERET

************ **Start the year off right. Easy ways to stay in shape.

http://body. aol.com/fitness/ winter-exercise? NCID=aolcmp00300 000002489

[Guest guest]

Hi Jody and Mark,

How are you both this evening?

I have been battling 'the dragon' since  September of 2007.

I started out with the rash and went to the. e.r. (I work in a hospital so I

thought I would be able to save on a Dr. visit to my PCP and not have to wait 2

weeks for an appt). the e.r. Dr. there said I was having an allergic reaction to

something....and gave me prednisone 20 mg. to be taken every day for a

week....well,in the mean time, my husband and I went away for the

weekend..Galena, Illinois.

But I was sooooooo tired by the time we got to Galena,  (3 hour drive?) and in

soooooooo much pain I went straight to sleep after taking 4 Advils. 

The rash didnt clear up, so I went to my PCP who put me on 10 mg prednisone (I

thought if 20 didnt help, why would 10!) but I also was given 120 mg allegra

Then my hands had swollen up 3x their size and I was having fevers ( 103.8) at

night and fine in the morning! So I went back to the Dr. where I received a shot

of prednisone (125mg?) and looked at by other interns but I told them not to

touch my hands because i could not stand the pain!!!!!

Well, that didnt help, so i called my PCP the next day and he said he wanted me

in the hospital that day.  I waited for my husband to come home from work ( 5

hours-who said I should have called him from work and he would have taken me

right away)...and I waited in my hospitals e.r. for 4 hours in sooooo much pain

and weakness...only to be told I wasn't going to be admitted because they were

on bypass!!!!!! Why they didn't tell me this 4 hours ago I don't know....so I

left and told them they better not bill me for sitting in their waiting room!!

then the next day my PCP called me and said to go to the nearest hospital (even

though my insurance would not be there)...so I went to the nearest hospital and

was admitted for a week!..the dr.'s there FINALLY said I had a rare disease

called Stills...and I left with more pills..prednisone 80mg a day, and tylenol

#3 every 4-6 hours for the pain...I went to one Rheumatologist, but my insurance

would not pay for an out of network Dr....and I am sure I could not afford him

without insurance!! So i am going to another Rheumy-whom I like alot too...she

put me on the methotrxate and is lowering the prednisone slowly....I am now down

to 15mg of prednisone a day and on Sundays I take 15mg. of

Methotrexate....amongst other pills...but that is another book...and that is

where i am now...I have not been back to work and I will not go back until I

feel much better...I will not wear myself out again...I worked a lot of extra

hours and where did it get me??? I am very tired and I get weak alot but that is

when i rest...I get spurts of energy and then get sooooooooo tired...It will

even out and I feel like I am getting better.. slowly..

Did your dr. also prescribe Folic Acid for you?  If you are on the methotrexate

it helps so you dont get anemic....

Any questions or just feel like talking...ANYTIME email me: 

tototoo42@... 

or ANYONE in the group...they are all here for you and all of us... 

tomorrow is my birthday so I have to get rest so i have energy for all the

presents my family is going to get for me!!!!!(yeah right!)  and for all the

partying i will be doing (lol )

Diane 42

p.s. Just remember that your family needs YOU!  I have not been at work since

Sept. and like i said i dont plan on going back till I feel better..a lot

better...it will be hard with the $$$$ but we will survive...if I go back too

soon, maybe I won't!

, what happened when you went off MTX? Mark really wants to get off of it

and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Jody/Mark,

Awesome!!!!

Mike

Jody Klein wrote:

, what happened when you went off MTX? Mark really wants to get

off of it and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Happy Birthday Diane42

Mike in Winnipeg

tototoo42@... wrote:

Hi Jody and Mark,

How are you both this evening?

I have been battling 'the dragon' since September of 2007.

I started out with the rash and went to the. e.r. (I work in a hospital so I

thought I would be able to save on a Dr. visit to my PCP and not have to wait 2

weeks for an appt). the e.r. Dr. there said I was having an allergic reaction to

something....and gave me prednisone 20 mg. to be taken every day for a

week....well,in the mean time, my husband and I went away for the

weekend..Galena, Illinois.

But I was sooooooo tired by the time we got to Galena, (3 hour drive?) and in

soooooooo much pain I went straight to sleep after taking 4 Advils.

The rash didnt clear up, so I went to my PCP who put me on 10 mg prednisone (I

thought if 20 didnt help, why would 10!) but I also was given 120 mg allegra

Then my hands had swollen up 3x their size and I was having fevers ( 103.8) at

night and fine in the morning! So I went back to the Dr. where I received a shot

of prednisone (125mg?) and looked at by other interns but I told them not to

touch my hands because i could not stand the pain!!!!!

Well, that didnt help, so i called my PCP the next day and he said he wanted me

in the hospital that day. I waited for my husband to come home from work ( 5

hours-who said I should have called him from work and he would have taken me

right away)...and I waited in my hospitals e.r. for 4 hours in sooooo much pain

and weakness...only to be told I wasn't going to be admitted because they were

on bypass!!!!!! Why they didn't tell me this 4 hours ago I don't know....so I

left and told them they better not bill me for sitting in their waiting room!!

then the next day my PCP called me and said to go to the nearest hospital (even

though my insurance would not be there)...so I went to the nearest hospital and

was admitted for a week!..the dr.'s there FINALLY said I had a rare disease

called Stills...and I left with more pills..prednisone 80mg a day, and tylenol

#3 every 4-6 hours for the pain...I went to one Rheumatologist, but my insurance

would not pay for an out of network Dr....and I am sure I could not afford him

without insurance!! So i am going to another Rheumy-whom I like alot too...she

put me on the methotrxate and is lowering the prednisone slowly....I am now down

to 15mg of prednisone a day and on Sundays I take 15mg. of

Methotrexate....amongst other pills...but that is another book...and that is

where i am now...I have not been back to work and I will not go back until I

feel much better...I will not wear myself out again...I worked a lot of extra

hours and where did it get me??? I am very tired and I get

weak alot but that is when i rest...I get spurts of energy and then get

sooooooooo tired...It will even out and I feel like I am getting better..

slowly..

Did your dr. also prescribe Folic Acid for you? If you are on the methotrexate

it helps so you dont get anemic....

Any questions or just feel like talking...ANYTIME email me:

tototoo42@...

or ANYONE in the group...they are all here for you and all of us...

tomorrow is my birthday so I have to get rest so i have energy for all the

presents my family is going to get for me!!!!!(yeah right!) and for all the

partying i will be doing (lol )

Diane 42

p.s. Just remember that your family needs YOU! I have not been at work since

Sept. and like i said i dont plan on going back till I feel better..a lot

better...it will be hard with the $$$$ but we will survive...if I go back too

soon, maybe I won't!

, what happened when you went off MTX? Mark really wants to get off of it

and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Happy Birthday!!! We will sing to you at dinner tonight...so if you hear tiny

voices in your ear that are just screeching out of tune, it's us! LOL

Re: MTX

Hi Jody and Mark,

How are you both this evening?

I have been battling 'the dragon' since September of 2007.

I started out with the rash and went to the. e.r. (I work in a hospital so I

thought I would be able to save on a Dr.. visit to my PCP and not have to wait 2

weeks for an appt). the e.r. Dr. there said I was having an allergic reaction to

something... .and gave me prednisone 20 mg. to be taken every day for a

week....well, in the mean time, my husband and I went away for the

weekend..Galena, Illinois.

But I was sooooooo tired by the time we got to Galena, (3 hour drive?) and in

soooooooo much pain I went straight to sleep after taking 4 Advils.

The rash didnt clear up, so I went to my PCP who put me on 10 mg prednisone (I

thought if 20 didnt help, why would 10!) but I also was given 120 mg allegra

Then my hands had swollen up 3x their size and I was having fevers ( 103.8) at

night and fine in the morning! So I went back to the Dr. where I received a shot

of prednisone (125mg?) and looked at by other interns but I told them not to

touch my hands because i could not stand the pain!!!!!

Well, that didnt help, so i called my PCP the next day and he said he wanted me

in the hospital that day. I waited for my husband to come home from work ( 5

hours-who said I should have called him from work and he would have taken me

right away)...and I waited in my hospitals e.r. for 4 hours in sooooo much pain

and weakness...only to be told I wasn't going to be admitted because they were

on bypass!!!!!! Why they didn't tell me this 4 hours ago I don't know....so I

left and told them they better not bill me for sitting in their waiting room!!

then the next day my PCP called me and said to go to the nearest hospital (even

though my insurance would not be there)...so I went to the nearest hospital and

was admitted for a week!..the dr.'s there FINALLY said I had a rare disease

called Stills...and I left with more pills..prednisone 80mg a day, and tylenol

#3 every 4-6 hours for the pain...I went to one Rheumatologist, but my insurance

would not pay for an out of network Dr....and I am sure I could not afford him

without insurance!! So i am going to another Rheumy-whom I like alot too...she

put me on the methotrxate and is lowering the prednisone slowly....I am now down

to 15mg of prednisone a day and on Sundays I take 15mg. of Methotrexate.

....amongst other pills...but that is another book...and that is where i am

now....I have not been back to work and I will not go back until I feel much

better...I will not wear myself out again...I worked a lot of extra hours and

where did it get me??? I am

very tired and I get weak alot but that is when i rest...I get spurts of energy

and then get sooooooooo tired...It will even out and I feel like I am getting

better.. slowly..

Did your dr. also prescribe Folic Acid for you? If you are on the methotrexate

it helps so you dont get anemic....

Any questions or just feel like talking...ANYTIME email me:

tototoo42aol (DOT) com

or ANYONE in the group...they are all here for you and all of us...

tomorrow is my birthday so I have to get rest so i have energy for all the

presents my family is going to get for me!!!!!(yeah right!) and for all the

partying i will be doing (lol )

Diane 42

p.s. Just remember that your family needs YOU! I have not been at work since

Sept. and like i said i dont plan on going back till I feel better..a lot

better...it will be hard with the $$$$ but we will survive...if I go back too

soon, maybe I won't!

, what happened when you went off MTX? Mark really wants to get off of it

and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

____________ _________ _________ _________ _________ _________ _

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/

;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

[Guest guest]

Hi Jody (and Mark),

I am not on MTX. I couldn't handle the side effects anymore (bad

blisters in my mouth). So my rheumy switched me to Arava and

Plaquenil and that has made a huge difference for me.

There are potentially a whole host of other medications out there.

But what you have to remember and understand - it takes time. There

is no miracle, nothing yuo are gonig to take that fixes everythign,

at least not right away. It took me 2 years to find the right

combination of medication that actually lifted me to a level of

functioning I didn't know I could get back. I am still workign

through things and I still think we can do better, but it takes a

lot of time for the drugs to work. It took me two months to see any

results with Kineret and only when I paired it with Plaquenil and

Arava did i get the boost to where I am now.

The sad truth, we have Stills, we are sick. We have to accept it,

change the things we can, and live life with new boundaries. As

i've said to many here, i really don't mind. Sure I miss the " old "

angela a lot, but you know, she's gone, so I have to embrace

the " new " angela and work with her.

And you know what - I see some of the old angela coming back but she

has the knowledge of the new angela so she comprehends her limits.

Houston

[Guest guest]

Hi Jody and Mark,

I tried to go off of MTX once. I have been on MTX since 2002 and Kineret

since 2005 (Remicade before that for 2 years). When I went off of it, I was

off for about 4 weeks. My joint swelling got worse almost immediately and

then I really start to have problems with my bone spurs with my back.

I think the real issue is that you have to do what is right for you. I

really wanted to get off of it and try a low dose of pred and Kineret only

to see what would happen. For me, it didn't work. But that doesn't mean

that it won't work for you. That's the thing with stills. It really is

different for everyone. I guess the only thing I'd caution you on is the

timing. Your big flare just happened, so I think you guys should really

have a good talk with your doctors and let them guide you in how to tapper

off of MTX.

If you are wanting to get off of MTX because of how it makes you feel (sick

to your stomach, etc) there are some things that can help. Possibly

lowering the dose along with taking Folic Acid or switching to Luevoricin

(spelling is wrong, but you take it the morning after MTX and it helps a

ton). I switched to Shots of MTX and it doesn't upset my system as much.

Anyway - the number one point to remember is that we can tell you our

stories, but that everyone reacts differently to medicines and that you have

to do what is best for you- Trust your body. Try things out slowly - if

there is one thing I've learned with medicines it's that if you try to

change them fast and radically with stills, things go haywire. So I always

go slowly now and I try to not add more than one medicine at a time (and if

we are adding a medicine, we don't take one away - and the same goes for

taking one away - we don't add one if we are deleting one because it is too

hard to tell what is working and what isn't).

Anyway - I hope this helps you both.

-- MTX

, what happened when you went off MTX? Mark really wants to get off of

it and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/

_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Hi Jody.

I am glad he is up and reading some emails.

When I went off of MTX, I had been on Kineret for some time. So luckily, I did

not have any problems going off of MTX. The only med I have ever had problems

getting off is Prednisone (steroids). When you are taking synthetic steroids,

your body stops producing steroids so then, you body has come to rely on the

synthetic.

If you ask around, most people's relationship with steroids is a love/hate.

You love them because they mask the pain your body feels and permits you to

still live a fairly normal life. You HATE them because there are so many darn

side effects. I gained about 60 pounds, I was extremely moody and couldn't

sleep. One good thing, food tasted exceptionally good. :-)

Keep on...

KEEPIN' ON.

in Houston

Jody Klein wrote:

, what happened when you went off MTX? Mark really wants to get

off of it and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

__________________________________________________________

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now.

http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ

[Guest guest]

Yes, he takes 1mg of folic acid daily to keep him from getting sores in his

mouth from the MTX.

Re: MTX

Hi Jody and Mark,

How are you both this evening?

I have been battling 'the dragon' since September of 2007.

I started out with the rash and went to the. e.r. (I work in a hospital so I

thought I would be able to save on a Dr. visit to my PCP and not have to wait 2

weeks for an appt). the e.r. Dr. there said I was having an allergic reaction to

something... .and gave me prednisone 20 mg. to be taken every day for a

week....well, in the mean time, my husband and I went away for the

weekend..Galena, Illinois.

But I was sooooooo tired by the time we got to Galena, (3 hour drive?) and in

soooooooo much pain I went straight to sleep after taking 4 Advils.

The rash didnt clear up, so I went to my PCP who put me on 10 mg prednisone (I

thought if 20 didnt help, why would 10!) but I also was given 120 mg allegra

Then my hands had swollen up 3x their size and I was having fevers ( 103.8) at

night and fine in the morning! So I went back to the Dr. where I received a shot

of prednisone (125mg?) and looked at by other interns but I told them not to

touch my hands because i could not stand the pain!!!!!

Well, that didnt help, so i called my PCP the next day and he said he wanted me

in the hospital that day. I waited for my husband to come home from work ( 5

hours-who said I should have called him from work and he would have taken me

right away)...and I waited in my hospitals e.r. for 4 hours in sooooo much pain

and weakness...only to be told I wasn't going to be admitted because they were

on bypass!!!!!! Why they didn't tell me this 4 hours ago I don't know....so I

left and told them they better not bill me for sitting in their waiting room!!

then the next day my PCP called me and said to go to the nearest hospital (even

though my insurance would not be there)...so I went to the nearest hospital and

was admitted for a week!..the dr.'s there FINALLY said I had a rare disease

called Stills...and I left with more pills..prednisone 80mg a day, and tylenol

#3 every 4-6 hours for the pain...I went to one Rheumatologist, but my insurance

would not pay for an out of network Dr....and I am sure I could not afford him

without insurance!! So i am going to another Rheumy-whom I like alot too...she

put me on the methotrxate and is lowering the prednisone slowly.....I am now

down to 15mg of prednisone a day and on Sundays I take 15mg. of Methotrexate.

....amongst other pills...but that is another book...and that is where i am

now...I have not been back to work and I will not go back until I feel much

better...I will not wear myself out again...I worked a lot of extra hours and

where did it get me??? I am

very tired and I get weak alot but that is when i rest...I get spurts of energy

and then get sooooooooo tired...It will even out and I feel like I am getting

better.. slowly..

Did your dr. also prescribe Folic Acid for you? If you are on the methotrexate

it helps so you dont get anemic....

Any questions or just feel like talking...ANYTIME email me:

tototoo42aol (DOT) com

or ANYONE in the group...they are all here for you and all of us...

tomorrow is my birthday so I have to get rest so i have energy for all the

presents my family is going to get for me!!!!!(yeah right!) and for all the

partying i will be doing (lol )

Diane 42

p.s. Just remember that your family needs YOU! I have not been at work since

Sept. and like i said i dont plan on going back till I feel better..a lot

better...it will be hard with the $$$$ but we will survive...if I go back too

soon, maybe I won't!

, what happened when you went off MTX? Mark really wants to get off of it

and he is wondering how your body reacted.

BTW folks...Mark is sitting next to me reading e-mails! He says he may even

respond to one soon. LOL :-)

____________ _________ _________ _________ _________ _________ _

Be a better friend, newshound, and

know-it-all with Yahoo! Mobile. Try it now. http://mobile. yahoo.com/

;_ylt=Ahu06i62sR 8HDtDypao8Wcj9tA cJ

[Guest guest]

Thanks .

Re: MTX

Hi Jody (and Mark),

I am not on MTX. I couldn't handle the side effects anymore (bad

blisters in my mouth). So my rheumy switched me to Arava and

Plaquenil and that has made a huge difference for me.

There are potentially a whole host of other medications out there.

But what you have to remember and understand - it takes time. There

is no miracle, nothing yuo are gonig to take that fixes everythign,

at least not right away. It took me 2 years to find the right

combination of medication that actually lifted me to a level of

functioning I didn't know I could get back. I am still workign

through things and I still think we can do better, but it takes a

lot of time for the drugs to work. It took me two months to see any

results with Kineret and only when I paired it with Plaquenil and

Arava did i get the boost to where I am now.

The sad truth, we have Stills, we are sick. We have to accept it,

change the things we can, and live life with new boundaries. As

i've said to many here, i really don't mind. Sure I miss the " old "

angela a lot, but you know, she's gone, so I have to embrace

the " new " angela and work with her.

And you know what - I see some of the old angela coming back but she

has the knowledge of the new angela so she comprehends her limits.

Houston

________________________________________________________________________________\

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