The beast is back

[Guest guest]

My dears,

It's been some time since I wrote to u last time, that's because I wanted to do

something crazy, I wanted to stop my medication, as I felt much better and I

hate what this meds do to me, it went fine in the beginning, i stopped almost

for 6 month, I got married and started new life, in all sudden the adult onset

stills came back, much worse than the first time, I had it first in 2008, with

all the known symptoms like the fever, rash, and the hard pain, i took

methotrexate first than stopped and went to the azethoprine, all went well tell

2010, here I decided to take my chance, to go or no go with the treatment, today

I have it all and even worth, nothing is working now with me and it cant be

stopped, I am 29 a quality engineer, and waiting to see what will happen to me,

Here is my advise, never take the risk, never stop ur meds even u feel u r good.

And keep watching ur health!

[Guest guest]

I'm sorry to hear that has happened to you!!!My daughter has Still's. She is

27 years old and d autistic and can't communicate . I never know how her

meds make her feel or if in fact they are working! I can only go by blood

tests and hope the numbers go in the right direction. She takes MTX, Pred,

Oxycontin and various anti-inflams and drugs for other disorders that she

also has, sadly!I I worry about side effects of being on such drugs for so

long and have played with the idea of just stopping! You're advice has come

just at the right time. I really hope that you get back on top of it. Our

thoughts and prayers are with you..

Love and Light,

Maree, 's mum.

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of shereen

Sent: Wednesday, 6 April 2011 11:00 AM

To: Stillsdisease

Subject: The beast is back

My dears,

It's been some time since I wrote to u last time, that's because I wanted to

do something crazy, I wanted to stop my medication, as I felt much better

and I hate what this meds do to me, it went fine in the

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[Guest guest]

Shereen

 sorry this did not work out for you but your experience is also valuable

knowledge not only for your self but because you were willing to share it here

it also for all of us and many new people that come and read long before they

join.

I was forced to do as you did and had kind of the same out look. all went great

for a time and then I was hit again and from that day to now its never let up

but thankfully its never gotten harder or as hard as the first round when I was

finally DX.

It is also I would add never a good  deal to do this on your own and I do mean

never ever but it should only be done with your doctor(s) agreeing and helping

you on the path as some of our meds can make real trouble if we stop them out

right with out the right tapers and even some time kicking it back up for a time

then back down again path.

 so thanks for sharing

hugs

 

 

 

 

 

The  Redneck  

Marty G     

 

I watch the sands of time run threw the hour glass of my life knowing I can not

change what has passed.

All I can do is live for today and hope for tomorrow and that it's a better day

then the one I am leavening here today

As I move into the one filled with hope that’s called tomorrow.

Marty G

3/29/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

Thanks for your emails, I am slightly better today, my last test results are

as follow:

Feritten: 1004

TLC: 22,000

 

This was the worst, of course all results are bad, I told the doctor I cant go

back to the methotrexate because I wish to get pregnant, so currently the

doctor

described for me:

 

plaquenil: twice a day

azathioprine: 3 per day

solupred: 60 mg per day

with Calcium and bon-one

 

I am not sure if I got pregnant how will this meds affect, but I really wish to

have a baby... God help us all

 

Shereen El Morsy

 

 

________________________________

To: Stillsdisease

Sent: Wed, April 6, 2011 7:11:04 AM

Subject: Re: The beast is back

 

Shereen

 sorry this did not work out for you but your experience is also valuable

knowledge not only for your self but because you were willing to share it here

it also for all of us and many new people that come and read long before they

join.

I was forced to do as you did and had kind of the same out look. all went great

for a time and then I was hit again and from that day to now its never let up

but thankfully its never gotten harder or as hard as the first round when I was

finally DX.

It is also I would add never a good  deal to do this on your own and I do mean

never ever but it should only be done with your doctor(s) agreeing and helping

you on the path as some of our meds can make real trouble if we stop them out

right with out the right tapers and even some time kicking it back up for a time

then back down again path.

 so thanks for sharing

hugs

 

 

 

 

 

The  Redneck  

Marty G     

 

I watch the sands of time run threw the hour glass of my life knowing I can not

change what has passed.

All I can do is live for today and hope for tomorrow and that it's a better day

then the one I am leavening here today

As I move into the one filled with hope that’s called tomorrow.

Marty G

3/29/2011 

To learn more about Stills Disease or to make a tax deductible donation:

 http://www.stillsdisease.org/stills_info

[Guest guest]

My Dear Maree, your mail touched my heart, and I am happy my msg came on time

too, never stop the meds dear, the I took the MTX for almost a year and all

other meds you mentioned, I cant for sure tell you how ur daughter feel, because

this meds have different effect on each person, but the thing I can assure you

after my long experience that we get used to every thing: the pain, the meds and

even the side effects, what happen with time is usually one of two things: you

get bored with all of it, and this can be avoided with many things, like trying

to do smth new, going out, try new food or activity. The second thing is that

when have a big event in ur life, like a new job or marriage, and then you feel

these meds are taking you away from many achievements, but what happened to me

is that I found stopping the meds will make me lose it all!

So keep strong, and keep supporting your daughter, and God bless you

Shereen El Morsy

________________________________

To: Stillsdisease

Sent: Wed, April 6, 2011 4:15:13 AM

Subject: RE: The beast is back

I'm sorry to hear that has happened to you!!!My daughter has Still's. She is

27 years old and d autistic and can't communicate . I never know how her

meds make her feel or if in fact they are working! I can only go by blood

tests and hope the numbers go in the right direction. She takes MTX, Pred,

Oxycontin and various anti-inflams and drugs for other disorders that she

also has, sadly!I I worry about side effects of being on such drugs for so

long and have played with the idea of just stopping! You're advice has come

just at the right time. I really hope that you get back on top of it. Our

thoughts and prayers are with you..

Love and Light,

Maree, 's mum.

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of shereen

Sent: Wednesday, 6 April 2011 11:00 AM

To: Stillsdisease

Subject: The beast is back

My dears,

It's been some time since I wrote to u last time, that's because I wanted to

do something crazy, I wanted to stop my medication, as I felt much better

and I hate what this meds do to me, it went fine in the

Switch to:

<mailto:Stillsdisease-traditional ?subject=Change%20Delivery%

20Format:%20Traditional> Text-Only,

<mailto:Stillsdisease-digest ?subject=Email%20Delivery:%20Dig

est> Daily Digest .

<mailto:Stillsdisease-unsubscribe ?subject=Unsubscribe>

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<http://geo.yahoo.com/serv?s=97359714/grpId=2940385/grpspId=1705061589/msgId

=78861/stime=1302051591/nc1=1/nc2=2/nc3=3>

[Guest guest]

Thanks for your emails, I am slightly better today, my last test results are

as follow:

Feritten: 1004

TLC: 22,000

This was the worst, ofcourse all results are bad, I told the doctor I cant go

back to the methotrexate because I wish to get pregnant, so currently the doctor

descriped for me:

plaquenil: twice a day

Shereen El Morsy

________________________________

To: Stillsdisease

Sent: Wed, April 6, 2011 7:11:04 AM

Subject: Re: The beast is back

Shereen

sorry this did not work out for you but your experience is also valuable

knowledge not only for your self but because you were willing to share it here

it also for all of us and many new people that come and read long before they

join.

I was forced to do as you did and had kind of the same out look. all went great

for a time and then I was hit again and from that day to now its never let up

but thankfully its never gotten harder or as hard as the first round when I was

finally DX.

It is also I would add never a good deal to do this on your own and I do mean

never ever but it should only be done with your doctor(s) agreeing and helping

you on the path as some of our meds can make real trouble if we stop them out

right with out the right tapers and even some time kicking it back up for a time

then back down again path.

so thanks for sharing

hugs

The Redneck

Marty G

I watch the sands of time run threw the hour glass of my life knowing I can not

change what has passed.

All I can do is live for today and hope for tomorrow and that it's a better day

then the one I am leavening here today

As I move into the one filled with hope that’s called tomorrow.

Marty G

3/29/2011

To learn more about Stills Disease or to make a tax deductible donation:

http://www.stillsdisease.org/stills_info