Re: gallbladder operation.

[Guest guest]

I am never sure how to just get a question out there so I selected your e-mail

address hoping that someone would respond.I have have been in a flare since

March and having a very difficult time getting under control. I have been on

prednisone for 6 years non stop. This past year it has been increasing. Right

now I am on 24mg of methprednisone. I now may need to get my gallbladder out and

I am terrified. Has anyone ever been operated on when they were on high doses of

prednisone and their body in a flare? I am actually going for a test on Monday

that will determine if my gallbladder is functioning. I have had my gallbladder

filled with stones for more than 25 years. I know I can live with them as long

as it is still functioning.

I am scared because any little trauma to my body takes forever to recover.Thank

you for any feedback. everyone on this site has been so helpful.

a

________________________________

To: Stills Disease <stillsdisease >

Sent: Thursday, July 19, 2012 5:32 AM

Subject: RE: New to the group

Welcome to Simone and Mackenzie :-) Hugs Fran

To: Stillsdisease

From: butterflychaser999@...

Date: Thu, 19 Jul 2012 00:18:05 -0700

Subject: Re: New to the group

 

   

     

     

      Hi Simone,

Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

Disease. I am so glad that the treatment they have giving you is so helpful. 

Yes steroids can be bad, and usually they can wean you off of them after awhile,

we can hope. Know that you have my support and prayers to heal and live a good

quality of life.

>To: " Stillsdisease " <Stillsdisease >

>Sent: Wednesday, July 18, 2012 5:03 PM

>Subject: New to the group

>

>

> 

>Hello,

>

>My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

>

>I was diagnosed with Still’s Disease since last year (September) and until

now I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

>I follow the treatment in the university hospital in Brazil. I really think

that exchange information about this disease is very important to patient and

its family, and can improve the life’s quality.

>

>I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease.

>

>Thanks for the help! I wish health to all.

>

>Hugs

>

>

[Guest guest]

Hi a,

 

I'm sorry it took so long to get back to you.  I hope it's not too late.  I'm

so sorry that you have to go through a gall bladder operation. But now a days

they can and sometimes do use laparoscopy where they make very small incisions 

and use a camera to see what they are doing.

 

From my understanding, I've had surgeries before while on doses of

hydrocortisone which is similar to methylprednisilone.  They usually give me

extra in my I.V. during the surgery and in the recovery room and sometimes even

the day before.  Then after surgery, I slowly wean back down again.

 

If you are taking any immunsuppresant medications such as methotrexate, or

Kineret, Enbrel etc. they usually have you stop those before surgery.

 

It's now uncommon to go through surgery on steroids like you are. But your dose

is kind of on the high side as far as what they have given to other people who

have Still's disease. It would seem like after the surgery, they may be able to

wean you down to a lower dose of it and possibly try one of the other type of

medications for the treatment of Still's.

 

When do you go to the doctor again?  Keep me posted as to your progress ok? 

I'd like to know what they end up doing. If you gall bladder is that bad, it

should help you feel better after you get it out. I can imagine much pain!

 

strength and hope,

>To: " Stillsdisease " <Stillsdisease >

>Sent: Thursday, July 19, 2012 11:05 AM

>Subject: Re: gallbladder operation.

>

>

> 

>I am never sure how to just get a question out there so I selected your e-mail

address hoping that someone would respond.I have have been in a flare since

March and having a very difficult time getting under control. I have been on

prednisone for 6 years non stop. This past year it has been increasing. Right

now I am on 24mg of methprednisone. I now may need to get my gallbladder out and

I am terrified. Has anyone ever been operated on when they were on high doses of

prednisone and their body in a flare? I am actually going for a test on Monday

that will determine if my gallbladder is functioning. I have had my gallbladder

filled with stones for more than 25 years. I know I can live with them as long

as it is still functioning.

>I am scared because any little trauma to my body takes forever to recover.Thank

you for any feedback. everyone on this site has been so helpful.

>a

>

>________________________________

>From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

>To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

>Sent: Thursday, July 19, 2012 5:32 AM

>Subject: RE: New to the group

>

>

>Welcome to Simone and Mackenzie :-) Hugs Fran

>To: mailto:Stillsdisease%40yahoogroups.com

>From: mailto:butterflychaser999%40yahoo.com

>Date: Thu, 19 Jul 2012 00:18:05 -0700

>Subject: Re: New to the group

>

> 

>

>   

>     

>     

>      Hi Simone,

>

>Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

Disease. I am so glad that the treatment they have giving you is so helpful. 

Yes steroids can be bad, and usually they can wean you off of them after awhile,

we can hope. Know that you have my support and prayers to heal and live a good

quality of life.

>

>

>

>From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

>

>>To: " mailto:Stillsdisease%40yahoogroups.com "

<mailto:Stillsdisease%40yahoogroups.com>

>

>>Sent: Wednesday, July 18, 2012 5:03 PM

>

>>Subject: New to the group

>

>>

>

>>

>

>> 

>

>>Hello,

>

>>

>

>>My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

>

>>

>

>>I was diagnosed with Still’s Disease since last year (September) and until

now I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

>

>>I follow the treatment in the university hospital in Brazil. I really think

that exchange information about this disease is very important to patient and

its family, and can improve the life’s quality.

>

>>

>

>>I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease.

>

>>

>

>>Thanks for the help! I wish health to all.

>

>>

>

>>Hugs

>

>>

>

>>

[Guest guest]

Hi ,

Thank you for your kind words. I am going for a test on Monday that will

determine if my gallbladder is functioning. If it is then most likely I will not

need the operation. I am trying not to think about it until then. It is what it

is and I know I can't run away from this body(unfortunately).  Once I know

about that, then I can begin to treat the Still's again. Kineret worked like a

miracle drug, but after 3 wks on it, off for 2 then on again  for 3 more wks, I

just couldn't tolerate the itching, inflammation, swelling, and pain at the

injection site.. Now they want me to try it again, but add methotrexate to the

mix. I really don't think it will make much difference. I guess I will try one

more time if it comes down to it.

I have had Still's disease for 6 years and never really e-mailed anyone on this

site before. I can't believe how wonderful everyone has been and extremely

helpful. Thank you again . I hope you are doing well and wish you good health.

a

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, July 21, 2012 4:06 PM

Subject: Re: gallbladder operation.

 

Hi a,

 

I'm sorry it took so long to get back to you.  I hope it's not too late.  I'm

so sorry that you have to go through a gall bladder operation. But now a days

they can and sometimes do use laparoscopy where they make very small incisions 

and use a camera to see what they are doing.

 

From my understanding, I've had surgeries before while on doses of

hydrocortisone which is similar to methylprednisilone.  They usually give me

extra in my I.V. during the surgery and in the recovery room and sometimes even

the day before.  Then after surgery, I slowly wean back down again.

 

If you are taking any immunsuppresant medications such as methotrexate, or

Kineret, Enbrel etc. they usually have you stop those before surgery.

 

It's now uncommon to go through surgery on steroids like you are. But your dose

is kind of on the high side as far as what they have given to other people who

have Still's disease. It would seem like after the surgery, they may be able to

wean you down to a lower dose of it and possibly try one of the other type of

medications for the treatment of Still's.

 

When do you go to the doctor again?  Keep me posted as to your progress ok? 

I'd like to know what they end up doing. If you gall bladder is that bad, it

should help you feel better after you get it out. I can imagine much pain!

 

strength and hope,

>To: " Stillsdisease " <Stillsdisease >

>Sent: Thursday, July 19, 2012 11:05 AM

>Subject: Re: gallbladder operation.

>

>

> 

>I am never sure how to just get a question out there so I selected your e-mail

address hoping that someone would respond.I have have been in a flare since

March and having a very difficult time getting under control. I have been on

prednisone for 6 years non stop. This past year it has been increasing. Right

now I am on 24mg of methprednisone. I now may need to get my gallbladder out and

I am terrified. Has anyone ever been operated on when they were on high doses of

prednisone and their body in a flare? I am actually going for a test on Monday

that will determine if my gallbladder is functioning. I have had my gallbladder

filled with stones for more than 25 years. I know I can live with them as long

as it is still functioning.

>I am scared because any little trauma to my body takes forever to recover.Thank

you for any feedback. everyone on this site has been so helpful.

>a

>

>________________________________

>From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

>To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

>Sent: Thursday, July 19, 2012 5:32 AM

>Subject: RE: New to the group

>

>

>Welcome to Simone and Mackenzie :-) Hugs Fran

>To: mailto:Stillsdisease%40yahoogroups.com

>From: mailto:butterflychaser999%40yahoo.com

>Date: Thu, 19 Jul 2012 00:18:05 -0700

>Subject: Re: New to the group

>

> 

>

>   

>     

>     

>      Hi Simone,

>

>Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

Disease. I am so glad that the treatment they have giving you is so helpful. 

Yes steroids can be bad, and usually they can wean you off of them after awhile,

we can hope. Know that you have my support and prayers to heal and live a good

quality of life.

>

>

>

>From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

>

>>To: " mailto:Stillsdisease%40yahoogroups.com "

<mailto:Stillsdisease%40yahoogroups.com>

>

>>Sent: Wednesday, July 18, 2012 5:03 PM

>

>>Subject: New to the group

>

>>

>

>>

>

>> 

>

>>Hello,

>

>>

>

>>My name is Simone and I am 27 years old. I´m Brazilian and I apologize for my

English, because it isn’t good. But this group have motivated I improve my

English.

>

>>

>

>>I was diagnosed with Still’s Disease since last year (September) and until

now I have been treated.  I had only one outbreak  characterized by systemic

symptoms (fever around two months, rush and itch in the body,  pain in the

articulations, and alterations in the laboratory variables. I was hospitalized

for 20 days and it was terrible for me and my family. I didn’t response to

AINE therapy, but presented good response to steroid treatment.  Now, passed 11

months, I am taking prednisone (15 mg/day); methotrexate (15 mg/week); sodium

alendronate (70 mg/week); D vitamin, omeprazole, domperidone and folic acid.

Since I started the steroid treatment, I haven’t had any signs of disease and

I have had a good evolution.  Now I work normally and my life is good and I’m

happy with my response to the treatment.

>

>>I follow the treatment in the university hospital in Brazil. I really think

that exchange information about this disease is very important to patient and

its family, and can improve the life’s quality.

>

>>

>

>>I confess that I have worried me about the stories reported in this group,

because some are very sad… and I know how is difficult to be sick. In other

hand, I am happy to meet people very solidary and willing to help others living

with this disease.

>

>>

>

>>Thanks for the help! I wish health to all.

>

>>

>

>>Hugs

>

>>

>

>>

[Guest guest]

Dear a,

I'm sorry to hear of your troubles with your gall bladder and all. I hope

you get away without the surgery, but it's so amazing what they do with

surgeries these days. My son had a very complicated esophagus surgery,

done by a robot and through 5 very tiny holes in his chest. I was very

impressed. Still, I hope you don't have to go through it in any case!

I'm most distressed that you can't tolerate the Kineret! How hard it must

be to know it's benefits, but not be able to tolerate it! I'm so sorry

about that! I know you've tried and tried, and when it's time to quit

trying you'll at least know you gave it your best shot.

Let us know how the doctor's appointment goes!

Peace and Blessings to all.

> **

>

>

> Hi ,

> Thank you for your kind words. I am going for a test on Monday that will

> determine if my gallbladder is functioning. If it is then most likely I

> will not need the operation. I am trying not to think about it until then.

> It is what it is and I know I can't run away from this

> body(unfortunately). Once I know about that, then I can begin to treat the

> Still's again. Kineret worked like a miracle drug, but after 3 wks on it,

> off for 2 then on again for 3 more wks, I just couldn't tolerate the

> itching, inflammation, swelling, and pain at the injection site.. Now they

> want me to try it again, but add methotrexate to the mix. I really don't

> think it will make much difference. I guess I will try one more time if it

> comes down to it.

> I have had Still's disease for 6 years and never really e-mailed anyone on

> this site before. I can't believe how wonderful everyone has been and

> extremely helpful. Thank you again . I hope you are doing well and wish you

> good health.

> a

>

> ________________________________

> From: Butterfly Chaser <butterflychaser999@... <javascript:_e({},

> 'cvml', 'butterflychaser999%40yahoo.com');>>

> To: " Stillsdisease <javascript:_e({}, 'cvml',

> 'Stillsdisease%40yahoogroups.com');> "

<Stillsdisease <javascript:_e({}, 'cvml',

'Stillsdisease%40yahoogroups.com');>>

>

> Sent: Saturday, July 21, 2012 4:06 PM

> Subject: Re: gallbladder operation.

>

>

>

> Hi a,

>

> I'm sorry it took so long to get back to you. I hope it's not too late.

> I'm so sorry that you have to go through a gall bladder operation. But now

> a days they can and sometimes do use laparoscopy where they make very small

> incisions and use a camera to see what they are doing.

>

> From my understanding, I've had surgeries before while on doses of

> hydrocortisone which is similar to methylprednisilone. They usually give

> me extra in my I.V. during the surgery and in the recovery room and

> sometimes even the day before. Then after surgery, I slowly wean back down

> again.

>

> If you are taking any immunsuppresant medications such as methotrexate, or

> Kineret, Enbrel etc. they usually have you stop those before surgery.

>

> It's now uncommon to go through surgery on steroids like you are. But your

> dose is kind of on the high side as far as what they have given to other

> people who have Still's disease. It would seem like after the surgery, they

> may be able to wean you down to a lower dose of it and possibly try one of

> the other type of medications for the treatment of Still's.

>

> When do you go to the doctor again? Keep me posted as to your progress

> ok? I'd like to know what they end up doing. If you gall bladder is that

> bad, it should help you feel better after you get it out. I can imagine

> much pain!

>

> strength and hope,

>

>

>

> >To: " Stillsdisease " <Stillsdisease >

> >Sent: Thursday, July 19, 2012 11:05 AM

> >Subject: Re: gallbladder operation.

> >

> >

> >

> >I am never sure how to just get a question out there so I selected your

> e-mail address hoping that someone would respond.I have have been in a

> flare since March and having a very difficult time getting under control. I

> have been on prednisone for 6 years non stop. This past year it has been

> increasing. Right now I am on 24mg of methprednisone. I now may need to get

> my gallbladder out and I am terrified. Has anyone ever been operated on

> when they were on high doses of prednisone and their body in a flare? I am

> actually going for a test on Monday that will determine if my gallbladder

> is functioning. I have had my gallbladder filled with stones for more than

> 25 years. I know I can live with them as long as it is still functioning.

> >I am scared because any little trauma to my body takes forever to

> recover.Thank you for any feedback. everyone on this site has been so

> helpful.

> >a

> >

> >________________________________

> >From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

> >To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

> >Sent: Thursday, July 19, 2012 5:32 AM

> >Subject: RE: New to the group

> >

> >

> >Welcome to Simone and Mackenzie :-) Hugs Fran

> >To: mailto:Stillsdisease%40yahoogroups.com

> >From: mailto:butterflychaser999%40yahoo.com

> >Date: Thu, 19 Jul 2012 00:18:05 -0700

> >Subject: Re: New to the group

> >

> >

> >

> >

> >

> >

> > Hi Simone,

> >

> >Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

> Disease. I am so glad that the treatment they have giving you is so

> helpful. Yes steroids can be bad, and usually they can wean you off of

> them after awhile, we can hope. Know that you have my support and prayers

> to heal and live a good quality of life.

> >

> >

> >

> >From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

> >

> >>To: " mailto:Stillsdisease%40yahoogroups.com " <mailto:

> Stillsdisease%40yahoogroups.com>

> >

> >>Sent: W

>

>

--

*Holly *

*hollydorst@...*

*

*

[Guest guest]

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, July 21, 2012 11:01 PM

Subject: Re: gallbladder operation.

Dear a,

I'm sorry to hear of your troubles with your gall bladder and all.  I hope

you get away without the surgery, but it's so amazing what they do with

surgeries these days.  My son had a very complicated esophagus surgery,

done by a robot and through 5 very tiny holes in his chest.  I was very

impressed.  Still, I hope you don't have to go through it in any case!

I'm most distressed that you can't tolerate the Kineret!  How hard it must

be to know it's benefits, but not be able to tolerate it!  I'm so sorry

about that!  I know you've tried and tried, and when it's time to quit

trying you'll at least know you gave it your best shot.

Let us know how the doctor's appointment goes!

Peace and Blessings to all.

> **

>

>

> Hi ,

> Thank you for your kind words. I am going for a test on Monday that will

> determine if my gallbladder is functioning. If it is then most likely I

> will not need the operation. I am trying not to think about it until then.

> It is what it is and I know I can't run away from this

> body(unfortunately).  Once I know about that, then I can begin to treat the

> Still's again. Kineret worked like a miracle drug, but after 3 wks on it,

> off for 2 then on again  for 3 more wks, I just couldn't tolerate the

> itching, inflammation, swelling, and pain at the injection site.. Now they

> want me to try it again, but add methotrexate to the mix. I really don't

> think it will make much difference. I guess I will try one more time if it

> comes down to it.

> I have had Still's disease for 6 years and never really e-mailed anyone on

> this site before. I can't believe how wonderful everyone has been and

> extremely helpful. Thank you again . I hope you are doing well and wish you

> good health.

> a

>

> ________________________________

> From: Butterfly Chaser <butterflychaser999@... <javascript:_e({},

> 'cvml', 'butterflychaser999%40yahoo.com');>>

> To: " Stillsdisease <javascript:_e({}, 'cvml',

> 'Stillsdisease%40yahoogroups.com');> "

<Stillsdisease <javascript:_e({}, 'cvml',

'Stillsdisease%40yahoogroups.com');>>

>

> Sent: Saturday, July 21, 2012 4:06 PM

> Subject: Re: gallbladder operation.

>

>

>

> Hi a,

>

> I'm sorry it took so long to get back to you.  I hope it's not too late.

> I'm so sorry that you have to go through a gall bladder operation. But now

> a days they can and sometimes do use laparoscopy where they make very small

> incisions  and use a camera to see what they are doing.

>

> From my understanding, I've had surgeries before while on doses of

> hydrocortisone which is similar to methylprednisilone.  They usually give

> me extra in my I.V. during the surgery and in the recovery room and

> sometimes even the day before.  Then after surgery, I slowly wean back down

> again.

>

> If you are taking any immunsuppresant medications such as methotrexate, or

> Kineret, Enbrel etc. they usually have you stop those before surgery.

>

> It's now uncommon to go through surgery on steroids like you are. But your

> dose is kind of on the high side as far as what they have given to other

> people who have Still's disease. It would seem like after the surgery, they

> may be able to wean you down to a lower dose of it and possibly try one of

> the other type of medications for the treatment of Still's.

>

> When do you go to the doctor again?  Keep me posted as to your progress

> ok?  I'd like to know what they end up doing. If you gall bladder is that

> bad, it should help you feel better after you get it out. I can imagine

> much pain!

>

> strength and hope,

>

>

>

> >To: " Stillsdisease " <Stillsdisease >

> >Sent: Thursday, July 19, 2012 11:05 AM

> >Subject: Re: gallbladder operation.

> >

> >

> >

> >I am never sure how to just get a question out there so I selected your

> e-mail address hoping that someone would respond.I have have been in a

> flare since March and having a very difficult time getting under control. I

> have been on prednisone for 6 years non stop. This past year it has been

> increasing. Right now I am on 24mg of methprednisone. I now may need to get

> my gallbladder out and I am terrified. Has anyone ever been operated on

> when they were on high doses of prednisone and their body in a flare? I am

> actually going for a test on Monday that will determine if my gallbladder

> is functioning. I have had my gallbladder filled with stones for more than

> 25 years. I know I can live with them as long as it is still functioning.

> >I am scared because any little trauma to my body takes forever to

> recover.Thank you for any feedback. everyone on this site has been so

> helpful.

> >a

> >

> >________________________________

> >From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

> >To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

> >Sent: Thursday, July 19, 2012 5:32 AM

> >Subject: RE: New to the group

> >

> >

> >Welcome to Simone and Mackenzie :-) Hugs Fran

> >To: mailto:Stillsdisease%40yahoogroups.com

> >From: mailto:butterflychaser999%40yahoo.com

> >Date: Thu, 19 Jul 2012 00:18:05 -0700

> >Subject: Re: New to the group

> >

> >

> >

> >

> >

> >

> >      Hi Simone,

> >

> >Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

> Disease. I am so glad that the treatment they have giving you is so

> helpful.  Yes steroids can be bad, and usually they can wean you off of

> them after awhile, we can hope. Know that you have my support and prayers

> to heal and live a good quality of life.

> >

> >

> >

> >From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

> >

> >>To: " mailto:Stillsdisease%40yahoogroups.com " <mailto:

> Stillsdisease%40yahoogroups.com>

> >

> >>Sent: W

> 

>

--

*Holly *

*hollydorst@...*

*

*

[Guest guest]

H i Holly,

It was great to hear from you. Thank you for your kind and encouraging words. It

is amazing what the doctors did for your son. I hope he is doing well.

I am going for a Hyda scan this afternoon and I will certainly keep you posted

about my results. If everything is OK I feel as though I need to give the

kineret one more try with the other medications. If I can't tolerate it then, as

you said, I know I have given it my all. 

Take care and have a peaceful day!

a

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, July 21, 2012 11:01 PM

Subject: Re: gallbladder operation.

Dear a,

I'm sorry to hear of your troubles with your gall bladder and all.  I hope

you get away without the surgery, but it's so amazing what they do with

surgeries these days.  My son had a very complicated esophagus surgery,

done by a robot and through 5 very tiny holes in his chest.  I was very

impressed.  Still, I hope you don't have to go through it in any case!

I'm most distressed that you can't tolerate the Kineret!  How hard it must

be to know it's benefits, but not be able to tolerate it!  I'm so sorry

about that!  I know you've tried and tried, and when it's time to quit

trying you'll at least know you gave it your best shot.

Let us know how the doctor's appointment goes!

Peace and Blessings to all.

> **

>

>

> Hi ,

> Thank you for your kind words. I am going for a test on Monday that will

> determine if my gallbladder is functioning. If it is then most likely I

> will not need the operation. I am trying not to think about it until then.

> It is what it is and I know I can't run away from this

> body(unfortunately).  Once I know about that, then I can begin to treat the

> Still's again. Kineret worked like a miracle drug, but after 3 wks on it,

> off for 2 then on again  for 3 more wks, I just couldn't tolerate the

> itching, inflammation, swelling, and pain at the injection site.. Now they

> want me to try it again, but add methotrexate to the mix. I really don't

> think it will make much difference. I guess I will try one more time if it

> comes down to it.

> I have had Still's disease for 6 years and never really e-mailed anyone on

> this site before. I can't believe how wonderful everyone has been and

> extremely helpful. Thank you again . I hope you are doing well and wish you

> good health.

> a

>

> ________________________________

> From: Butterfly Chaser <butterflychaser999@... <javascript:_e({},

> 'cvml', 'butterflychaser999%40yahoo.com');>>

> To: " Stillsdisease <javascript:_e({}, 'cvml',

> 'Stillsdisease%40yahoogroups.com');> "

<Stillsdisease <javascript:_e({}, 'cvml',

'Stillsdisease%40yahoogroups.com');>>

>

> Sent: Saturday, July 21, 2012 4:06 PM

> Subject: Re: gallbladder operation.

>

>

>

> Hi a,

>

> I'm sorry it took so long to get back to you.  I hope it's not too late.

> I'm so sorry that you have to go through a gall bladder operation. But now

> a days they can and sometimes do use laparoscopy where they make very small

> incisions  and use a camera to see what they are doing.

>

> From my understanding, I've had surgeries before while on doses of

> hydrocortisone which is similar to methylprednisilone.  They usually give

> me extra in my I.V. during the surgery and in the recovery room and

> sometimes even the day before.  Then after surgery, I slowly wean back down

> again.

>

> If you are taking any immunsuppresant medications such as methotrexate, or

> Kineret, Enbrel etc. they usually have you stop those before surgery.

>

> It's now uncommon to go through surgery on steroids like you are. But your

> dose is kind of on the high side as far as what they have given to other

> people who have Still's disease. It would seem like after the surgery, they

> may be able to wean you down to a lower dose of it and possibly try one of

> the other type of medications for the treatment of Still's.

>

> When do you go to the doctor again?  Keep me posted as to your progress

> ok?  I'd like to know what they end up doing. If you gall bladder is that

> bad, it should help you feel better after you get it out. I can imagine

> much pain!

>

> strength and hope,

>

>

>

> >To: " Stillsdisease " <Stillsdisease >

> >Sent: Thursday, July 19, 2012 11:05 AM

> >Subject: Re: gallbladder operation.

> >

> >

> >

> >I am never sure how to just get a question out there so I selected your

> e-mail address hoping that someone would respond.I have have been in a

> flare since March and having a very difficult time getting under control. I

> have been on prednisone for 6 years non stop. This past year it has been

> increasing. Right now I am on 24mg of methprednisone. I now may need to get

> my gallbladder out and I am terrified. Has anyone ever been operated on

> when they were on high doses of prednisone and their body in a flare? I am

> actually going for a test on Monday that will determine if my gallbladder

> is functioning. I have had my gallbladder filled with stones for more than

> 25 years. I know I can live with them as long as it is still functioning.

> >I am scared because any little trauma to my body takes forever to

> recover.Thank you for any feedback. everyone on this site has been so

> helpful.

> >a

> >

> >________________________________

> >From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

> >To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

> >Sent: Thursday, July 19, 2012 5:32 AM

> >Subject: RE: New to the group

> >

> >

> >Welcome to Simone and Mackenzie :-) Hugs Fran

> >To: mailto:Stillsdisease%40yahoogroups.com

> >From: mailto:butterflychaser999%40yahoo.com

> >Date: Thu, 19 Jul 2012 00:18:05 -0700

> >Subject: Re: New to the group

> >

> >

> >

> >

> >

> >

> >      Hi Simone,

> >

> >Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

> Disease. I am so glad that the treatment they have giving you is so

> helpful.  Yes steroids can be bad, and usually they can wean you off of

> them after awhile, we can hope. Know that you have my support and prayers

> to heal and live a good quality of life.

> >

> >

> >

> >From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

> >

> >>To: " mailto:Stillsdisease%40yahoogroups.com " <mailto:

> Stillsdisease%40yahoogroups.com>

> >

> >>Sent: W

> 

>

--

*Holly *

*hollydorst@...*

*

*

[Guest guest]

H i Holly,

It was great to hear from you. Thank you for your kind and encouraging words. It

is amazing what the doctors did for your son. I hope he is doing well.

I am going for a Hyda scan this afternoon and I will certainly keep you posted

about my results. If everything is OK I feel as though I need to give the

kineret one more try with the other medications. If I can't tolerate it then, as

you said, I know I have given it my all. 

Take care and have a peaceful day!

a

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, July 21, 2012 11:01 PM

Subject: Re: gallbladder operation.

Dear a,

I'm sorry to hear of your troubles with your gall bladder and all.  I hope

you get away without the surgery, but it's so amazing what they do with

surgeries these days.  My son had a very complicated esophagus surgery,

done by a robot and through 5 very tiny holes in his chest.  I was very

impressed.  Still, I hope you don't have to go through it in any case!

I'm most distressed that you can't tolerate the Kineret!  How hard it must

be to know it's benefits, but not be able to tolerate it!  I'm so sorry

about that!  I know you've tried and tried, and when it's time to quit

trying you'll at least know you gave it your best shot.

Let us know how the doctor's appointment goes!

Peace and Blessings to all.

> **

>

>

> Hi ,

> Thank you for your kind words. I am going for a test on Monday that will

> determine if my gallbladder is functioning. If it is then most likely I

> will not need the operation. I am trying not to think about it until then.

> It is what it is and I know I can't run away from this

> body(unfortunately).  Once I know about that, then I can begin to treat the

> Still's again. Kineret worked like a miracle drug, but after 3 wks on it,

> off for 2 then on again  for 3 more wks, I just couldn't tolerate the

> itching, inflammation, swelling, and pain at the injection site.. Now they

> want me to try it again, but add methotrexate to the mix. I really don't

> think it will make much difference. I guess I will try one more time if it

> comes down to it.

> I have had Still's disease for 6 years and never really e-mailed anyone on

> this site before. I can't believe how wonderful everyone has been and

> extremely helpful. Thank you again . I hope you are doing well and wish you

> good health.

> a

>

> ________________________________

> From: Butterfly Chaser <butterflychaser999@... <javascript:_e({},

> 'cvml', 'butterflychaser999%40yahoo.com');>>

> To: " Stillsdisease <javascript:_e({}, 'cvml',

> 'Stillsdisease%40yahoogroups.com');> "

<Stillsdisease <javascript:_e({}, 'cvml',

'Stillsdisease%40yahoogroups.com');>>

>

> Sent: Saturday, July 21, 2012 4:06 PM

> Subject: Re: gallbladder operation.

>

>

>

> Hi a,

>

> I'm sorry it took so long to get back to you.  I hope it's not too late.

> I'm so sorry that you have to go through a gall bladder operation. But now

> a days they can and sometimes do use laparoscopy where they make very small

> incisions  and use a camera to see what they are doing.

>

> From my understanding, I've had surgeries before while on doses of

> hydrocortisone which is similar to methylprednisilone.  They usually give

> me extra in my I.V. during the surgery and in the recovery room and

> sometimes even the day before.  Then after surgery, I slowly wean back down

> again.

>

> If you are taking any immunsuppresant medications such as methotrexate, or

> Kineret, Enbrel etc. they usually have you stop those before surgery.

>

> It's now uncommon to go through surgery on steroids like you are. But your

> dose is kind of on the high side as far as what they have given to other

> people who have Still's disease. It would seem like after the surgery, they

> may be able to wean you down to a lower dose of it and possibly try one of

> the other type of medications for the treatment of Still's.

>

> When do you go to the doctor again?  Keep me posted as to your progress

> ok?  I'd like to know what they end up doing. If you gall bladder is that

> bad, it should help you feel better after you get it out. I can imagine

> much pain!

>

> strength and hope,

>

>

>

> >To: " Stillsdisease " <Stillsdisease >

> >Sent: Thursday, July 19, 2012 11:05 AM

> >Subject: Re: gallbladder operation.

> >

> >

> >

> >I am never sure how to just get a question out there so I selected your

> e-mail address hoping that someone would respond.I have have been in a

> flare since March and having a very difficult time getting under control. I

> have been on prednisone for 6 years non stop. This past year it has been

> increasing. Right now I am on 24mg of methprednisone. I now may need to get

> my gallbladder out and I am terrified. Has anyone ever been operated on

> when they were on high doses of prednisone and their body in a flare? I am

> actually going for a test on Monday that will determine if my gallbladder

> is functioning. I have had my gallbladder filled with stones for more than

> 25 years. I know I can live with them as long as it is still functioning.

> >I am scared because any little trauma to my body takes forever to

> recover.Thank you for any feedback. everyone on this site has been so

> helpful.

> >a

> >

> >________________________________

> >From: Francesca Fair <mailto:francescafair%40hotmail.co.uk>

> >To: Stills Disease <mailto:stillsdisease%40yahoogroups.com>

> >Sent: Thursday, July 19, 2012 5:32 AM

> >Subject: RE: New to the group

> >

> >

> >Welcome to Simone and Mackenzie :-) Hugs Fran

> >To: mailto:Stillsdisease%40yahoogroups.com

> >From: mailto:butterflychaser999%40yahoo.com

> >Date: Thu, 19 Jul 2012 00:18:05 -0700

> >Subject: Re: New to the group

> >

> >

> >

> >

> >

> >

> >      Hi Simone,

> >

> >Welcome to the group! I am a Mom of a 30 yeard old daughter with Still's

> Disease. I am so glad that the treatment they have giving you is so

> helpful.  Yes steroids can be bad, and usually they can wean you off of

> them after awhile, we can hope. Know that you have my support and prayers

> to heal and live a good quality of life.

> >

> >

> >

> >From: Simone Cristina <mailto:simonevetusp%40yahoo.com.br>

> >

> >>To: " mailto:Stillsdisease%40yahoogroups.com " <mailto:

> Stillsdisease%40yahoogroups.com>

> >

> >>Sent: W

> 

>

--

*Holly *

*hollydorst@...*

*

*