Fevers

[Guest guest]

Hi Gang,

It is funny sitting here posting, after all this time in remission. A lot of

people remember me from the being of our stills group. There were only a

hand full of us, back in the early 1990's. I was super sick for almost 14

years,

had everything everybody has, In and out of the hospital all the time,

almost died several times.

Maui, is very isolated when it comes to rare diseases, and the doctors tend

to dismiss something they don't understand. I went through so much,, and so

much pain!

I am just trying to explain in as short a detail as possible right now. I

went into a spontaneous remission,for almost five years.

I started feeling like I was having bladder infections all the time and

always had a fever over the last couple of month, then the sore throat, achy

joints,very dry eyes.

I have Fibromyalgia, Srjogen syndrome, SVT, pernicious anemia etc. the list

goes on.

Anyway, my big question is, when I realized I was going out of remission

this time, I have not had a lot of pain, I am having really high fevers, dry

eyes, and just feeling punk. My sed rate, and inflammatory markers are all

really high.

Has anyone gone out of remission with just the high spiking fevers, with

very little other symptoms?

I don't want to go on any med's! But, I am not sure if there is anything I

can do to keep the inflammation and fevers down, without the med's? I also

lost almost 20 pounds, which I didn't have to lose in the first place. I am

down to 108 and 5'5. I have been prescribed Naperson, and Predisone, but, have

not taken it yet. I am taking asprin for the fevers. I am sitting here with a

103 fever and I feel like my brain is frying, I just feel so punk! I have

been trying to live as normally as possible. I am a weightlifter( nothing

accomplished like you Kirk, but I do look great for my age.(SO I am told) LOL!

I hope this ,makes since and if anyone has any advice. When I went into

remission I had been sick for 13 years, and never had a remission, so I don't

really know what I expect to happen.

Thanks for your advice, I better try to get a few hours of sleep.

much aloha, Dottie

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[Guest guest]

Hi Dottie,

I think you should try Kineret. It has helped my with the high fevers. I

still get low fevers, but they are easier to deal with than the really high

ones. You should talk to your doctor. You may also start be able to stop

losing weight.

And since we actually met, You are right - you have no more weight to lose -

so look into this fast. There is also an IL6 blocker coming out with FDA

approval soon. I know a lot of people on the board are already on it with

the trials. My Doctor wants me on it, but won't put me on it until it is

approved. I know others will know the name of it, (begins with a T) but my

fuzzy, burnt out mind from a horrible night can't remember it).

Ellen,

I agree - I hate being restricted to bed and I'm just as board as you, but

feel so crappy that I want to scream. Last night my right side hurt so bad

I felt like I was going to need to run to the bathroom to well, you guys

know... (lose everything I ate yesterday, which wasn't much).

All,

I hurt so much yesterday just from going out for early voting that I was a

basket case. Between all of the different DX's and my back getting so bad,

I feel like I'm 90 years old sometimes. I am determined to have a positive

attitude and I'm successful most of the time, but the last few days, I have

really been struggling with the pain and with vertigo from the cholestatoma

cyst in my ear. Not to mention the fact that my throat is soar all the time

and my glands always hurt, sometimes even under my arm, which really freaks

me out. I think my glands in my abdomen are swollen now, which is why I

felt so sick all night. As the little rascles would say....

Ridicoulous.....

OH Well... What are we going to do.... Live Happily or Live in a bad mood

all the time.... I'm chosing live happily, but some nights totally overtake

my decisions and pain rules. I hate that and refuse to give into it.

For years before I was DX'd we would go hiking or sking (or some kind of

activity that would require special equipment on my feet). Within an hour

or two, the boots would be killing me. My feet would hurt so bad that I'd

feel like someone was trying to tourture me for information. My husband

thought I had a low pain tolerance and yet I could have a surgery for

endometriosis (a major surgery) and be walking around the resort within

about 4 hours after the surgery. So that shot his theory to pieces.

I'm curious, did anyone ever experience anything like this before, where ski

boots, or roller blades or any other type of equipment like that made them

feel like their feet, ankles and sometimes knees where being tortured?

[Guest guest]

Hi Dottie,

I think you should try Kineret. It has helped my with the high fevers. I

still get low fevers, but they are easier to deal with than the really high

ones. You should talk to your doctor. You may also start be able to stop

losing weight.

And since we actually met, You are right - you have no more weight to lose -

so look into this fast. There is also an IL6 blocker coming out with FDA

approval soon. I know a lot of people on the board are already on it with

the trials. My Doctor wants me on it, but won't put me on it until it is

approved. I know others will know the name of it, (begins with a T) but my

fuzzy, burnt out mind from a horrible night can't remember it).

Ellen,

I agree - I hate being restricted to bed and I'm just as board as you, but

feel so crappy that I want to scream. Last night my right side hurt so bad

I felt like I was going to need to run to the bathroom to well, you guys

know... (lose everything I ate yesterday, which wasn't much).

All,

I hurt so much yesterday just from going out for early voting that I was a

basket case. Between all of the different DX's and my back getting so bad,

I feel like I'm 90 years old sometimes. I am determined to have a positive

attitude and I'm successful most of the time, but the last few days, I have

really been struggling with the pain and with vertigo from the cholestatoma

cyst in my ear. Not to mention the fact that my throat is soar all the time

and my glands always hurt, sometimes even under my arm, which really freaks

me out. I think my glands in my abdomen are swollen now, which is why I

felt so sick all night. As the little rascles would say....

Ridicoulous.....

OH Well... What are we going to do.... Live Happily or Live in a bad mood

all the time.... I'm chosing live happily, but some nights totally overtake

my decisions and pain rules. I hate that and refuse to give into it.

For years before I was DX'd we would go hiking or sking (or some kind of

activity that would require special equipment on my feet). Within an hour

or two, the boots would be killing me. My feet would hurt so bad that I'd

feel like someone was trying to tourture me for information. My husband

thought I had a low pain tolerance and yet I could have a surgery for

endometriosis (a major surgery) and be walking around the resort within

about 4 hours after the surgery. So that shot his theory to pieces.

I'm curious, did anyone ever experience anything like this before, where ski

boots, or roller blades or any other type of equipment like that made them

feel like their feet, ankles and sometimes knees where being tortured?

[Guest guest]

Hi Dottie,

I think you should try Kineret. It has helped my with the high fevers. I

still get low fevers, but they are easier to deal with than the really high

ones. You should talk to your doctor. You may also start be able to stop

losing weight.

And since we actually met, You are right - you have no more weight to lose -

so look into this fast. There is also an IL6 blocker coming out with FDA

approval soon. I know a lot of people on the board are already on it with

the trials. My Doctor wants me on it, but won't put me on it until it is

approved. I know others will know the name of it, (begins with a T) but my

fuzzy, burnt out mind from a horrible night can't remember it).

Ellen,

I agree - I hate being restricted to bed and I'm just as board as you, but

feel so crappy that I want to scream. Last night my right side hurt so bad

I felt like I was going to need to run to the bathroom to well, you guys

know... (lose everything I ate yesterday, which wasn't much).

All,

I hurt so much yesterday just from going out for early voting that I was a

basket case. Between all of the different DX's and my back getting so bad,

I feel like I'm 90 years old sometimes. I am determined to have a positive

attitude and I'm successful most of the time, but the last few days, I have

really been struggling with the pain and with vertigo from the cholestatoma

cyst in my ear. Not to mention the fact that my throat is soar all the time

and my glands always hurt, sometimes even under my arm, which really freaks

me out. I think my glands in my abdomen are swollen now, which is why I

felt so sick all night. As the little rascles would say....

Ridicoulous.....

OH Well... What are we going to do.... Live Happily or Live in a bad mood

all the time.... I'm chosing live happily, but some nights totally overtake

my decisions and pain rules. I hate that and refuse to give into it.

For years before I was DX'd we would go hiking or sking (or some kind of

activity that would require special equipment on my feet). Within an hour

or two, the boots would be killing me. My feet would hurt so bad that I'd

feel like someone was trying to tourture me for information. My husband

thought I had a low pain tolerance and yet I could have a surgery for

endometriosis (a major surgery) and be walking around the resort within

about 4 hours after the surgery. So that shot his theory to pieces.

I'm curious, did anyone ever experience anything like this before, where ski

boots, or roller blades or any other type of equipment like that made them

feel like their feet, ankles and sometimes knees where being tortured?

[Guest guest]

Wow ! My husband also thought i had a low tolerance for

pain. For the longest time he'd look at me as though I was a baby

complaining of a paper cut. That is until he caught the Flu and

ached all over. I told him that would be a good day for me to feel

like that, I think it put things in perspective for him.

As for special equipment on the feet or anywhere else...YES! Now I

have to be careful as to which sneakers I can wear for work and the

thickness of the socks as well. Not that it qualifies as " special

equipment " but after an hour or so I'd start to tear from the pain

(not discomfort) and my customers would want to know what's going

on. As far as they are concerned everything is " fabulous " and I'm

tearing due to " dry eye " . You know that's bogus but I'm not about to

tell my customers the truth - it might scare them.

As for choosing to be happy or not...Honey, I've often said my

choices were to laugh or cry - I prefer to laugh. It not only sounds

better but laughter makes me feel better as well.

Now please excuse me, I'm off to get my nails done before I have to

go to the therapist with and then work. By the way, for anyone

else that's reading this, and I are doing well and I think

therapy is helping us tremendously.

Take care and be well.

Ellen

[Guest guest]

Wow ! My husband also thought i had a low tolerance for

pain. For the longest time he'd look at me as though I was a baby

complaining of a paper cut. That is until he caught the Flu and

ached all over. I told him that would be a good day for me to feel

like that, I think it put things in perspective for him.

As for special equipment on the feet or anywhere else...YES! Now I

have to be careful as to which sneakers I can wear for work and the

thickness of the socks as well. Not that it qualifies as " special

equipment " but after an hour or so I'd start to tear from the pain

(not discomfort) and my customers would want to know what's going

on. As far as they are concerned everything is " fabulous " and I'm

tearing due to " dry eye " . You know that's bogus but I'm not about to

tell my customers the truth - it might scare them.

As for choosing to be happy or not...Honey, I've often said my

choices were to laugh or cry - I prefer to laugh. It not only sounds

better but laughter makes me feel better as well.

Now please excuse me, I'm off to get my nails done before I have to

go to the therapist with and then work. By the way, for anyone

else that's reading this, and I are doing well and I think

therapy is helping us tremendously.

Take care and be well.

Ellen

[Guest guest]

Wow ! My husband also thought i had a low tolerance for

pain. For the longest time he'd look at me as though I was a baby

complaining of a paper cut. That is until he caught the Flu and

ached all over. I told him that would be a good day for me to feel

like that, I think it put things in perspective for him.

As for special equipment on the feet or anywhere else...YES! Now I

have to be careful as to which sneakers I can wear for work and the

thickness of the socks as well. Not that it qualifies as " special

equipment " but after an hour or so I'd start to tear from the pain

(not discomfort) and my customers would want to know what's going

on. As far as they are concerned everything is " fabulous " and I'm

tearing due to " dry eye " . You know that's bogus but I'm not about to

tell my customers the truth - it might scare them.

As for choosing to be happy or not...Honey, I've often said my

choices were to laugh or cry - I prefer to laugh. It not only sounds

better but laughter makes me feel better as well.

Now please excuse me, I'm off to get my nails done before I have to

go to the therapist with and then work. By the way, for anyone

else that's reading this, and I are doing well and I think

therapy is helping us tremendously.

Take care and be well.

Ellen

[Guest guest]

Amazing Ellen. Finally someone else that has experienced this. It drove me

nuts. I have the same issue with socks, shoes, etc. I have to by larger

socks than my feet need because the smaller ones hurt so bad... It sounds so

crazy, but it's so true.

Sometimes it sounds like I'm crazy, but I know I'm not. The skiing, etc,

all was years ago, before this all kicked in big time.

I'm glad the counseling is helping. I chose to laugh too. Anyway, if I

cry, it just makes my ear hurt < how pathetic is that ?>

Many nights I can't even let the blankets touch my feet.

Well, have a good day. Hang in there.

[Guest guest]

Amazing Ellen. Finally someone else that has experienced this. It drove me

nuts. I have the same issue with socks, shoes, etc. I have to by larger

socks than my feet need because the smaller ones hurt so bad... It sounds so

crazy, but it's so true.

Sometimes it sounds like I'm crazy, but I know I'm not. The skiing, etc,

all was years ago, before this all kicked in big time.

I'm glad the counseling is helping. I chose to laugh too. Anyway, if I

cry, it just makes my ear hurt < how pathetic is that ?>

Many nights I can't even let the blankets touch my feet.

Well, have a good day. Hang in there.

[Guest guest]

Amazing Ellen. Finally someone else that has experienced this. It drove me

nuts. I have the same issue with socks, shoes, etc. I have to by larger

socks than my feet need because the smaller ones hurt so bad... It sounds so

crazy, but it's so true.

Sometimes it sounds like I'm crazy, but I know I'm not. The skiing, etc,

all was years ago, before this all kicked in big time.

I'm glad the counseling is helping. I chose to laugh too. Anyway, if I

cry, it just makes my ear hurt < how pathetic is that ?>

Many nights I can't even let the blankets touch my feet.

Well, have a good day. Hang in there.

[Guest guest]

As my son would say OMG! I can't have my feet covered by a blanket.

Believe it or not it has nothing to do with pain, it's because I

actually get to hot. I'm not kidding, it seems if my feet are covered

I heat up something awful and begin to sweat even if it's 73 degrees in

the house. When I go for massage therapy I have the therapist turn off

the heater under the table. It's not normal, most people want the

heated table, I can't deal with it.

I can't wear slippers either and I'm very careful about going up and

down stairs because my ankles are so painful. I have to tell you I'm

stunned you have the same issues; I thought I was alone in this one.

Odd as it sounds thanks for bringing a smile to my face. It's good to

know I'm not alone here.

Take care and be well.

Ellen

[Guest guest]

As my son would say OMG! I can't have my feet covered by a blanket.

Believe it or not it has nothing to do with pain, it's because I

actually get to hot. I'm not kidding, it seems if my feet are covered

I heat up something awful and begin to sweat even if it's 73 degrees in

the house. When I go for massage therapy I have the therapist turn off

the heater under the table. It's not normal, most people want the

heated table, I can't deal with it.

I can't wear slippers either and I'm very careful about going up and

down stairs because my ankles are so painful. I have to tell you I'm

stunned you have the same issues; I thought I was alone in this one.

Odd as it sounds thanks for bringing a smile to my face. It's good to

know I'm not alone here.

Take care and be well.

Ellen

[Guest guest]

Hi Ellen

How about swapping feet for a few days. Mine are the opposite to yours they

are icy cold, I could keep things fresh for days if the fridge broke down.

At night I put fluffy socks on and when I take them off my feet are just as

cold. Anyway hope you are not too uncomfortable at the moment.

Joan U.K.

[Guest guest]

Hey there Joan!

You're too funny and anytime you're ready for the swap - bring it on!

I'm doing fairly well. I've had to up the prednisone again because of

my back. I had dropped to 15 mgs for two weeks in hopes that my body

would " even " out with the lower dose. It didn't happen obviously and I

couldn't take the pain anymore so I brought it back up to 20 mgs and

I'm more comfortable. Of course, I'm perspiring much more so I guess

there's a trade off.

Now tell me about you. How have you been doing?

Take care and be well.

Ellen

[Guest guest]

Ellen, I'm so glad you and are doing therapy...and I'm happy it's working

out for you. I've been wondering how you were doing on that front...you always

put on such a brave a cheerful face. What a brave woman you are...and an

inspiration.

in Tx

----- Original Message -----

[Guest guest]

wow again we think we are the lone ones in some thing only to read we are not .

I am not one that feels to hot but I have to sleep with my feet uncoverd or I do

get to hot and I sweet bad . I also find it hurts my feet .I also have a lot of

pain in the ankels and well as the days are going by the pain is getting some

what more .

 so nice to reqad there are other naked feet sleepers out here and that i am not

the only naked toe and foot person LOL

hugs all 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

wow again we think we are the lone ones in some thing only to read we are not .

I am not one that feels to hot but I have to sleep with my feet uncoverd or I do

get to hot and I sweet bad . I also find it hurts my feet .I also have a lot of

pain in the ankels and well as the days are going by the pain is getting some

what more .

 so nice to reqad there are other naked feet sleepers out here and that i am not

the only naked toe and foot person LOL

hugs all 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

wow again we think we are the lone ones in some thing only to read we are not .

I am not one that feels to hot but I have to sleep with my feet uncoverd or I do

get to hot and I sweet bad . I also find it hurts my feet .I also have a lot of

pain in the ankels and well as the days are going by the pain is getting some

what more .

 so nice to reqad there are other naked feet sleepers out here and that i am not

the only naked toe and foot person LOL

hugs all 

the  rednecks

Marty & G.

the redneck's my space http://www.myspace.com/martyg58

 

 Stills ; An illness I know to well!

To learn about Stills  http://www.stillsdisease.org/stills_info

If you find yourself in a hole, the first thing to do is stop diggin'.

 

In the old days a man who saved money was a miser; nowadays he's a wonder. 

~Author Unknown

 

" Taking my gun away because I might shoot someone is like cutting my tongue out

because I might yell `Fire!' in a crowded theater. "

-- Venetoklis

 

A nation can survive its fools and even the ambitious. But it cannot survive

treason from within.

                                                     -- Cicero

[Guest guest]

Hi Ellen

To be quite honest, I am not too sure how I am at the moment. I started on

Humira 12 weeks ago and the first injection I had an ulcerated throat but

the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

I had so much more energy and really couldn't believe I was almost my old

self, but after that my joints were a bit better but for some reason my

muscles have really been aching. My Rheumy cut my Methetraxate by half

because he thought it was too strong with the Humira maybe that's the

reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

can talk to as I feel the medication is not quite right at the moment very

hit and miss.

It is good that you can make small adjustments to your medication yourself.

I am very sensible with regards to medication but inbetween hospital visits

if I think I need help with dosage I have to go to my Doctor but the silly

thing is that she always tries to put my prednisilone up much higher than I

want . It would be so much easier if I could just ring the hospital for

their advice - but that's the system unfortunately.

I am going to hot foot it - sorry didn't mean to draw your attention to

them again and watch some TV

Hope your pain has eased with the higher dose of steroids.

All the best

[Guest guest]

Hi Ellen

To be quite honest, I am not too sure how I am at the moment. I started on

Humira 12 weeks ago and the first injection I had an ulcerated throat but

the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

I had so much more energy and really couldn't believe I was almost my old

self, but after that my joints were a bit better but for some reason my

muscles have really been aching. My Rheumy cut my Methetraxate by half

because he thought it was too strong with the Humira maybe that's the

reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

can talk to as I feel the medication is not quite right at the moment very

hit and miss.

It is good that you can make small adjustments to your medication yourself.

I am very sensible with regards to medication but inbetween hospital visits

if I think I need help with dosage I have to go to my Doctor but the silly

thing is that she always tries to put my prednisilone up much higher than I

want . It would be so much easier if I could just ring the hospital for

their advice - but that's the system unfortunately.

I am going to hot foot it - sorry didn't mean to draw your attention to

them again and watch some TV

Hope your pain has eased with the higher dose of steroids.

All the best

[Guest guest]

Hi Ellen

To be quite honest, I am not too sure how I am at the moment. I started on

Humira 12 weeks ago and the first injection I had an ulcerated throat but

the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

I had so much more energy and really couldn't believe I was almost my old

self, but after that my joints were a bit better but for some reason my

muscles have really been aching. My Rheumy cut my Methetraxate by half

because he thought it was too strong with the Humira maybe that's the

reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

can talk to as I feel the medication is not quite right at the moment very

hit and miss.

It is good that you can make small adjustments to your medication yourself.

I am very sensible with regards to medication but inbetween hospital visits

if I think I need help with dosage I have to go to my Doctor but the silly

thing is that she always tries to put my prednisilone up much higher than I

want . It would be so much easier if I could just ring the hospital for

their advice - but that's the system unfortunately.

I am going to hot foot it - sorry didn't mean to draw your attention to

them again and watch some TV

Hope your pain has eased with the higher dose of steroids.

All the best

[Guest guest]

Hi Joan,

I am on Kineret and It worked, for a while. Its not working great anymore.

I found I had to take MTX with it. MY doc is waiting for Toc(however it is

spelled - I just woke up again with a roaring headache and fever) to come

out. He wants to put me on that one.

I do remember my other doc and the one here saying that basically Kineret

and the IL6 blocker (Toc...) are both better for stills than the TNF ones

(Humari, Enbrl, Remicade) in general, but that it always depends on the

Person... Ha.. dosen't that help. So in general He would choose the Two top

ones over the TNF blockers, but if they don't work, he would try the TNF

inhibitors. He also said that everyone can slowly develop a resistance to

the drugs and sometimes you have to switch back and forth between two of

them.

I'm curious as to why your doc cut your MTX. My docs would rather have me

off of Pred instead of cutting MTX down. Especially if on one of the above

mentioned drugs.

Take care - hang in there.

On Sat, Nov 1, 2008 at 4:47 PM, Joan UK wrote:

> Hi Ellen

>

> To be quite honest, I am not too sure how I am at the moment. I started on

> Humira 12 weeks ago and the first injection I had an ulcerated throat but

> the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

> I had so much more energy and really couldn't believe I was almost my old

> self, but after that my joints were a bit better but for some reason my

> muscles have really been aching. My Rheumy cut my Methetraxate by half

> because he thought it was too strong with the Humira maybe that's the

> reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

> can talk to as I feel the medication is not quite right at the moment very

> hit and miss.

>

> It is good that you can make small adjustments to your medication yourself.

> I am very sensible with regards to medication but inbetween hospital visits

> if I think I need help with dosage I have to go to my Doctor but the silly

> thing is that she always tries to put my prednisilone up much higher than I

> want . It would be so much easier if I could just ring the hospital for

> their advice - but that's the system unfortunately.

>

> I am going to hot foot it - sorry didn't mean to draw your attention to

> them again and watch some TV

>

> Hope your pain has eased with the higher dose of steroids.

>

> All the best

>

>

>

[Guest guest]

Hi Joan,

I am on Kineret and It worked, for a while. Its not working great anymore.

I found I had to take MTX with it. MY doc is waiting for Toc(however it is

spelled - I just woke up again with a roaring headache and fever) to come

out. He wants to put me on that one.

I do remember my other doc and the one here saying that basically Kineret

and the IL6 blocker (Toc...) are both better for stills than the TNF ones

(Humari, Enbrl, Remicade) in general, but that it always depends on the

Person... Ha.. dosen't that help. So in general He would choose the Two top

ones over the TNF blockers, but if they don't work, he would try the TNF

inhibitors. He also said that everyone can slowly develop a resistance to

the drugs and sometimes you have to switch back and forth between two of

them.

I'm curious as to why your doc cut your MTX. My docs would rather have me

off of Pred instead of cutting MTX down. Especially if on one of the above

mentioned drugs.

Take care - hang in there.

On Sat, Nov 1, 2008 at 4:47 PM, Joan UK wrote:

> Hi Ellen

>

> To be quite honest, I am not too sure how I am at the moment. I started on

> Humira 12 weeks ago and the first injection I had an ulcerated throat but

> the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

> I had so much more energy and really couldn't believe I was almost my old

> self, but after that my joints were a bit better but for some reason my

> muscles have really been aching. My Rheumy cut my Methetraxate by half

> because he thought it was too strong with the Humira maybe that's the

> reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

> can talk to as I feel the medication is not quite right at the moment very

> hit and miss.

>

> It is good that you can make small adjustments to your medication yourself.

> I am very sensible with regards to medication but inbetween hospital visits

> if I think I need help with dosage I have to go to my Doctor but the silly

> thing is that she always tries to put my prednisilone up much higher than I

> want . It would be so much easier if I could just ring the hospital for

> their advice - but that's the system unfortunately.

>

> I am going to hot foot it - sorry didn't mean to draw your attention to

> them again and watch some TV

>

> Hope your pain has eased with the higher dose of steroids.

>

> All the best

>

>

>

[Guest guest]

Hi Joan,

I am on Kineret and It worked, for a while. Its not working great anymore.

I found I had to take MTX with it. MY doc is waiting for Toc(however it is

spelled - I just woke up again with a roaring headache and fever) to come

out. He wants to put me on that one.

I do remember my other doc and the one here saying that basically Kineret

and the IL6 blocker (Toc...) are both better for stills than the TNF ones

(Humari, Enbrl, Remicade) in general, but that it always depends on the

Person... Ha.. dosen't that help. So in general He would choose the Two top

ones over the TNF blockers, but if they don't work, he would try the TNF

inhibitors. He also said that everyone can slowly develop a resistance to

the drugs and sometimes you have to switch back and forth between two of

them.

I'm curious as to why your doc cut your MTX. My docs would rather have me

off of Pred instead of cutting MTX down. Especially if on one of the above

mentioned drugs.

Take care - hang in there.

On Sat, Nov 1, 2008 at 4:47 PM, Joan UK wrote:

> Hi Ellen

>

> To be quite honest, I am not too sure how I am at the moment. I started on

> Humira 12 weeks ago and the first injection I had an ulcerated throat but

> the 2nd. One was fine and the 3rd. and then after the 4th. One I felt great

> I had so much more energy and really couldn't believe I was almost my old

> self, but after that my joints were a bit better but for some reason my

> muscles have really been aching. My Rheumy cut my Methetraxate by half

> because he thought it was too strong with the Humira maybe that's the

> reason. Anyway I am seeing the Rheumy on Monday and I hope it one that I

> can talk to as I feel the medication is not quite right at the moment very

> hit and miss.

>

> It is good that you can make small adjustments to your medication yourself.

> I am very sensible with regards to medication but inbetween hospital visits

> if I think I need help with dosage I have to go to my Doctor but the silly

> thing is that she always tries to put my prednisilone up much higher than I

> want . It would be so much easier if I could just ring the hospital for

> their advice - but that's the system unfortunately.

>

> I am going to hot foot it - sorry didn't mean to draw your attention to

> them again and watch some TV

>

> Hope your pain has eased with the higher dose of steroids.

>

> All the best

>

>

>

[Guest guest]

Hello

I am sorry that Kineret has stopped working for you and that Toc. will be

more successful for you. Out of interest, did you have any bad side effects

with Kineret?

My doc cut my MTX because he thought that with the high dose and then taking

the Humira on top it might be causing the ulcerated throat so he halved the

dose It appears to have done the trick as I have now had three more

injections and no ulcers. Also the results of my blood test have shown that

I have gone from a high reading of inflammation to a fairly low reading,

which they are very pleased with, so I am now reducing my pred. the doc.

wants me to get down to 7.5 but I really struggle below 10 - haven't managed

it so far but never say never.

I hope you feel better soon

Take care

Joan U.K.