Re: Systemic rash Pictures (helen)

[Guest guest]

Helen,

I'm so sorry to hear that Nick is not feeling well and having increased pain and fatigue.

I was so hoping the Enbrel would do the trick for him.

I'm glad you were able to go to AJAO and talk to other rheumies to get there opinion and more insight to the other biologicals.

You know has never been on more then .45mg of Enbrel per kilo with the exception of when his weight bottomed out at 47 lbs then started going up again.Now that he's atleast 70lbs he's not even getting quite the starting dose of.4mg per kilo.

I think it's time for something to be uped,past time actualy.His lft wrist still has this so called residual inflimation and pain on full ROM.

I hope when Nick goes back to the rheumy you all can come up with a new game plan and get Nick feeling better.

Love and hugs

Becki and 7 systemic

[Guest guest]

Hi Helen,

How have you been doing these days? I bet your glad to be back home

and in the swing of things again. Has Nick been feeling ok? Thanks

for posting his rash pictures...I always found it helpful to be able to

look and compare Aundrea's rashes to others...Probably because it was

always said that her rash didn't fit the " typical " picture.

Nick has the cutest little feet! Although, Aundrea just turned 10 she

is squeezing into a ladies size 8 ! lol I have a very tall family with

very big feet. Naturally, we are all a bit envious of those cute

perfect little tootsies! :-)

We are doing fine. Getting settled in and making appointments with new

ortho, dentist, rheumy, ped...etc. So far we have been very pleased

with everyone.

I need to work on finding the ped yet and Aundrea is do for some lab

work soon so that is next on my list to get completed.

Hope your having a great day!

(Aundrea 10 systemic)--

- In , " hburger64 " <hburger64@h...> wrote:

> I found some of Nicks early rash pictures that i didnt know i took

> when i was cleaning up some of the 5,000 digital pictures on my

laptop.

>

> I have posted them to the photo album in the systemic rashes folder

> for those how are interested in the rash.

>

> Hugs Helen and (7,systemic)

[Guest guest]

hey ..

I was wondering how you were settling in out there... ive not had much

chance to relax since returning from RI.. i got back on Tuesday, unpacked

and did laundry and then had to pack again for hubby and my 3 oldest boys (

they went fishing in WI for the week) . I then had to pack for Nick and

as they stayed with my SIL while i worked this past weekend. Now im

busy packing again because the men return friday am and we all turn around

and head to the north of MN for our family week vacation. PHEW!!

Nick has tiny feet, hes in a kids 13.... we *might* be able to move up to a

1 hopefully when we go buy school shoes.

Nick is crabby and not feeling good.... i have deicded that his irrational

outbursts tie directly into how hes feeling. I wish he would talk to me more

about what hurts, but he doesnt. we had a long talk last night and I told

him i didnt think the enbrel was working as well as it did in the begining.

It was soo sad to see his face when he looked at me and said he didnt think

it ever worked. Now i know it did in the begining becuase there was such a

marked increase in how well he was doing. But i think slowly over the past

few months as i have been tapering the prednisone, hes had increased pain

and stiffness that hes not always telling me about. I think it gets to a

point where they think this pain etc is just normal and dont remember much

different. He now wakes every morning with stiff and sore hands/fingers. he

refuses to wear his splints as he says they dont work because he still hurts

in the mornings (( ive noticed him flexing his ankles and his hands a LOT

during the day so i know they are all bothering him. His ankles have started

" cracking " everytime he moves them, as do all this fingers and his wrists.

its soo hard to judge how bad he is... for the most part he still functions

well, but hes not wanting to do anything. Hes not been in our pool since we

returned from RI. he just wants to lay around and watch tv, or play computer

or video games. When Nick feels good he LIVES in the pool, hes a fish!

Tomorrow is his regular appt with Dr W. im not sure what we will do, perhaps

nothing, just leave things where they are and hope things get better for

him. hes maxed out on the MTX.. I talked to a couple of doctors at RI about

enbrel dosing and they both said they usually dont go over what dose hes on

right now. I was confused about this as i wondered why his doc has not

increased his enbrel dose as Becki's is on higher doses. But both

doctors seemed to agree with what dose hes currently on. nick has also

started to complain of daily headaches, so i dont know what thats all about

either, perhaps the indomethacin??

Somedays you just get soo fed up with it all....like today.

Sorry this turned into a mega whinefest....

hugs Helen and (7 turning 8 next week! Systemic)

Hugs..Helen

DH Dan

(22)(15)(13)Zachary(10)(7)

(6)

----Original Message Follows----

From: " sonia1md " <sonia1md@...>

Reply-

Subject: Re: Systemic rash Pictures (helen)

Date: Wed, 10 Aug 2005 17:35:48 -0000

Hi Helen,

How have you been doing these days? I bet your glad to be back home

and in the swing of things again. Has Nick been feeling ok? Thanks

for posting his rash pictures...I always found it helpful to be able to

look and compare Aundrea's rashes to others...Probably because it was

always said that her rash didn't fit the " typical " picture.

Nick has the cutest little feet! Although, Aundrea just turned 10 she

is squeezing into a ladies size 8 ! lol I have a very tall family with

very big feet. Naturally, we are all a bit envious of those cute

perfect little tootsies! :-)

We are doing fine. Getting settled in and making appointments with new

ortho, dentist, rheumy, ped...etc. So far we have been very pleased

with everyone.

I need to work on finding the ped yet and Aundrea is do for some lab

work soon so that is next on my list to get completed.

Hope your having a great day!

(Aundrea 10 systemic)--

- In , " hburger64 " <hburger64@h...> wrote:

> I found some of Nicks early rash pictures that i didnt know i took

> when i was cleaning up some of the 5,000 digital pictures on my

laptop.

>

> I have posted them to the photo album in the systemic rashes folder

> for those how are interested in the rash.

>

> Hugs Helen and (7,systemic)

[Guest guest]

Helen, n has always gotten daily headaches when the disease is

more active. (n, 16, systemic)

On Aug 10, 2005, at 11:17 AM, Helen Burger wrote:

> hey ..

>

> I was wondering how you were settling in out there... ive not had much

> chance to relax since returning from RI.. i got back on Tuesday,

> unpacked

> and did laundry and then had to pack again for hubby and my 3

> oldest boys (

> they went fishing in WI for the week) . I then had to pack for Nick

> and

> as they stayed with my SIL while i worked this past weekend.

> Now im

> busy packing again because the men return friday am and we all turn

> around

> and head to the north of MN for our family week vacation. PHEW!!

>

> Nick has tiny feet, hes in a kids 13.... we *might* be able to move

> up to a

> 1 hopefully when we go buy school shoes.

>

> Nick is crabby and not feeling good.... i have deicded that his

> irrational

> outbursts tie directly into how hes feeling. I wish he would talk

> to me more

> about what hurts, but he doesnt. we had a long talk last night and

> I told

> him i didnt think the enbrel was working as well as it did in the

> begining.

> It was soo sad to see his face when he looked at me and said he

> didnt think

> it ever worked. Now i know it did in the begining becuase there was

> such a

> marked increase in how well he was doing. But i think slowly over

> the past

> few months as i have been tapering the prednisone, hes had

> increased pain

> and stiffness that hes not always telling me about. I think it gets

> to a

> point where they think this pain etc is just normal and dont

> remember much

> different. He now wakes every morning with stiff and sore hands/

> fingers. he

> refuses to wear his splints as he says they dont work because he

> still hurts

> in the mornings (( ive noticed him flexing his ankles and his

> hands a LOT

> during the day so i know they are all bothering him. His ankles

> have started

> " cracking " everytime he moves them, as do all this fingers and his

> wrists.

> its soo hard to judge how bad he is... for the most part he still

> functions

> well, but hes not wanting to do anything. Hes not been in our pool

> since we

> returned from RI. he just wants to lay around and watch tv, or play

> computer

> or video games. When Nick feels good he LIVES in the pool, hes a fish!

>

> Tomorrow is his regular appt with Dr W. im not sure what we will

> do, perhaps

> nothing, just leave things where they are and hope things get

> better for

> him. hes maxed out on the MTX.. I talked to a couple of doctors at

> RI about

> enbrel dosing and they both said they usually dont go over what

> dose hes on

> right now. I was confused about this as i wondered why his doc has not

> increased his enbrel dose as Becki's is on higher doses. But

> both

> doctors seemed to agree with what dose hes currently on. nick has also

> started to complain of daily headaches, so i dont know what thats

> all about

> either, perhaps the indomethacin??

>

> Somedays you just get soo fed up with it all....like today.

>

> Sorry this turned into a mega whinefest....

>

> hugs Helen and (7 turning 8 next week! Systemic)

>

>

>

>

> Hugs..Helen

> DH Dan

> (22)(15)(13)Zachary(10)(7)

> (6)

>

>

>

>

> ----Original Message Follows----

> From: " sonia1md " <sonia1md@...>

> Reply-

>

> Subject: Re: Systemic rash Pictures (helen)

> Date: Wed, 10 Aug 2005 17:35:48 -0000

>

> Hi Helen,

>

> How have you been doing these days? I bet your glad to be back home

> and in the swing of things again. Has Nick been feeling ok? Thanks

> for posting his rash pictures...I always found it helpful to be

> able to

> look and compare Aundrea's rashes to others...Probably because it was

> always said that her rash didn't fit the " typical " picture.

>

> Nick has the cutest little feet! Although, Aundrea just turned 10 she

> is squeezing into a ladies size 8 ! lol I have a very tall family

> with

> very big feet. Naturally, we are all a bit envious of those cute

> perfect little tootsies! :-)

>

> We are doing fine. Getting settled in and making appointments with

> new

> ortho, dentist, rheumy, ped...etc. So far we have been very pleased

> with everyone.

>

> I need to work on finding the ped yet and Aundrea is do for some lab

> work soon so that is next on my list to get completed.

>

> Hope your having a great day!

>

> (Aundrea 10 systemic)--

>

>

> - In , " hburger64 " <hburger64@h...> wrote:

>

>> I found some of Nicks early rash pictures that i didnt know i took

>> when i was cleaning up some of the 5,000 digital pictures on my

>>

> laptop.

>

>>

>> I have posted them to the photo album in the systemic rashes folder

>> for those how are interested in the rash.

>>

>> Hugs Helen and (7,systemic)

>>

>

>

>

>

>

[Guest guest]

Hey Helen,

Sometimes when you review the problems and options you just cant help

but have a little whine fest now and them...

I noticed that Aundrea does the same thing when she isn't feeling

well. She will have emotional outburts, tears and such instead of

really verbalizing her pain.

Now when I think about it...If I am having a migraine, cramps etc..I

am more likely to bite someones head off then to gently explain that

mom isn't feeling so well. I guess our kids are no different in

their display of pain! :-)

It's a challenge to know what to do with Nick. You certainly would

like to get him off pred, but I would guess that the next option

would be remicade if the enbrel doesn't work. The hardest part is

realizing that typically this time of the year seems to be the best

time for our kids so it makes you wonder how things will go for him

this fall.

I am keeping him in my prayers along with the rest of our kids (and

Tree of course)

Hope your packing days slow down a little, although the vacation part

sounds fun.

I just got off the phone with making doctor appointments for Aundrea

and myself....Money, money, money...Its weird when they ask about

insurance and I reply we are private pay...I hope God keeps everyone

healthy until we get the practice up and running and can obtain

health insurance again!!!

God Bless,

(Aundrea 10 systemic)---

In , " Helen Burger " <hburger64@h...> wrote:

> hey ..

>

> I was wondering how you were settling in out there... ive not had

much

> chance to relax since returning from RI.. i got back on Tuesday,

unpacked

> and did laundry and then had to pack again for hubby and my 3

oldest boys (

> they went fishing in WI for the week) . I then had to pack for Nick

and

> as they stayed with my SIL while i worked this past weekend.

Now im

> busy packing again because the men return friday am and we all turn

around

> and head to the north of MN for our family week vacation. PHEW!!

>

> Nick has tiny feet, hes in a kids 13.... we *might* be able to move

up to a

> 1 hopefully when we go buy school shoes.

>

> Nick is crabby and not feeling good.... i have deicded that his

irrational

> outbursts tie directly into how hes feeling. I wish he would talk

to me more

> about what hurts, but he doesnt. we had a long talk last night and

I told

> him i didnt think the enbrel was working as well as it did in the

begining.

> It was soo sad to see his face when he looked at me and said he

didnt think

> it ever worked. Now i know it did in the begining becuase there was

such a

> marked increase in how well he was doing. But i think slowly over

the past

> few months as i have been tapering the prednisone, hes had

increased pain

> and stiffness that hes not always telling me about. I think it gets

to a

> point where they think this pain etc is just normal and dont

remember much

> different. He now wakes every morning with stiff and sore

hands/fingers. he

> refuses to wear his splints as he says they dont work because he

still hurts

> in the mornings (( ive noticed him flexing his ankles and his

hands a LOT

> during the day so i know they are all bothering him. His ankles

have started

> " cracking " everytime he moves them, as do all this fingers and his

wrists.

> its soo hard to judge how bad he is... for the most part he still

functions

> well, but hes not wanting to do anything. Hes not been in our pool

since we

> returned from RI. he just wants to lay around and watch tv, or play

computer

> or video games. When Nick feels good he LIVES in the pool, hes a

fish!

>

> Tomorrow is his regular appt with Dr W. im not sure what we will

do, perhaps

> nothing, just leave things where they are and hope things get

better for

> him. hes maxed out on the MTX.. I talked to a couple of doctors at

RI about

> enbrel dosing and they both said they usually dont go over what

dose hes on

> right now. I was confused about this as i wondered why his doc has

not

> increased his enbrel dose as Becki's is on higher doses. But

both

> doctors seemed to agree with what dose hes currently on. nick has

also

> started to complain of daily headaches, so i dont know what thats

all about

> either, perhaps the indomethacin??

>

> Somedays you just get soo fed up with it all....like today.

>

> Sorry this turned into a mega whinefest....

>

> hugs Helen and (7 turning 8 next week! Systemic)

>

>

>

>

> Hugs..Helen

> DH Dan

> (22)(15)(13)Zachary(10)(7)

> (6)

>

>

>

>

> ----Original Message Follows----

> From: " sonia1md " <sonia1md@y...>

> Reply-

>

> Subject: Re: Systemic rash Pictures (helen)

> Date: Wed, 10 Aug 2005 17:35:48 -0000

>

> Hi Helen,

>

> How have you been doing these days? I bet your glad to be back home

> and in the swing of things again. Has Nick been feeling ok? Thanks

> for posting his rash pictures...I always found it helpful to be

able to

> look and compare Aundrea's rashes to others...Probably because it

was

> always said that her rash didn't fit the " typical " picture.

>

> Nick has the cutest little feet! Although, Aundrea just turned 10

she

> is squeezing into a ladies size 8 ! lol I have a very tall family

with

> very big feet. Naturally, we are all a bit envious of those cute

> perfect little tootsies! :-)

>

> We are doing fine. Getting settled in and making appointments with

new

> ortho, dentist, rheumy, ped...etc. So far we have been very pleased

> with everyone.

>

> I need to work on finding the ped yet and Aundrea is do for some lab

> work soon so that is next on my list to get completed.

>

> Hope your having a great day!

>

> (Aundrea 10 systemic)--

>

>

> - In , " hburger64 " <hburger64@h...> wrote:

> > I found some of Nicks early rash pictures that i didnt know i

took

> > when i was cleaning up some of the 5,000 digital pictures on my

> laptop.

> >

> > I have posted them to the photo album in the systemic rashes

folder

> > for those how are interested in the rash.

> >

> > Hugs Helen and (7,systemic)

[Guest guest]

-Hi Becki...

I could have sworn was on .8 per kilo... i was wrong. Dont

know where i got that idea from LOL!!!

I just weighed Nick tonight and hes down to 44 lbs, at his June 2nd

appt he was 47 or 48lbs, im hoping its just a scale discrepancy. his

doctors office called today and I thought they were cancelling his

appt but they were maing sure he would be there... they dont usually

do this. Im just glad they were not cancelling as I really want to

talk to her about whats going on.

has his last study visit in Sept right?? this doesnt mean they

will stop the enbrel does it???? IM not sure how all these studies

work.

Hope you are enjoying the rest of the summer, when do your kids go

back....

hugs Helen and (7,systemic)

-- In , Arthurnator@w... wrote:

> Helen,

> I'm so sorry to hear that Nick is not feeling well and having

increased pain

> and fatigue.

> I was so hoping the Enbrel would do the trick for him.

> I'm glad you were able to go to AJAO and talk to other rheumies to

get there

> opinion and more insight to the other biologicals.

> You know has never been on more then .45mg of Enbrel per

kilo with the

> exception of when his weight bottomed out at 47 lbs then started

going up

> again.Now that he's atleast 70lbs he's not even getting quite the

starting dose

> of.4mg per kilo.

> I think it's time for something to be uped,past time actualy.His

lft wrist

> still has this so called residual inflimation and pain on full ROM.

> I hope when Nick goes back to the rheumy you all can come up with

a new game

> plan and get Nick feeling better.

> Love and hugs

> Becki and 7 systemic

[Guest guest]

-,

thats rigth I had forgotten about Mariums headaches, thanks for

reminding me...

hugs Helen and (7,systemic)

-- In , Price <bc.price@c...> wrote:

> Helen, n has always gotten daily headaches when the disease

is

> more active. (n, 16, systemic)

> On Aug 10, 2005, at 11:17 AM, Helen Burger wrote:

>

> > hey ..

> >

> > I was wondering how you were settling in out there... ive not

had much

> > chance to relax since returning from RI.. i got back on

Tuesday,

> > unpacked

> > and did laundry and then had to pack again for hubby and my 3

> > oldest boys (

> > they went fishing in WI for the week) . I then had to pack for

Nick

> > and

> > as they stayed with my SIL while i worked this past

weekend.

> > Now im

> > busy packing again because the men return friday am and we all

turn

> > around

> > and head to the north of MN for our family week vacation. PHEW!!

> >

> > Nick has tiny feet, hes in a kids 13.... we *might* be able to

move

> > up to a

> > 1 hopefully when we go buy school shoes.

> >

> > Nick is crabby and not feeling good.... i have deicded that his

> > irrational

> > outbursts tie directly into how hes feeling. I wish he would

talk

> > to me more

> > about what hurts, but he doesnt. we had a long talk last night

and

> > I told

> > him i didnt think the enbrel was working as well as it did in

the

> > begining.

> > It was soo sad to see his face when he looked at me and said he

> > didnt think

> > it ever worked. Now i know it did in the begining becuase there

was

> > such a

> > marked increase in how well he was doing. But i think slowly

over

> > the past

> > few months as i have been tapering the prednisone, hes had

> > increased pain

> > and stiffness that hes not always telling me about. I think it

gets

> > to a

> > point where they think this pain etc is just normal and dont

> > remember much

> > different. He now wakes every morning with stiff and sore hands/

> > fingers. he

> > refuses to wear his splints as he says they dont work because

he

> > still hurts

> > in the mornings (( ive noticed him flexing his ankles and his

> > hands a LOT

> > during the day so i know they are all bothering him. His ankles

> > have started

> > " cracking " everytime he moves them, as do all this fingers and

his

> > wrists.

> > its soo hard to judge how bad he is... for the most part he

still

> > functions

> > well, but hes not wanting to do anything. Hes not been in our

pool

> > since we

> > returned from RI. he just wants to lay around and watch tv, or

play

> > computer

> > or video games. When Nick feels good he LIVES in the pool, hes a

fish!

> >

> > Tomorrow is his regular appt with Dr W. im not sure what we

will

> > do, perhaps

> > nothing, just leave things where they are and hope things get

> > better for

> > him. hes maxed out on the MTX.. I talked to a couple of doctors

at

> > RI about

> > enbrel dosing and they both said they usually dont go over what

> > dose hes on

> > right now. I was confused about this as i wondered why his doc

has not

> > increased his enbrel dose as Becki's is on higher doses.

But

> > both

> > doctors seemed to agree with what dose hes currently on. nick

has also

> > started to complain of daily headaches, so i dont know what

thats

> > all about

> > either, perhaps the indomethacin??

> >

> > Somedays you just get soo fed up with it all....like today.

> >

> > Sorry this turned into a mega whinefest....

> >

> > hugs Helen and (7 turning 8 next week! Systemic)

> >

> >

> >

> >

> > Hugs..Helen

> > DH Dan

> > (22)(15)(13)Zachary(10)(7)

> > (6)

> >

> >

> >

> >

> > ----Original Message Follows----

> > From: " sonia1md " <sonia1md@y...>

> > Reply-

> >

> > Subject: Re: Systemic rash Pictures (helen)

> > Date: Wed, 10 Aug 2005 17:35:48 -0000

> >

> > Hi Helen,

> >

> > How have you been doing these days? I bet your glad to be back

home

> > and in the swing of things again. Has Nick been feeling ok?

Thanks

> > for posting his rash pictures...I always found it helpful to be

> > able to

> > look and compare Aundrea's rashes to others...Probably because

it was

> > always said that her rash didn't fit the " typical " picture.

> >

> > Nick has the cutest little feet! Although, Aundrea just turned

10 she

> > is squeezing into a ladies size 8 ! lol I have a very tall

family

> > with

> > very big feet. Naturally, we are all a bit envious of those cute

> > perfect little tootsies! :-)

> >

> > We are doing fine. Getting settled in and making appointments

with

> > new

> > ortho, dentist, rheumy, ped...etc. So far we have been very

pleased

> > with everyone.

> >

> > I need to work on finding the ped yet and Aundrea is do for some

lab

> > work soon so that is next on my list to get completed.

> >

> > Hope your having a great day!

> >

> > (Aundrea 10 systemic)--

> >

> >

> > - In , " hburger64 " <hburger64@h...>

wrote:

> >

> >> I found some of Nicks early rash pictures that i didnt know i

took

> >> when i was cleaning up some of the 5,000 digital pictures on my

> >>

> > laptop.

> >

> >>

> >> I have posted them to the photo album in the systemic rashes

folder

> >> for those how are interested in the rash.

> >>

> >> Hugs Helen and (7,systemic)

> >>

> >

> >

> >

> >

> >

[Guest guest]

-..

Nick flared this time last year too...I remember his doc calling

with his labs and telling me not to be suprised if he started to

have problems as his sed and CRP were high. I didnt believe her as

he was doing really good at the time. Wouldnt you know it, within a

week he was having problems. She jinxed it!!

hugs Helen and (7,systemic)

-- In , " sonia1md " <sonia1md@y...> wrote:

> Hey Helen,

>

> Sometimes when you review the problems and options you just cant

help

> but have a little whine fest now and them...

>

> I noticed that Aundrea does the same thing when she isn't feeling

> well. She will have emotional outburts, tears and such instead of

> really verbalizing her pain.

>

> Now when I think about it...If I am having a migraine, cramps

etc..I

> am more likely to bite someones head off then to gently explain

that

> mom isn't feeling so well. I guess our kids are no different in

> their display of pain! :-)

>

> It's a challenge to know what to do with Nick. You certainly

would

> like to get him off pred, but I would guess that the next option

> would be remicade if the enbrel doesn't work. The hardest part is

> realizing that typically this time of the year seems to be the

best

> time for our kids so it makes you wonder how things will go for

him

> this fall.

>

> I am keeping him in my prayers along with the rest of our kids

(and

> Tree of course)

>

> Hope your packing days slow down a little, although the vacation

part

> sounds fun.

>

> I just got off the phone with making doctor appointments for

Aundrea

> and myself....Money, money, money...Its weird when they ask about

> insurance and I reply we are private pay...I hope God keeps

everyone

> healthy until we get the practice up and running and can obtain

> health insurance again!!!

>

> God Bless,

> (Aundrea 10 systemic)---

>

> In , " Helen Burger " <hburger64@h...>

wrote:

> > hey ..

> >

> > I was wondering how you were settling in out there... ive not

had

> much

> > chance to relax since returning from RI.. i got back on Tuesday,

> unpacked

> > and did laundry and then had to pack again for hubby and my 3

> oldest boys (

> > they went fishing in WI for the week) . I then had to pack for

Nick

> and

> > as they stayed with my SIL while i worked this past

weekend.

> Now im

> > busy packing again because the men return friday am and we all

turn

> around

> > and head to the north of MN for our family week vacation. PHEW!!

> >

> > Nick has tiny feet, hes in a kids 13.... we *might* be able to

move

> up to a

> > 1 hopefully when we go buy school shoes.

> >

> > Nick is crabby and not feeling good.... i have deicded that his

> irrational

> > outbursts tie directly into how hes feeling. I wish he would

talk

> to me more

> > about what hurts, but he doesnt. we had a long talk last night

and

> I told

> > him i didnt think the enbrel was working as well as it did in

the

> begining.

> > It was soo sad to see his face when he looked at me and said he

> didnt think

> > it ever worked. Now i know it did in the begining becuase there

was

> such a

> > marked increase in how well he was doing. But i think slowly

over

> the past

> > few months as i have been tapering the prednisone, hes had

> increased pain

> > and stiffness that hes not always telling me about. I think it

gets

> to a

> > point where they think this pain etc is just normal and dont

> remember much

> > different. He now wakes every morning with stiff and sore

> hands/fingers. he

> > refuses to wear his splints as he says they dont work because he

> still hurts

> > in the mornings (( ive noticed him flexing his ankles and his

> hands a LOT

> > during the day so i know they are all bothering him. His ankles

> have started

> > " cracking " everytime he moves them, as do all this fingers and

his

> wrists.

> > its soo hard to judge how bad he is... for the most part he

still

> functions

> > well, but hes not wanting to do anything. Hes not been in our

pool

> since we

> > returned from RI. he just wants to lay around and watch tv, or

play

> computer

> > or video games. When Nick feels good he LIVES in the pool, hes a

> fish!

> >

> > Tomorrow is his regular appt with Dr W. im not sure what we will

> do, perhaps

> > nothing, just leave things where they are and hope things get

> better for

> > him. hes maxed out on the MTX.. I talked to a couple of doctors

at

> RI about

> > enbrel dosing and they both said they usually dont go over what

> dose hes on

> > right now. I was confused about this as i wondered why his doc

has

> not

> > increased his enbrel dose as Becki's is on higher doses.

But

> both

> > doctors seemed to agree with what dose hes currently on. nick

has

> also

> > started to complain of daily headaches, so i dont know what

thats

> all about

> > either, perhaps the indomethacin??

> >

> > Somedays you just get soo fed up with it all....like today.

> >

> > Sorry this turned into a mega whinefest....

> >

> > hugs Helen and (7 turning 8 next week! Systemic)

> >

> >

> >

> >

> > Hugs..Helen

> > DH Dan

> > (22)(15)(13)Zachary(10)(7)

> > (6)

> >

> >

> >

> >

> > ----Original Message Follows----

> > From: " sonia1md " <sonia1md@y...>

> > Reply-

> >

> > Subject: Re: Systemic rash Pictures (helen)

> > Date: Wed, 10 Aug 2005 17:35:48 -0000

> >

> > Hi Helen,

> >

> > How have you been doing these days? I bet your glad to be back

home

> > and in the swing of things again. Has Nick been feeling ok?

Thanks

> > for posting his rash pictures...I always found it helpful to be

> able to

> > look and compare Aundrea's rashes to others...Probably because

it

> was

> > always said that her rash didn't fit the " typical " picture.

> >

> > Nick has the cutest little feet! Although, Aundrea just turned

10

> she

> > is squeezing into a ladies size 8 ! lol I have a very tall

family

> with

> > very big feet. Naturally, we are all a bit envious of those cute

> > perfect little tootsies! :-)

> >

> > We are doing fine. Getting settled in and making appointments

with

> new

> > ortho, dentist, rheumy, ped...etc. So far we have been very

pleased

> > with everyone.

> >

> > I need to work on finding the ped yet and Aundrea is do for some

lab

> > work soon so that is next on my list to get completed.

> >

> > Hope your having a great day!

> >

> > (Aundrea 10 systemic)--

> >

> >

> > - In , " hburger64 " <hburger64@h...>

wrote:

> > > I found some of Nicks early rash pictures that i didnt know i

> took

> > > when i was cleaning up some of the 5,000 digital pictures on

my

> > laptop.

> > >

> > > I have posted them to the photo album in the systemic rashes

> folder

> > > for those how are interested in the rash.

> > >

> > > Hugs Helen and (7,systemic)

[Guest guest]

Helen,

I hope you and Nick have a very productive rheumy apointment today and things go your way.

You probably got the .8mg because I have refered to a small study that showed that .8mg is the max dose and is apropriate if it works but if not the side effects outweigh the benefits.

does have his last study visit on the 29th of this month.It's a phase 4 safety study so they can't take his Enbrel away.Actualy after his first visit we didn't have to go back and he still would have gotten it.

Today is the first day back to school.'s teacher seems realy nice,now we shall see how well she can deal with his hyperness and inattentiveness.

His poor sister got a barbie for a teacher last year and this yr a kid right out of college.

I sure hope your scales were wrong and Nick hasn't lost that much weight.Weight loss with systemics usualy means something bad is brewing.

My fingers and toes will be crossed for Nick today.

Love and hugs

Becki and 7 systemic