Hi everyone

[Guest guest]

Hi Pat,

Boy, I wish my doctor would give me the choice of injecting myself with

Enbrel or having his nurse do it. I'd be at the office door first thing in

the morning. I hate the " pokes " . I've been doing it for a year now and it

does not get any easier. But.............a lot of us can do it without a

shudder..... ) I aim for my tummy where I have a bit of a fat roll so I

can grab it. Brrrrrrrrrrrrr...... a shiver up my spine just thinking about

it.

xxoo

Ca. Carmen

[Guest guest]

Lorie and anyone who needs it I will be happy to come for a party. I can

bring my paints and we can paint each others walls with glorious scenery and

it could be a place we could go whenever we feel bad. Big hugs and smiles

to make you happy, Melt

My name is Lorie and I

> have been in a severe flare for about 12 days now and I am slipping

> even farther into a dragons cave. I think a pity party might be in order

for me today.. 8(

> Lorie in Seattle

[Guest guest]

Lorie,

So sorry you are feeling so bad today. Is there anyway you can see the

Rheumy on an emergency visit today or tomorrow? If not hang in there the

best you can. Sometimes sleeping is a blessing

Hope you feel better real soon

Ann K

LI NY

Hi everyone

> Good morning friends,

> I thought that I would hop online for a bit this morning. I am a

> wee bit behind in reading all the posts, so welcome to anyone who is

> new and welcome back to those who came back. My name is Lorie and I

> have been in a severe flare for about 12 days now and I am slipping

> even farther into a dragons cave. All I can do is sleep 18 hrs a

> day. I do this because I have to take a ton of pain meds and

> therefore I sleep. I see the rheumy next Tuesday and hopefully we

> can begin some form of treatment then. I had been taking the

> conservative approach because I was feeling better, but now I see

> that it is still here and hanging on in the body. Somedays I just

> wish that I would die and be done with it. It has to be better then

> this. I think a pity party might be in order for me today.. 8(

>

> I just wanted to say thanks for listening to my whining this morning.

> I hope that everyone else has a beautiful day and pain free.

>

> Lorie in Seattle

>

>

>

[Guest guest]

Count me in, I could use a goos, make that good, party, I will bring my

favorite treat-PINEAPPLE, Thats all I get to eat this weekend, lol. I

have a few walls I will fold up and bring, they need paintin'. No

dancing this time for me but I love to watch and dream, is there a hot

tub close? Party party party...... LOL...Louise.

Melt wrote:

> Lorie and anyone who needs it I will be happy to come for a party. I can

> bring my paints and we can paint each others walls with glorious

> scenery and

> it could be a place we could go whenever we feel bad. Big hugs and smiles

> to make you happy, Melt

>

> My name is Lorie and I

> > have been in a severe flare for about 12 days now and I am slipping

> > even farther into a dragons cave. I think a pity party might be in

> order

> for me today.. 8(

> > Lorie in Seattle

[Guest guest]

If there is a hot tub involved count me in too.

I'll have to bring the cold cuts. I'm on Atkins and can't have most other

treats.

Ann K

LI NY

Re: Hi everyone

> Count me in, I could use a goos, make that good, party, I will bring my

> favorite treat-PINEAPPLE, Thats all I get to eat this weekend, lol. I

> have a few walls I will fold up and bring, they need paintin'. No

> dancing this time for me but I love to watch and dream, is there a hot

> tub close? Party party party...... LOL...Louise.

>

> Melt wrote:

>

> > Lorie and anyone who needs it I will be happy to come for a party. I

can

> > bring my paints and we can paint each others walls with glorious

> > scenery and

> > it could be a place we could go whenever we feel bad. Big hugs and

smiles

> > to make you happy, Melt

> >

> > My name is Lorie and I

> > > have been in a severe flare for about 12 days now and I am slipping

> > > even farther into a dragons cave. I think a pity party might be in

> > order

> > for me today.. 8(

> > > Lorie in Seattle

>

>

>

>

>

[Guest guest]

it is good to hear you talked with your fiancé. Always keep those

lines open helps a lot. Also, remember when you have an emotional time or

upset it often causes the Still's to be worse for a bit. I'm hoping you can

do something happy together and feel better. With good thoughts for you,

till soon, Melt

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

From: " jenniferking3378 "

> I just want to say to everyone who emailed me, posted their opionions

> on here thank you! I take everything that people say to heart and

> think about them. My fiance' is a good man, he just goes about things

> that aren't in such a good light. We talked a lot last night, I

> cried, and he listened and we're fine, I just need him to listen and

> understand what I am going through. We're communicating and that's a

> start.

> Last night I had a fever, and felt really bad, this morning woke up

> and felt ok, but not great, tonight it's bad! Fever, stomach cramps,

> my tummy is not settling down, my liver hurts and my spleen is huge,

> because I can feel it. I am barely making it to the bathroom, and

> feel like I am going to vomit, I really hope it's not a GI virus, I

> had one of those in the beginning of this whole ordeal and it SUCKED.

> AHHH 2 more weeks until the colonoscopy, I can't wait! Seriously I

> have decided to watch them preform the procdure, because if I have

> ulcers on my colon I want to see them, so I can tell people what they

> look like! I think I am going to take another 600mg of ibprofren

> before I go night night, I just ache. My arms were splotchy tonight,

> but I can't tell if it's the infamous rash, my poor skin is sooo

> sensitive......... I can't tell.........

> ANyways, off to bed.

> In a better mood and spirits

> Jen#2

>

>

>

>

[Guest guest]

Hello Pat,

I do hope that you begin to feel better and that the swelling in your feet

and hands go away soon with relief from the Remicade and your other

medications. I find that if I don't put my feet up during the day then they

will swell up especially around the ankles and go upwards.

I too use to be on Remicade perhaps for over a year but like you I found

that it wasn't lasting as long as it should and certainly wasn't lasting

until my next infusion. I use to get my infusion (after the initial loading

dose) every eight weeks but had to switch to every six weeks as it was

lasting the eight. After a while I noticed it would only last four weeks,

so the benefits to my body were getting shorter and shorter so I went to see

my Rheumy and he decided to switch to Enbrel. My last Remicade was last

August and my first Enbrel injection was in December so I have been taking

it for a few months. It does make a difference but not a huge one. When I

spoke to my doctor about it and other drugs he told me how excited he was

about the drug Humira and I think once it's approved in Canada that I will

be switching to that drug.

I do hope things get better for you.

Take care,

Marilyn

mhogg69@...

Canada

Question:

I have lately been having trouble with my feet..they ache alot and

are swollen on the top so I cant wear certain shoes and when I walk

my right foot hurts near the joint of the big toe although it is not

inflamed at all,,they also feel like they are on fire, the balls of

my feet also hurt to walk on..this is new for me although I read in

one of the posts that someone else has had this..the same with my

hands, they ache but are not swollen or inflamed its just a constant

ache..Im due for my remicade on tuesday but it only seems to hold me

for 2-3 weeks(I get it every 4 weeks)but at least It gets me through

a few weeks of work before I feel I have to take a day off..I look

forward to the remicade infusion so I can take a few days off from

work every month except they usually are not pleasant days and then

I have to go back to work but by then I can tolerate work a little

better..I guess what I m asking is it normal(whats normal) to have

the remicade work for only 2-3 weeks then I can tell I need it again?

does this happen with anyone elses meds that you can tell you need

it? Im also on 15 mg IM of the MTX weekly and prednisone daily..not

sure if I should mention to up the mtx or the remicade(I get 5 vials

every 4 weeks)I dont want to increase my prednisone.I take 20 mg day

before my infusion and 20 mg day of it and 2.5 daily. sorry for the

long post, Thanks for all your support

take care

love Pat from MA

_________________________________________________________________

[Guest guest]

Hi Kathy, thanks for replying..do you feel better on it..I guess I

ahtought that when I was on something that worked then all symptoms

go away..maybe thats because thats how it was for me before on just

the mtx..now its not doing it. Its great that it keeps the fever and

chills away , but I wish it took your pain away also

well I know we will all hang in there, but like everyone its time to

get back to really living again with out pain

take care

love Pat

> >

> >

[Guest guest]

Dear Pat, I wish you the best of times. You sure do have it coming. Thank

you for letting us know how you are and please make sure you get your rest

as well as all that fun. I do hope your cough will leave soon. Till soon

with a smile, Melt

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

From: " chocluv20 " <chocluv20@...>

wanted to let you know I will

> be at the Cape rest of this week till Sun night for my daughters

> dance competion(maybe Cyn will be there dancing).

[Guest guest]

Dear ,

Thank you for letting us know what is happening. Sometimes

a medication or even the anesthesia can make a person " not

themselves. " Hopefully things get better for your dad soon, and

you can all breathe easier.

You know what ? This might sound weird, but whenever I

get really stressed, my lower back pains. I don't know why, but

it does. I think maybe everything sort of tightens, and the muscles

in the lower back seem to be where it hits me most...that and

headaches. Praying you can relax this weekend, and you *don't*

go into a flare., and your dad improves more everyday.

((((((((((((())))))))))))))))

Love, tricia

Wisconsin

*****************************************************************************

*

-- Hi everyone

First I want to say thank you to everyone for their wishes and support..

Sorry to hear that Lynn's claim was denied. ((((Sue)))) for being.. Jul's I

do

hope they get you feeling better soon dear and stop that all theat weight

loss..and everyone else, I haven't forgotten you, I promise. My prayers and

thoughts are with everyone..

I have been trying to keep up with my emails, I just haven't been posting.

I

think I spoke a little too soon when I spoke about dad.. I have decided I am

not going to let this weight go off of my chest until he is out of the

hospital... Well the surgery did go fine on Tuesday. Wednesday there was

complications with his lungs and heart. His heart rate was way up there and

his

breathing was really rapid, they had him on 100% oxygen and it still wasn't

helping.

At first they thought possible collapsed lung or pneumonia starting, they

decided to try the NG Tube and got out 3 liters of fluid, don't know where

it came

from, after that he started doing much better.. Stats levelled out.. He has

been very confused!!!!! I felt pretty good last night when I left him..I am

soo

stressed and soo tired.. I went to bed about 10/1030 only to get a call from

the hospital at 230am this morning. Dad was really freaking out and no one

could calm him down.. He is pretty disoriented..I talked to him on the phone

and he got pretty pissed at me because I wouldn't take him out of the D___

place

lol.. so they asked me to please come in, so back I went. Just got home.. I

am at my wits end.. I really haven't been able to cry through any of this, I

think I am trying to stay strong for my mom so she can break down, I don't

know. I do know that no of this is good for me though.. I feel that I am

going

to snap at any minute. I want to thank everyone again for their well wishes

and

prayers.. Hopefully this weekend will be much better for him and me.. We are

going to do grandma's ashes on Monday so hopefully after that I will finally

be able to rest, I am so afraid right now that I am going to go into a flare

again. My lower back is starting to really hurt, and I have never had this

problem before.. Well thanks for listening that helps me some.. Take care

and I

hope everyone has a nice weekend.. Happy 4th.. Love to all Kel

Kelley in Colorado

Kelleyak31@...

[Guest guest]

Thank you Tricia.. I got some much needed sleep today.. It is pretty hot

here, and we are dry heat so that doesn't help much either.. I am not going back

to the hospital today, I am going to take a break from there.. Mom is coming

over and we are going to BBQ some steaks and do my shot, woohoo fun.. lol.. (the

shot part, I could do without) With her here I should be able to cry, and we

will sit and cry together like a couple of babies, guess I should go warn the

neighbors incase there is a flood.. lol.. Hope you have a great 4th weekend.

That is pretty weird about the back, so far I have been able to keep my

headaches pretty much at bay, started to get one last night but it went away

when I

took the vicoden for the knee, ankle and back pain lol.. Love Kel

Kelley in Colorado

Kelleyak31@...

[Guest guest]

(((((((((((((((((((((((((((((((((((((()))))))))))))))))))))))))))))))))

LOVE too!

~~~tricia~~~

Wisconsin

**********************************************************************

-- Hi everyone

Hust wanted to touch base with everyone and say hi..

Well last week I started out with the throat, neck and ear pain and thought

" oh no here we go again " . Went to my PCP's office and he didn't see

anything

and said that it was probably the stills.. he increased the pred up to 20

again

to see if that would help, if it didn't then it is probably a bacterial

infection. Well the increase didn't help, so he put me on an antibiotic on

Friday

night.. Was told by him and the pharmacy that it wouldn't have any affect on

the MTX and to go ahead with my shot..

Starting on Sunday night, I ended up in soo much pain in my legs. Kind of

that numb feeling, pain, tingling, weak.. Unable to stand or walk that much.

Finally called my Rhuemy's office yesterday and talked to his partner. He

stated that the antiobiotic can cause tendon swelling and/or rupture.. and

to stop

taking it..needless to say I am not taking it anymore or again.. Been up

since

230 am in so much pain.. I was doing so well until all of this...... The

vicoden isn't helping with any of the pain, been living in my bathtub lol..

and

soo many headaches now..

Maybe it is just my body, but anyone taking MTX please don't take Levaquin.

I know we are all different, but I wouldn't want any of you to go through

anything like this..

Take care and love you all..

Kelley in Colorado

Kelleyak31@...

[Guest guest]

Thank you Dot... Hope you are having a good day and feeling okay from the

humira shot..love ya

Kelley in Colorado

[Guest guest]

It was great meeting with Lorie and her husband . It is the first time

that we have ever met anyone with this Dragon. and I really enjoyed

sitting over lunch and talking about so many things. We seem to have quite a

bit in common and I am hoping that we will keep in touch for a long time to

come.

I am looking forward to meeting many more people that I read about and " talk " to

on line here.

I do love to travel and feel that it is important that I take every opportunity

to see new things and meet new people. I don't know how long I will be able to

do this (before my body or my money give out), so I will just continue as long

as possible.

If anyone is interested in my travels, I have my scrapbook from my Alaska cruise

with me and about 100 pictures on my laptop that represent the highlights of our

recent trip to Ireland. Just let me know when we are in Vegas and I will gladly

bring them out.

Ann K

[Guest guest]

Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love

to party .. Come one come all.. So what do you say Caroline?? it is pretty

nice here.. hehe

Kelley in Colorado

[Guest guest]

Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love

to party .. Come one come all.. So what do you say Caroline?? it is pretty

nice here.. hehe

Kelley in Colorado

[Guest guest]

Hi Kelley

Thanks for the update. Hope the new medicines do you some good.

Caroline has been looking for a place to have a party tonight. How

about hosting the pitty party at your place??

How about it Caroline? Colorado Springs sounds like a great place to

have the party tonight to me.

Dan

> Sorry I have been so quiet lately.. Have not been up to par

lately..

[Guest guest]

Hi Kelley

Thanks for the update. Hope the new medicines do you some good.

Caroline has been looking for a place to have a party tonight. How

about hosting the pitty party at your place??

How about it Caroline? Colorado Springs sounds like a great place to

have the party tonight to me.

Dan

> Sorry I have been so quiet lately.. Have not been up to par

lately..

[Guest guest]

Kelley- sounds like you are having loads of fun. Hope you get to

feeling better soon. Please inform your doctor (the one doing

research) that I am here in NW New Mexico, and I would love to be a

part of this research thingy, too. I am not a sucker for punishment,

but if it would further the chance of finding a better treatment for

us all (or even some) I would be willing. Anyway, hang on tight to

that sense of humour, and you will kick that dragon right in the head.

Love and hugs....... Traci

> Sorry I have been so quiet lately.. Have not been up to par

lately..

>

> Well I went to Denver yesterday and seen the Dr.. We are going to

start the

> Kineret on an every other day schedule for a month and see how I

do.. woo hoo..

> hehe.. Looking so forward to that.. lol I am keeping a

journal/diary for him

> and will talk to him on the phone every week until I go back to see

him in a

> month. He is going to arrange for me to go to my rhuemy's office

to get my lab

> work done instead of going back up to Denver each week.. On to

other news..

> hehe.. We are doing all of this and we had started on the research

part of it

> all also.. We did a skin biopsy off of my back yesterday too.. He

is going to

> grow the cells and see what grows and test different things.. His

hope is

> that once he can get enough information and testing together he

will be able to

> reach out and test other still's patients and come up with better

info.. and

> more help for all of us.. I know I have to you all before I dont

mind being the

> one to do all of this, and I dont, I am so glad to be part of this

process and

> hope to be able to help all of us here and the ones in the

future.. My

> appointment was 3 1/2 hrs long yesterday.. lol.. Never been at a

dr's that long

> before lol Mom said I am special.. hehe

>

> I have been in a lot of pain the last couple of weeks, that is why

I have't

> been posting much. Hopefully this will change soon.. Got my papers

back,

> finally from my rhuemy, so will see what happens with work.. He did

recommend a

> handicap sticker for work as not having to walk so far..

>

> Okay I am off again.. I love you all.. Where is the party????

Waiting for it

> to get started hehe

>

> Kelley in Colorado

>

>

>

[Guest guest]

HI Everyone..

Ok..I'm feeling really down in the dumps today..it's my 45th birthday and I got

out of the hospital yesterday. My BP went up (200/176)..stayed two days there.

Went back to work today..stress land..I'm not real sure how long I can stand all

this without just yelling..

Thanks I feel much better now that I have let off steam. You all are great to

just listen (read) all of this. The dragon has also hit in a big way, the rash

is really bad today..OH I have it..it's the Red Dragon...LOL..ok the meds have

me a little crazy..but then again I could have been that way for a while.

Love hugs and all that good stuff to you all

Re: Re: Hi everyone

Sounds like a plan to me Dan.. hehe.. Can have the party here anytime .. Love

to party .. Come one come all.. So what do you say Caroline?? it is pretty

nice here.. hehe

Kelley in Colorado

[Guest guest]

from Dale, Mom to Katy, CVID, age 19

Hi, ,

>I told him we haven't seen the immuno since Hunter was diagnosed almost five

years ago.

>

>

You may want to check in with your immuno if you feel good about him,

just to keep that relationship because Hunter is preparing for

adolescence and there may actually be some improvement. So, I would

certainly see an immuno approximately once a year until you get through

puberty. Katy's immuno's want to see her once a year -- but, we only

schedule the visit about once every two years, etc. just because she's

so stable.

>Is there a genetic test to see if we carry the gene for cvid,

>

No. Not yet and as far as I know, no one is even close. They have done

some work with CVID that is definitely familial (showing up in families

through several generations) but nothing on the random cases -- and most

CVID is random.

>and are kids supposed to be retested periodically?

>

You should be getting trough levels (drawing and checking the levels

just before IVIG to see what the absolute lowest numbers are every 6

months. That's because IVIG is very dependent on body size -- so, you

wil need to recheck the troughs and adjust the dosage accordingly and

because the body may increase or decrease it's need of IVIG. If you

regularly check the troughs you should be able to see any improvement in

the body's production of IgG -- according to Dr. Lederman of s

Hopkins. He said that there is no reason to ever trial off someone who

has shown by lab test to be low on IgG - because the trough levels

would reflect any increase. However, many immunologist believe that

trialing off (going off IVIG for 3 months and then rechecking all the

levels -- including vaccinations -- is a better indicator. Katy

started IVIG at age 13 and we've never trialed off and have no intention

of doing so! I say if they are doing really well -- why change it,

and if they are doing really poorly -- you can't risk taking them off!

Dr. Lederman reported on a case where a 20-something young lady

spontaneously began producing higher and higher trough levels with no

change in IVIG -- they took her off IVIG and she continued to improve

all her levels -- so she stopped IVIG altogether and is doing fine!

That's his basis for not trialing off and risking infection.

> IVIG to 10 g. He weighs 58 lbs.

>

>I'm just wondering if we should see the immuno to see if there is anything

different that we should be doing? Any input would be great!

>

, I would certainly want to see the immuno if your new pediatrician

is talking about changing things that you are not comfortable with. The

immuno could support you (or explain why) so that you could be

comforable with his care.

REMEMBER, if you will call IDF national number 1-800-296-4433 and give

them your new doctor's mailing address, they will put him on their

mailing list to help him come up to speed with PID.

Best wishes. I'm glad Hunter is doing so well!

In His service,

Dale

[Guest guest]

Kelley, thank you for writing. You have been on my mind so much lately. I will hold the highest hopes that the drug company will pay to try the Humera. Some here have had good responses with it.

It sounds real nice to be able to stay at a house in the mountains. Just be sure they have forced air for you so you don't get cold if snowed in, lol.

Once again it is good to hear from you and even when we don't your in our hearts.

Smiles for better days, Melt

Hi everyone

First off... Sorry I haven't been around much. I have been up and down. I do think of you all often and read all the emails. I hope Sue2, , , anyone I missed, are doing better and feeling alot better.... good luck with your surgery. You are in my prayers.

I talked to the Dr in Denver yesterday. He has talked to the drug rep, and everything is looking good so far that they will give me the drug for free. They want to be part of this study. He is talking to his "big boss" out of state, so have to wait for him to come back to know when things are going to happen. The new drug they want to try me on is Humera. (sp) So any advise would be helpful lol.. If this works, hopefully I can get off the MTX and my hair will start coming back lol.. I am starting to loose it now that my Rhuemy increased it to the 10cc's... pout pout lol.. Good thing I keep it short. lol.. I see the Rhuemy again, the one here, in December and last time he had talked about tappering the prednisone also...

Again I am sorry I haven't been around much. I dont know if it was coming off the Kineret or not, but I have been in a lot of pain. Got my flu shot last week, now I dont know if I am fighting off something or if it is the Flu shot. uggg lol.. Blasted Dragon.. hehe.. I am going to take a mini break at the end of the month, after thanksgiving. I am going to the mountains to house sit for my aunt and uncle, but will still have access to my email. I think it will be a good get away.... hehe.. Hopefully I wont get snowed in lol.. Love you all and think of you all lots....

Kelley in Colorado

[Guest guest]

Hey Kim...Christmas 2004 you will be asking Santa to bring you a

ton of new Cloths! Yeeee hawwww!

Jo

[Guest guest]

> Hi, my name is Kim (even though the email says megafone - its my

> daughter's) I am having surgery on Dec 10, 2003 with Dr. K

>

> I live in Texas and have UHC insurance that approved me last

Friday

> YIPEE

>

> Anyway just wanted to thank you guys for inviting me to join the

> group and this time next month... I'll be post op tee hee

>

> Kim

Welcome, Kim

Congrats on your surgery date!!! that's fabulous!

Joy

[Guest guest]

Hi Kim! Welcome to our group and congratulations on getting your date! I

look forward to learning more about you. Hugs and blessings, Ann