hi all

June 15, 2002

HI Kathi in OK, I am here ....just quiet......and having a few headaches

...got one this morning and my rt side of my neck has been trying to get stiff

(a real pain in the neck...LOL). I also went to my 2nd infusion of

Remicade(or not)in the trial I am in.....I think I am only getting either 3%

or placebo...as all I seem to do is sleep for a few hours after I get

home....can' t really say I feel any worse or better , so if this is so it

will be my infusion in Sept when I can really tell.

Hope things are going well for you in OK. It has been 110 here last few

days.....this can be compared to all you people back east like having -20 or

so weather (I grew up in NY state )Actually anything much over 105 is where I

feel the difference. I am staying in today and just trying to get rid of my

headache....

Well, Kathi , I hope the MTX and predisone work well for you. I have been on

MTX for 6 yrs now and my only complaints are thinning hair on top, and

occassional mouth sores...make sure you get some folic acid to take every day

but MTX day.....Now as for the predisone.....it is a very good drug for it's

purpose ...and I do undrstand the why of it.....just be careful and dont stop

it or self adjust it ok?

I hope all is well in the great dry dusty state of OK.(My image in my mind is

dust, mmiles of oil derricks, and dust ...and Tx seemed to run right into it

all and there was no difference at that point either). Take care and less

pain...Judy in AZ

June 15, 2002

Hi all,and hello to all the newbies:

Debs sorry you are having such a hard time right now....we will all

understand if you keep your cabana boys to your self for awhile

Lynn: Hurrah I am so glad you stress is partially over...I am still

waiting on my letter I guess things go slower in southern Oklahoma

Sorry I have been so bad about posting but it has been a not so good

week. Rheumy on Wednesday pulmonologist on Thursday.

Apparently the scleroderma is attacking lungs and at 44 only have

about 80% lung capacity which sounds OK to me but not the doctor

people.

So after 3 years of plaquenil they have decided I can not wait any

longer for Enbrel and I get to have methotrexate and prednisone added

to the other wonderful chemicals I consume daily.

Before I could start had to have a TB tine and had an allergic

reaction to the test...fun ...fun...it never stops

I have a question for all you knowledgable people...has anyone had the

rheumatoid nodules show up on the joints of their toes?

I have them above all my knucles but now they are showing up on the

big joint below my toes? At first they thought the ones on my hands

were calcium deposits from the scleroderma but they are not they are

rheumatoid nodules ... I have looked all over the net and all I find

is that gout would cause feet nodules, but I have never had gout

suggested...anyway if anyone has any input it would be greatly

appreciated....

a : As always thanks for the great links, they are very

informative and greatly appreciated the more you know the easier it is

to understand

Carol: I hope things are going beter

Kathy in IL: How is your rash...I hope you are feeling better

: Where are you? We miss you

Judy In AZ: I hope you are OK havent seen you post

And : Has anyone heard anything from Tess?

Sorry this is so long...Okie hugs to ya all...Kathi in OK

June 15, 2002

my rash is still on my arms and by my ears. not as itchy anymore. i only

slept about 4 hours last night. so i am really draggin today and running a

fever. i go for an ultrasound on my ankles monday, tuesday i have evaluation

for water therapy, wed. water therapy, thursday counseling. i am just gonna

hang out and rest while i can!!! kathy in il

June 15, 2002

Kathi,

I have rheumatoid nodules under my toes and on the tendon joints of my hands,

which cause my fingers to trigger. Anyone have this too? I also have a lot of

muscle loss in my hands. Anyone experience this too? So, yes it is common

for the nodules and a lot of people get them on their elbows too. I do not.

Hope this helps.

Roxanne

June 15, 2002

Roxanne,

I think muscle loss is quite common. For a while, before I was being

treated for my arthritis, I was fast losing the ability to use my hands. It

is really quite frightening. Now that the pain is under control, I am doing

all that I can to exercise and strengthen my joints, hands, legs, arms,

shoulders, etc.

Suzanne

Re: [ ] RE: Hi all

> Kathi,

>

> I have rheumatoid nodules under my toes and on the tendon joints of my

hands,

> which cause my fingers to trigger. Anyone have this too? I also have a lot

of

> muscle loss in my hands. Anyone experience this too? So, yes it is common

> for the nodules and a lot of people get them on their elbows too. I do

not.

>

> Hope this helps.

>

> Roxanne

June 16, 2002

Judy in AZ: Sorry you are having headaches....do you

have something that helps? You are right about the

dust and derricks but without them in wouldnt be

Oklahoma

it has been hot here also 99 not that it could ever

compare to that Arizona sun...they did give me the

folic acid also...and said to consider cutting and

tying the ole tubes...I tried to tell him I practice

the ole selfa control but he wasnt buying....hope your

headaches get better...hugs

Tess: I am so glad to see you post I have thought of

you this week and wondered how you were....you are in

my prayers

Roxanne: thank you for your reply I really appreciated

it....

Kathy in Ill: That rash sounds like a stickler...isnt

the cream helping at all? I am sorry you are still

going through it.....

hugs to all...Kathi in OK

>

__________________________________________________

July 1, 2002

Kathi,

I¹ve researched all night and I can¹t find any connection between mtx and

poor spelling.

Maybe super sleuth has something up her sleeve <g>

So nice to hear that your meds are helping! yippee!

Are you still having trouble with ? My mail seems to be ok.

a

> Hi all: wanted to send a short one, but they never end up that way..

> into third week of MTX and prednisone....feeeeeel great..better than I

> have in 5 years...my skin is actually real people color ..I am not a

> purple people eater anymore....the bowel problem seems to resolve 3

> days into the MTX,,,,I am praying it is the MTX and not the pred as it

> was suggested that a daily low dose steroid might become a must....but

> I feel really good..giving my husband He##...and really havent been to

> witchy...although my brothers used to say I had an even disposition

> ugly all the time...

> Kathy in IL: I feel bad you are still having such a hard time....sure

> you dont want a vacation in vacation heaven...Oklahoma that is..LOL

> everyone here at the group gets us confused maybe in person we could

> have some fun with it....anyway ((((((((hugs((((( from the wind state

>

> :Welcome to the group they are the greatest bunch...as I am sure

> you will find out..I am sorry about your mom..My mother doesnt want

> her children to know when she is sick either....goes back to the

> mothers take care of their children no visa versa... and

> as idea about getting her to join the group would be great..or if

> you can find a local support group to take her to she can see,meet and

> talk to people her age and maybe make a friend in her area,,,,it

> worked for my sisterinlaw whose on denial...just a thought,,

>

> June: Glad I made you laugh...but what did I do?

> Tess:Hope you are feeling a little better and I have something I want

> to send to you..if I may

> Judy in AZ: Are you baked yet>

> Debs in FL:Is everything OK I havent been seeing you,,,although over

> half my messages arent showing up...figured you might be busy with the

> C-BOYS you lucky devil...

> and a: as always Yhanks to both of you for doing what you do

> PS...Am I allowed to use the MTX as an excuse for terrible

> spelling....is there any research on this...lol

> Big Okie hugs to all...KATHI IN ok

>

July 1, 2002

Hi Kathy! I'm so glad the meds are helping. It's encouraging to me cause I

start MTX this weekend. I see my doctor tomorrow. Still scared, but I know

it's what's best for me. I think I'm over the hurtle of the prednisone

induced agitation. Actually, I think i was in a flare and that was causing

the increased agitation. I didn't expect to still have flares. The

difference was it wasn't as bad as it would have been without the pred.

Debbie Mc

-- [ ] Hi all

Hi all: wanted to send a short one, but they never end up that way..

into third week of MTX and prednisone....feeeeeel great..better than I

have in 5 years...my skin is actually real people color ..I am not a

purple people eater anymore....the bowel problem seems to resolve 3

days into the MTX,,,,I am praying it is the MTX and not the pred as it

was suggested that a daily low dose steroid might become a must....but

I feel really good..giving my husband He##...and really havent been to

witchy...although my brothers used to say I had an even disposition

ugly all the time...

Kathy in IL: I feel bad you are still having such a hard time....sure

you dont want a vacation in vacation heaven...Oklahoma that is..LOL

everyone here at the group gets us confused maybe in person we could

have some fun with it....anyway ((((((((hugs((((( from the wind state

:Welcome to the group they are the greatest bunch...as I am sure

you will find out..I am sorry about your mom..My mother doesnt want

her children to know when she is sick either....goes back to the

mothers take care of their children no visa versa... and

as idea about getting her to join the group would be great..or if

you can find a local support group to take her to she can see,meet and

talk to people her age and maybe make a friend in her area,,,,it

worked for my sisterinlaw whose on denial...just a thought,,

June: Glad I made you laugh...but what did I do?

Tess:Hope you are feeling a little better and I have something I want

to send to you..if I may

Judy in AZ: Are you baked yet>

Debs in FL:Is everything OK I havent been seeing you,,,although over

half my messages arent showing up...figured you might be busy with the

C-BOYS you lucky devil...

and a: as always Yhanks to both of you for doing what you do

PS...Am I allowed to use the MTX as an excuse for terrible

spelling....is there any research on this...lol

Big Okie hugs to all...KATHI IN ok

July 1, 2002

Debbie MC: Good Luck.....I will keep my fingers crossed for you

a: Sorry you stayed up all night..LOL

I think is ignoring our Tom foolery....? Are you there?

Kathy in IL: Kathy ....I have an idea????? My daughter has been

really depressed also...she refuses to take an antidepressants...soooo

I had this thought ..have you ever considered hypnosis? I heard a lady

talking about it the other day , so I called around ,,,sounded

interesting to me..anyway we are going ...daughter and I ...if nothing

else it sounded interesting and is not that expensive...they also do

it for pain management..just a thought ..you sound so down....

((((((hugs)))) to all...Kathi in OK

July 1, 2002

In a message dated 7/1/02 10:18:51 AM Central Daylight Time,

iamladybird@... writes:

> Kathy in IL: Kathy ....I have an idea????? My daughter has been

> really depressed also...she refuses to take an antidepressants...soooo

> I had this thought ..have you ever considered hypnosis? I heard a lady

> talking about it the other day , so I called around ,,,sounded

> interesting to me..anyway we are going ...daughter and I ...if nothing

> else it sounded interesting and is not that expensive...they also do

> it for pain management..just a thought ..you sound so down....

sounds interesting!!! i have put a call into my counselor. i'll see if he

knows anything about this. i have never heard of it before. thanks. kathy in

il

July 5, 2002

hey elly it is great to hear some good news!!! i hope you have continued

success. kathy in il

July 11, 2002

Elly,

It¹s so nice to hear that you are doing so well on the sulfasalazine and

celebrex. Finding the right cocktail sure does make a big difference. I

hope it continues to make such a dramatic change in your life and you never

have to go without medical coverage again.

Hugs,

a

> It's been awhile since I've posted, so I wanted to update you on my

> whereabouts. I finally got health insurance after not having it for almost 4

> years, thanks to my " ne'er-do-well " estranged husband!! I have it just for

> my 2 kids and me - he's on his own! (We are, after all, separated and living

> in 2 different households!!) When I went to my new Dr., fresh out of med

> school, she took one look at me and learned that I'd been taking 12+ Advil a

> day and had been experiencing heartburn and indigestion for several weeks.

> She immediately put me on Celebrex and Sulfasalazine and oh my goodness what

> a difference that combo has made in my ability to function daily!! Group

> Health (my insurance carrier) won't cover Celebrex, so after 2 attempts at

> getting a waiver to be covered, she and I have temporarily given up and she

> got a six month supply from her drug rep!! I feel like I've got my life back

> again!! I've been kicking butt selling real estate for the last month and,

> after 2 years of barely being able to get through the day, feel like I have

> a chance at success at this career!! Thanks to Celebrex!! But, no thanks to

> Group Health! Anyone have any suggestions on how I can contact others in the

> Puget Sound region of WA State who need Celebrex and who have Group Health

> Ins. who are being denied Celebrex so we can start a class action lawsuit to

> get coverage for this miracle drug?? I'm lucky because my Doc can get me the

> Celebrex, but I want to do this on behalf of those who aren't so lucky!!

>

> Welcome new members and hello to my fellow " oldtimers " !! More from me later!

>

> Elly

>

July 17, 2002

Hi all:Welcome to the newbies

Debs:glad to see back

Carol: sorry you are having a bad time

Kathy in IL: Maybe this doctor crying is a turn around for you

Sorry I have been so bad about posting..not so good here...hands have

fully contracted and about all I can do is send a joke....had terrible

headaches and thought maybe the MTX....sent me for my 7th MRI this

year and have brand new white matter spots in the brain...so now

doctors are arguing.....scleroderma vs. lupus...which is it...I still

feel relieved everytime they do it that they find a brain.... ...

my rheumy is contacting Dr. Mayes to see if she would be willing to

see me sooner...I think he is sick of band-aiding the

symptoms...although he and my PCP keep reminding me ....(there is no

cure and most treatments dont work)...still waiting to see something

from the MTX..in the meantime they have added more chemicals to the

regime...neurontin at 1000 mg..amd klonopin to go with the ambien to

make me sleep....after reading the posts lately it must be something

in the air...when i started protesting about being on so many meds I

got that disgusted look....at this rate I may open a

pharmacy....anyway hope you all get to feeling a little

better.....Kathi in OK......gotta add this little ditty guess it shows

how disgusted I am....

GUNS VS DOCTORS

- Number of gun owners in the USA: 80,000,000

- Number of accidental gun deaths per year (all age groups):

1,500

- Accidental deaths per gun owner: 0.0000188

- Number of physicians in the USA: 700,000

- Accidental deaths caused by physicians per year: 120,000

- Accidental deaths per physician: 0.171

Statistically, doctors are approximately 9,000 times more

dangerous than gun owners.

Fact: Not everyone has a gun, but sooner or later everyone

has a doctor.

Remind your friends: Guns don't kill people, doctors do.

July 18, 2002

(((((Kathy (in OK))))))

I'm sorry you've been having a bad time of it, too. It must be a summer

thing. It seems an awful lot of us are under the weather right now.

I hope they get to the bottom of your headaches. I will keep you in my

prayers.

Hugs,

Carol

[ ] RE: Hi all