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Hi

The cost must be the problem with remicade and insurance companies especially

since Jen showed it has been approved since Jan-01. Makes me wonder why the

rhuemy and pcp did not know this? Anyway like you said PATIENCE lol. Thanks for

the info.

Don't Sweat The Small Stuff !!!!!!!!

rjones202@...

HI,

My insurance took a long time to approve Remicade but finally came through.

I'm sure it was the cost but my Rheumatologist fought for me and I even had

letters drawn up to my State Insurance Commissioner, State Rep. and so on

just in case it was denied. I was denied once but I called my insurance and

told them I needed to try this medication and for some reason, they approved

it. Maybe they were using me as a test person. I sure failed their test....

:o( I stopped taking it after one infusion.

Patience...... :o)

xxoo

Carmen

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That would be terrific! I know that she would really enjoy meeting you.

She's had such a tough time, for such a looooong time. I will get email

address to you. I have a new computer and don't have it on this one.

Take care and enjoy your Sunday.

XO

pscarmen@... wrote: Hi ,

No, I am not very close to Traverse City. Maybe about two to three hours

but my husband and I were thinking of going there last Sunday to visit a

friend. We are down on the Lake Michigan side about a half hour from Grand

Rapids. It's a tiny town called Spring Lake. If we do take a trip up there,

I'll ask for her e-mail address and see if she'd like to meet for lunch or

just to say hi if she's feeling up to it.

Thanks,

Carmen

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Dear Carmen,

My heart is heavy with the news of your sadness and hardship. Most

importantly, I am concerned for your health. If you even remotely feel that

there is a connection between your " wasting away " , and the MGB, there is only

one really informed source . . . Dr. R. Tell him everything, or more

effectively, have your doctor and Dr. R speak together, maybe even on a 3-way

line so you could hear also. But speak with Dr. R. Who else has the wealth

of information on so many folks? Somehow, you've got to get to where you can

eat and regain your physical strength. You will be in my heart. PhillyJude

MGB 11-3-00

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Hi ,

The docs said my knees are Arthritis but not Rheumatoid Arthritis.

Apparently, I can have knee replacements when I'm 60 huh! So painkillers were

offered called Dihydrocodeine which appear to be working so far. Mind

regarding a knee replacement, I am the world's biggest coward so when the

time comes we shall see, I've got 16 years to think about it lol.

Let me know how you get on

Must go to bed its 3.20am - I couldn't sleep and my husband is getting up at

4.30am to drive to Cornwall - he is a surveyor and has to survey 15 houses

down there. I stupidly asked him to wake me as I hate him leaving without me

saying goodbye - soppy eh!

Take care, love and hugs

a, Oliver and the clan

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  • 5 months later...

Hey, Carmen! Just wanted you to know that I was glad you were getting the

Enbrel in the mail and that my most positive thoughts are with you that you

will NOT be charged!!!

happy New Year! Love,

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Hi Carmen, I found this site by browsing. When I was first diagnosed, I was so

uncomfortable with the itching I couldn't sleep. I found the site and thought I

signed up then, but I must have done something wrong as I never heard from

anyone. I decided to try again, because I am so stressed out dealing with my

disability insurance agency. They are denying benefits saying I am not ill and

have a desk job anyway-I can work 40 hours a week, blah, blah, blah... I am

still so exhausted I can imagine working right now. I don't have the stamina to

stay awake for long periods, never mind the stress ofthe job. Anyway, I decided

to fight the fight. I think people don't understand the disease, its not

concrete enough, I don't have a broken arm, etc. I'm sure this must be familiar

to a lot of you. Anyway, this seems like a really helpful site, cause I hate

relying on just doc's for info and advise. I need people who have been there or

are who are there. Thanks for the welcome! PS my doc didn't know about

this site-she does now!

Hello ,

Welcome....Welcome.....Welcome

How nice you have found our group. I often wonder how our new members do.

Did your doctor refer you to us or were you just browsing the illnesses on

the net?

My son found this site but I don't know how and he signed me up and I've been

grateful ever since. I've said it once and I'll say it again.......I think

combined, this group knows more than the Rheumatologists. Plus, we're

lovable !!!!! :o)

Do join in our posts and our chats. Our chats are posted one day in advance

so you can choose your day. I seem to be having a hard time getting into a

chat. I go there in what I believe to be the correct time here in California

but I haven't connected with anyone in a very long time. But, I'll keep

trying.

There are some of us that are so knowledgeable that it amazes me,

especially. If she doesn't know an answer, somehow and somewhere she finds

it or comes close to it. Go Jen!!!!!!!!!!

I am taking Enbrel now....it's been a year and I hope it's doing me good.

I'm also taking Prednisone and MTX so I don't know if the Enbrel is the big

help or if it's just along for the ride. Well, at least it is supposed to

inhibit some progression of this disease. You should make sure your doctor

attacks this disease VERY aggressively as the beginning stages are the most

dangerous.

Yes, the hair loss if frightening. I hate brushing my hair now and seeing my

brush full of it. The hair loss seems to come in stages......for no reason

at all it begins and then it halts. Who knows??????? :o(

Keep in touch with us and we'll always be here for you.

xxoo

Carmen

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Carmen: I hate to ask, but... what happens when you go below 3.5 mgs of

prednisone? I am on 20 now, the only side effect that I had that I liked went

away at about 40-Mania-it was great fun being high all the time:) I still have

all the rest and the fluid, bloating whatever is actually worse. I can't wait to

be off, but worry that something will prevent it. Thanks for responding !

Hi ,

I don't know if I'd call my chest pain... " chest pain " or maybe heartburn. I

was diagnosed many, many years with Reflux something or another and I'd get

terrible pains....burning feelings also. I asked my Rheumatologist for some

Protonix and I take it once a day now and the pain/burning has gone away.

Some nights it would wake me up it hurt so bad. But, if you feel like it is

definitely " chest pains " , I'd check into it pronto. I had what I call a

bubble inside on my left chest side a couple of weeks ago that hurt like

crazy. I had to sit up and it took about forty-five minutes to go away. I

don't know what that was but I couldn't take a deep breath at all.

I should imagine that stopping Prednisone will stop the extra hair where you

don't want it........ :o) Are you on a decreasing program? I'm stopped at

3.5mgs and can't get below that.... :o( I don't think MTX has anything

to do with hair growth or loss but I really don't know.

xxoo

Ca. Carmen

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Carmen: I hate to ask, but... what happens when you go below 3.5 mgs of

prednisone? I am on 20 now, the only side effect that I had that I liked went

away at about 40-Mania-it was great fun being high all the time:) I still have

all the rest and the fluid, bloating whatever is actually worse. I can't wait to

be off, but worry that something will prevent it. Thanks for responding !

Hi ,

I don't know if I'd call my chest pain... " chest pain " or maybe heartburn. I

was diagnosed many, many years with Reflux something or another and I'd get

terrible pains....burning feelings also. I asked my Rheumatologist for some

Protonix and I take it once a day now and the pain/burning has gone away.

Some nights it would wake me up it hurt so bad. But, if you feel like it is

definitely " chest pains " , I'd check into it pronto. I had what I call a

bubble inside on my left chest side a couple of weeks ago that hurt like

crazy. I had to sit up and it took about forty-five minutes to go away. I

don't know what that was but I couldn't take a deep breath at all.

I should imagine that stopping Prednisone will stop the extra hair where you

don't want it........ :o) Are you on a decreasing program? I'm stopped at

3.5mgs and can't get below that.... :o( I don't think MTX has anything

to do with hair growth or loss but I really don't know.

xxoo

Ca. Carmen

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  • 3 weeks later...

Oh, no don't say that:)! It's true about the apetite thing, I'm not as hungry

anymore, but the weight doesn't change. Oh well, Baggy clothes, and long

sweaters for now, Hopefully, no mumu's this summer! I've been decreasing at 5mgs

per week, but when I hit 20, we slowed down. I was at 20 for 2 weeks, now I'm at

15 for 3 weeks, then cut by 2.5 every three weeks after that. Exciting but

scarey at the same time. How long have you been on 3.5? I'm starting MTX shots

tomorrow so maybe I'll need the extra weight.Your dog sounds cute,LOL, cuter

than my Fluffy who saves his piddles for the living room rug, but ya have to

luv'em! My dog was a gift from my family when I was in the hospital for Still's,

so he has a really special place in my heart!

Re:

Hi again ,

I'm on 3.5mgs of Prednisone and I haven't lost an ounce. I will say that my

appetite has decreased, though. When I was on 20mgs a day, I could have

eaten a horse for every meal and a burro for snacks.

Maybe it's just me but my weight is not coming off. The only good thing I

can see is that my fat, moon face is not so fat or mooney anymore. The good

Lord probably keeps me on the heavy side so I will keep the roll of fat

around my tummy for my Enbrel shots. :o) How often do you decrease your

dosage?

xxoo

Ca. Carmen

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Dearest Carmen,

thank you friend for your lovely note. The tulips are still surviving, and

I cannot tell you how many times a day that I look at them and think of my

wonderful friends here. I truly do. I never want them to die. I couldn't

believe that they were tulips...absolutely my favorite flower. I hope that

you are well friend. With good thoughts and a huge hug.

Love,Sue #2

-- Re: THANK YOU, THANK YOU!!!!!!!!!!

Hi Sue,

I'm glad you had a pleasant surprise when you walked in the door cursing.

:o) I love tulips also. I think Spring flowers are my favorite. When

they finally go to tulip heaven, why don't you save the bulbs and plant them

next fall (that's when I plant bulbs in Michigan) in a special place so when

they next come up, you will smile each time you look at them and think of us

The Stills, tulip garden...... :o)

I hope your weekend starts getting better.

It's always a downer to find out, i.e., your son not doing well in school,

that you've missed something that you should, maybe, have noticed. I had a

few surprises from my son.......way back in the olden days..... :o).

Things do not seem to change.

xxoo,

Ca. Carmen

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Carmen,

as always friend, thank you so much for your input. It means the world to

me. I will ask about the stomach med that you were on last week. Yes, I

am sick of Tums also.

Love,Sue #2

-- Re: acid reflux, left side pain/muscle injections

Hi Sue #2,

I had a terrible time with acid reflux and ate tums almost every day and I'd

wake up in the middle of the night with pain also and would have to chew one

before I could get back to sleep. I think it was my Rheumatologist here that

gave me a sample of Protonix and it was great. I took the other one that you

mentioned starting with a " P " and it gave me horrible tummy pains Protonix

does not so I imagine it will be trial and error for you. It removed my

tummy pains immediately and my Tums sit in my bathroom drawer now. Ask your

doctor for samples first as I think they are quite expensive if you do not

have insurance. My Michigan Rheumatologist gave me a six month sample

supply.

I don't think the MTX has anything to do with acid reflux but maybe with

head

aches. It seems I have a few more than usual since I started taking it.

Right now, I have a splitting one right up the middle of my forehead........

:o( I've never experienced pain up and down one of my arms or on one side of

my body. I wonder what that could be? Ouch for the impending " poke " he's

going to give you. It must be some kind of a muscle relaxer. I hope it

works for you.

xxoo

Ca. Carmen

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  • 3 months later...
Guest guest

Dear friend Carmen,

So very sorry to hear about the lumps in your breasts.

Hopefully you and your doctor are planning that you be

put " out " during this surgery? My very best friend in all

this world had a lump removed from a breast a few weeks

ago, and she had a choice, to be awake or be " asleep "

during this. She chose to be put " out. " Her husband,

family, and friends (me included) were *very* worried

about her, as her mom had died a few years ago from

Cancer. It was a small lump, and the surgeon removed

the whole lump. It was benign! Everyone breathed a sigh

of relief. Now, Carmen...we here want to hear the word

" benign " from you too (as soon as you know) so that we

can all " breathe a sigh of relief! " You are very special to

all of us, and we love you very much! Besides what would

Jerry do without you to cook all that good food for him.

I am sure he is quite worried also.

Back in 1975 when was born, I had been totally off of the

steroids for just over a year, and they pumped steroids via

I.V. into me. Something about the body could go into shock

even after being free of the steroids after all of that time. It

could have been something to do with possible Adrenal failure

due to extra stress. It's only temporary though, not something

you have to try to reduce again over a period of months. For

me it was 2 days of the steroids by I.V. After my last shoulder

replacement it was only for one day.

If during this two week wait, and after until your meds kick in

again, and you get into some hard to take pain, ask for some-

thing for temporary relief.

(((((((((((((((((((((((Carmen)))))))))))))))))

Your friend, Tricia

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

--

Hi ,

I've been reading about your up coming surgery and I'd like to tell you what

my surgeon told me this afternoon. I went and had a breast lump checked out

and he found another lump in the other breast so he has scheduled me for

surgery in two weeks. Not any sooner as he told me that he wanted the Enbrel

and MTX out of my system.........something to do with not healing as fast if

I were on them. I don't know what meds you are taking but if any of those

are them, I'd confer with your surgeon and see what he has to say. I was

quite surprised when he told me to stop, cold turkey, but as of

today.........no more Enbrel or MTX. The Prednisone is okay and he said he'd

probably I.V. more into me during surgery. I told him I was only taking 1

1/2 mgs, a very small amount and I could probably stop that cold turkey also

but he said that even though it was such a tiny amount, it was 100 times,

plus, more than my own body would produce and it would miss it and act very

sluggish so he wants me to keep taking it. Things you learn........... :o)

I hope your surgery goes perfect and that you are up and about quickly.

Surgery sure can be frightening........ :o(

xxoo

Michigan Carmen

..

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Carmen,

just remember that we are all here for you and will right there with you in

spirit and in mind. We really want you well and with good news. We are

worried about you and love you very much.

Love,Sue #2

-- Thank you

A big thank you to you Patty and also to you Sue#2 for your encouraging

words. It's going to be hard to wait for another two weeks before I can have

the breast surgery. I'll probably have a few sleepless nights thinking of

what's in store for me but I'm a big believer in fate so we'll see..........

Liz, I wish you well for your surgery tomorrow and a speedy recovery.

Patty, now you take care with your " maybe " Hernia and not lift any moving

boxes.

xxoo

Michigan Carmen

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Thank you Carmen, sweet Carmen. My rheumy called me last Friday and said

that the last of the paper work was going in the mail, so hopefully I should

hear from them very soon, or I am going to start losing my temper. I cannot

believe that it has taken so long. I too, like the thing about Humira. I

know someone here in town whom is on it, and she has very good things to say

about it, but my rheumy won't try me on that yet. He says that it is too

new, so we will wait. I am truly hoping that when I get the Enbrel, that I

will feel much better. Carmen, I mean it now...we are all concerned and

really care about you. I know that your anxiety must be high until the

surgery. Just know how much we care and we will be waiting right here for

you friend. Thanks again for just caring so much about me also.

Love, Sue #2

-- Re: MTX /alcohol Sue #2

Hi Sue,

I get so upset when I read your posts about STILL NOT RECEIVING THE ENBREL.

What in the world is going on? It seems like it's been ages since you have

applied. Is it your insurance? Boy! If so, I'd be firing off letter to

them left and right.

I know this girl, who I just found out this weekend, that takes Enbrel but

just now has switched to Humira. I haven't had a chance to speak with her

about why but she did tell my husband that it HURT LIKE H......!!! I'll have

to get the whole story from her and also ask her if she gets any feelings

like Caroline does. I was really considering asking my doctor to switch as I

like the idea of an injection only twice a month but.....not if it hurts

that

bad. I wonder why? I'll bet the company gets a lot of complaints!

But.....when one feels lousy, one grasps for any straw to feel better.

Thank you again for your encouraging words and thinking of me. I just don't

like the long wait until the surgery but he wants me off of the Enbrel and

MTX for a good two weeks before. So far I haven't felt any different but

It's only been four days without any of it....... :o)

I shall say a prayer right now that your Enbrel request is right around the

corner.

xxoo

Michigan Carmen

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I am sorry that your Mother's Day wasn't so good also friend. One of my

employees also had the same thing happen to her. No card, no Happy Mother's

Day, no I love you's or anything. She was deeply hurt and didn't talk to her

hubby for over 24 hours, so I didn't feel bad. My finance still doesn't

understand that I just wanted a card, or an " I love you " ...oh well...Father

s Day is coming and revenge is sweet!!! ha ha

As for my boys, they are 12 and 8 and I must say..the best boys. I love

them with all my heart. Thank you for asking about them.

As for my injections. I am taking 10 pills worth of MTX. I did now the cc

s, but I have forgotten. I have the damn throat sores again. These are

very hard to deal with. I took the injection two nights ago, so today they

started. It also hurt. It never really hurts me, but I really had a hard

time with it the other night. As for splitting the pills..I did the same as

Tricia. I would do some in the morning, noon or night, but I had to give

them up. I was so sick from them. I couldn't go in the car at all. Just

thinking about it made me sick to my stomach. I really had a hard time

eating or doing anything..no matter when I took them. Thank goodness my

rheumy finally switched me over to the injectable form. Much better, but I

am still waiting for the Enbrel. I just want off of the prednisone. I have

been having a lot of teeth pain lately. All sides, up and down...horrible.

They are extremely sensitive to anything. I never had this problem before I

started prednisone. Never... I hate the stuff!! Hope that splitting up

the dose of time helps with the MTX intake friend. Be well Carmen, and

thank you for writing once again and for just caring the way that you do.

Love, Sue #2

-- Re: OT/Mother's Day/ Sue#2

Hi Sue #2,

I can feel your hurt regarding not being acknowledged on Mother's Day. Don't

guys realize that just a card or even a hug means so much?

I wasn't the happiest with my son either. I usually step back and let my son

and family do things with his wife's mother on occasions and holidays. I do

not care for her (wife's mother). She shows blatant favoritism for her

younger daughter and my daughter-in-law tries so hard to be a loving

daughter

but " Jenna " is the daughter that can do no wrong even though she constantly

proves that she can. Anyhow, turns out that my daughter-in-law's mother had

to work Sunday so called and told us that and now they would be

able

to spend the day with me. Yeah......like I don't accept being second

choice........which I did mention to my son. I got one of those " You'll

never be second choice with me " answers which I do believe but it just wasn

t

a happy day for me. They did come over and bring a present but............it

just didn't feel like a " Mother's Day " to me. Maybe I shall start being more

assertive on holidays......i.e. Christmas dinner will be at two

o'clock....Thanksgiving dinner will be at three o'clock....Easter dinner

will

be at noon, etc. etc.

Just a smile or a thank you for being a mother....my mother....would have

worked wonders for you Sue, I think. Right? How old are your two boys? Did

things smooth over with your fiance?

Well, Memorial Day is coming up and I shall tell my family that our meal

will

be served at two o'clock so be there or be square!!!! I'm kind of venting

also, sorry.

I hope your extra dosage of MTX has kicked in for you. What is your dosage?

Does anyone know how to transfer cc's into pill form? I think it was

that said her injections made her nauseous. , Tricia gave me a nice

way to take my MTX and it has really worked. I take 1/3 of the dose in the

morning, 1/3 of it at night and 1/3 the next morning. I have never

experienced any nausea that way but I don't know if you could do that with

injections although I don't know why not. I take 15 mgs which, I think, is a

high dose and I'm doing fine with taking it that way. I used to take

injections and they made me sick as a dog but I was taking them in one fell

swoop. Why don't you speak with your doctor about dividing up the dosage? I

would to avoid the nausea.

xxoo to all

Michigan Carmen

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Just saw your post about the heat....I too will not be able to be outside for

more than 2 minutes at 100 degrees....I am still thinking of a road trip to a

cooler spot..I am at all familiar with the area but I know that people who go

to vegas say there is alot to do out there in many directions?? Well..not

when it is 100 that is for sure.thanks for your postLIZ NJ

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Carmen,

thank you for the support friend. I truly appreciate it. Yes, I think that I hide my stamina under my bed also. There are so many days that I just want to throw in the towel and quit and just sit down and cry, but I am under EXTREME pressure with my dad. He is VERY, VERY ill right now with RA and it is highly aggressive. He might be going in the hospital. I cannot tell you how bad he has it in his wrists. They are four times too big and a doctor that he plays golf with, went nuts went he saw his wrists last week. I am watching my dad wither away at the age of 59 and he is depressed and told my mom that he "doesn't want to live anymore". This is from a man whom built a shopping center on absolutely nothing, works 7 days a week, is a work a holic, loves life, fishing and his golf. Fishing is his passion. His family is number one in his life. I am watching him go down hill so fast Carmen. He is finally going to be starting the injectable MTX at the end of the month and I only hope that it kicks in very, very soon. I cry daily about him and he doesn't know it. I so much cannot work anymore, but must. I have absolutely no choice at all. I am really stuck. I simply cannot let him down or leave him in this serious time. I fear that something drastic is going to happen to him soon. This shrub sale is the worse time for us, but it made us famous around here, and he must continue with the tradition for his customers. I had posted pictures last year on my files folder, but just deleted them recently. Carmen, you would absolutely love the sale. It's that incredible! We are always in the newspaper when we have it. I wish that you could come and see it. As for you YOUNG LADY, you have been in my thoughts, daily and I am still thinking and praying for the best. I know that you must be very nervous. I wish that I could be there to comfort. I think if all of us could be together during these times, we all would. We would go with all of you when one of us is ill or has surgery or anything. We would probably get kicked out of the hospitals when they saw all of us coming in at one time. Well sweetie...just know how much we truly care and you are on our minds a lot this week. Be good to yourself right now. We love you.

Love, Sue #2

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

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Hi Caroline,

When I take a nap in my bedroom, I turn off the ringer on the phone. Sorry........ :o( I still have not heard anything about the biopsy reports. I just called now and the doctor's office has not received anything and the nurse is going to call the lab and see what she can find out. I'm really a nervous nellie about this and wish I would have known right away. Well....no new is good news.....right?

I shall let you all know when I hear something. Boy oh boy, do my boobs ever hurt! More than I thought they would..... :o(

Thanks so much for caring about me.....you certainly are my extended family...... :o)

xxoo

Carmen

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I hope you do get to drop some of your pred, but if not...not to

worry...slow and steady wins the race. I didnt really see too much of a

weight gain to notice any loss from tapering, but I did feel tried whenever

I cut my dosage for the first couple of days. Hope things are well for you,

and thanks for responding

SM

>From: pscarmen@...

>Reply-Stillsdisease

>Stillsdisease

>Subject: Re: Superman Update(to anyone interested)

>Date: Mon, 2 Jun 2003 14:44:31 EDT

>

>Hi Superman,

>Congrats on being drug free! I was just thinking that I am going to ask my

>doctor if I can lower my Prednisone by 1/2 mg. I've been doing that

>monthly

>but had to stop for my surgery. I sure would like to be off of it for

>good!

>Have you noticed that you have lost weight? I have slimmed down a bit.

>Keep on training......Olympics next????? :o)

>xxoo

>Mi. Carmen

_________________________________________________________________

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Guest guest

I hope you do get to drop some of your pred, but if not...not to

worry...slow and steady wins the race. I didnt really see too much of a

weight gain to notice any loss from tapering, but I did feel tried whenever

I cut my dosage for the first couple of days. Hope things are well for you,

and thanks for responding

SM

>From: pscarmen@...

>Reply-Stillsdisease

>Stillsdisease

>Subject: Re: Superman Update(to anyone interested)

>Date: Mon, 2 Jun 2003 14:44:31 EDT

>

>Hi Superman,

>Congrats on being drug free! I was just thinking that I am going to ask my

>doctor if I can lower my Prednisone by 1/2 mg. I've been doing that

>monthly

>but had to stop for my surgery. I sure would like to be off of it for

>good!

>Have you noticed that you have lost weight? I have slimmed down a bit.

>Keep on training......Olympics next????? :o)

>xxoo

>Mi. Carmen

_________________________________________________________________

The new MSN 8: advanced junk mail protection and 2 months FREE*

http://join.msn.com/?page=features/junkmail

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