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Hello my friends,

My girls & I are back from our summer at the beach. My school started today (I went back to college last year....now I'm a 38 yr. old freshmen) The kids start next week...back to the grind.

I did have labs taken on Tuesday & the results were not good.......they went up...actually up alot......back on meds. Very disapointed.....Sad is more like it. I truly thought I would be one of the lucky ones to remain med free. It's kind of drained me....like I've failed some how...crazy I know but you know how the mind works..... My husband is working around the clock & has been for weeks, actually haven't seen him in weeks...wonder if he still looks the same.....so I'm doing it all alone. I told him yesterday the dog is higher than him on the support scale. OK just rambling now......

Wish you all well. Missed you much.

Joan Claffey

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Joan,

So sorry to hear that you are back on meds. Were you completely off and if

so for how long? What was your ALT when you returned to doc, and what kind

and how much drugs were restarted? Is this your first attempt at getting

off drugs completely? I am really interested as I have been gradually

weaned from 30 mg Pred. in Feb. 2004 to 2.5 at this time. I also take 50 mg

Imuran that started when I was on 15 mg Pred., and my dr.'s goal is to get

me off Pred. completely but continue on Imuran maybe for the rest of my life

as I cannot afford a flare up due to significant damage (cirrhosis) to my

liver before AIH was diagnosed. Any information that you can give me is

really appreciated. Thanks.

Pat

>From: " joan claffey " <jclaffey66@...>

>Reply-

>

>Subject: [ ] update.....

>Date: Fri, 03 Sep 2004 16:35:06 -0400

>

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Hello my friends,

My girls & I are back from our summer at the beach. My school started today (I went back to college last year....now I'm a 38 yr. old freshmen) The kids start next week...back to the grind.

I did have labs taken on Tuesday & the results were not good.......they went up...actually up alot......back on meds. Very disapointed.....Sad is more like it. I truly thought I would be one of the lucky ones to remain med free. It's kind of drained me....like I've failed some how...crazy I know but you know how the mind works..... My husband is working around the clock & has been for weeks, actually haven't seen him in weeks...wonder if he still looks the same.....so I'm doing it all alone. I told him yesterday the dog is higher than him on the support scale. OK just rambling now......

Wish you all well. Missed you much.

Joan Claffey

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  • 2 years later...

Helen,

I am glad to hear that Nick is doing better. Allie got up complaining

about her ankle. I guess the good stuff doesn't last long enough. She

is pretty tough, and will get thru whatever this may be as well. We see

Dr. Vehe in 2 weeks.

Enjoy the beautiful day. Get some rest, and let the sunshine on your

face for a few minutes. Have a great weekend too!

________________________________

From: [mailto: ] On

Behalf Of hburger64

Sent: Thursday, October 05, 2006 9:04 AM

Subject: Update.....

Nick is doing good. We saw his rheumy yesterday and it was so

reasuring to sit and talk things though with her.

The fact is, Nick has now`had 3 major vomiting episodes since the last

week of July. In fact, since AJAO it's been one thing after another

between the vomiting and wasp stings.

She doesnt think it's the remicade although she will not completely

rule it out yet. She wants to see what happens with October's

infusion. If he has another vomiting episode before that then it's off

to the gastro doc. She does want me to try and give him 10mg of

prednisone if he starts vomitting again to help his adrenal gland. But

he will need to be seen anyhows.

Nick had started to perk up on Tuesday afternoon and the doc was

expecting him to be feeling good at the appt, thanks to the

prednisone. She did contemplate keeping him on it longer, but decided

to just see what happens today and so far so good. He is doing well.

We talked about the labs and she said from looking at them it looked

like he had something viral brewing, so perhaps he did get a bug at

the same time as the remicade. I questioned weather or not we were

over medicating him and supressing his immune system too much, but she

said no. He is on a fairly large dose of remicade and often, but its

working for him.

Nick did lose weight, the offical drop was 3.5lbs :o((

So she cleared him for school yesterday so he did 1/2 a day. His

classmates were all excited to see him and suprised as they had all

made and sent get well cards home with one of the other kids the night

before.

On a side note, Nick came home and I asked him how was school and he

said great and guess what.... my ankles dont hurt anymore. I had no

idea he was still suffering with sore ankles but I guess the larger

doses of prednisone helped in other areas this week too.

if only prednisone was not do bad for you.... it does work wonders.

This would be such an easy diesase to deal with if we could just give

em all high doses of prednisone every day!

Hugs helen and (9,systemic)

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Helen! Nick!

So happy to hear the little trooper is off to school again (it's good when a

kid actually wants to go to school). And yeah, you're right about the Pred

being a good/bad thing. I always wonder what we're doing to our kids: Risks

vs Benefits, ya gotta weigh it up everytime.

Anyhow, on a lighter note, did you know that in Australia, when one vomits,

one is often said to be perking? So perking up is actually still being

sick!! LOL

Just thought I'd share more of the confusion of this English language of

ours. (As you're already aware, " thongs " are quite different items of

clothing/accessories depending on which continent you're living! LMAO)

HUGS

Jo

Bayly, 4, extended oligo

http://www.kidsgetarthritistoo.org.au

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  • 1 year later...

In a message dated 2/19/2008 1:57:09 P.M. Eastern Standard Time, amm@... writes:

I am almost thinking of trying a one month membership at a local gym if they would let me just to see how it does. I really can't afford it, especially with the gas, but to save $700+ if it doesn't work would be worth it!

a check on insurance. Mine allows $150 towards WW or certain gyms.

N.H.Delicious ideas to please the pickiest eaters. Watch the video on AOL Living.

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> I just finished typing a huge long update and lost it!! I hate when

> that happens.

That's why I prefer to type everything up in my Outlok Express and then

up load. At least it saves a copy of it if eats it.

> My surgeries have been put off... breast was biopsied and all is

> well there, ovarian cancer marker levels dropped and second ct showed

> no change so recheck in 6 months.

Congrats!

but odd chest pains have diminished now

> that most of my stress is over.

Maybe the doc will cancel that if things stay ok for now.

> Stress eating was not helping my attempt to lose weight, Yes, give me

> stress give me food! LOL....

I'm the same way. Some people lose the appetite during stressful times,

but mine increases.

> I have been reading, but just not participating due to my misble

failure.

Oh, never feel like that a! You've been through so much lately! And

if you wanna talk failure when it comes to weight loss, I've been trying

to lose these extra pounds for over 50 years. LOL

> I am

> looking at a treadmill on ebay, but need to wait until taxes come

> back. For one that will hold me it is a bit pricey

We paid about $400 for ours 8 years ago in Sears and it only holds to

250 pounds. They salesman says as long as I walk and not try to jog on

it then it'll be fine for my 280+ at that time. There was no way I could

afford any of the better ones that would be in my size range.

and I am

> concerned that it will bother my knee since WATP did.

To be honest, I rarely use the treadmill because of the stress on the

hip and Henry said he stopped because it bothered his knees. Before

spending a lot of money on one see if you can try one out for a while,

first. Hit a sporting goods store that sells the better quality ones and

try to walk for a few minutes. I only walked about 30 seconds on one

before buying it mostly because I really *wanted* to buy one ever since

I could no longer do my long outdoor walks because of the asthma. If

only I had walked a bit longer I would have realized that it really

wasn't the best exercise for my arthritis and would have saved the

money.

I am almost

> thinking of trying a one month membership at a local gym if they

> would let me just to see how it does. I really can't afford it,

Many places will let you visit free or cheaply for a week long trial

period, but I don't know of any that would let you pay for just one

month - all of them around here require a signed contract for a year

minimum. I read here that some Curves gyms let you pay by the month, but

the one in our city doesn't.

> My goals for this week post to the group at least once a day,

Good luck! LOL

> exercise daily (remember it isnt' much yet)

On another list I'm on, they started a challenge to exercise for just 5

minutes a day. It can be anything - the warm-up of an exercise video,

walking in place, even just swinging along to a song or 2 on the radio.

Whatever will get you up and moving for 5 minutes that's not already a

part of your normal routine. Once everyone is in that habit it'll be

increased to 10 minutes a day. Slow and steady.

and make better food

> choices (I got sucked back into the world of sugar and chocolate).

Blame Valentine's Day, right? :)

At least there's a pretty big gap between now and Easter, the next

chocolate-filled holiday. It's a good time to get out of the habit.

Sue in NJ

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