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Dear Sue in Colorado:

So sorry to hear that you are having a relapse. It must be really tough

going back up on the prednisone, but hey, anything to feel better, right? I

hope it works quickly for you and that you are back up to par soon.

Meanwhile, try not to push yourself too hard. Take care!

Kathy (AIH)

Seattle area

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Dear Sue:

I've never heard of a 'break point,' but I think I know what he means. You

might be in such an active phase right now, that you need the higher dosage

to keep it in check. My LFT's went up and down while I was at 15-20 mg, and

then they eventually leveled out. It took about 2 years though. I was

eventually able to reduce down to 8 mg, but it took a long time. From what

I've been reading from others all day, and from my own experience, the

doctors tend to rush trying to get us off of prednisone with painful results.

I hope you are able to find another drug that you can tolerate to supplement

your prednisone therapy. I haven't been able to tolerate the others so am

stuck on prednisone for life. Oh well!

Once again, I hope that you start feeling better soon!

Kathy (AIH)

Seattle area

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Hi Kathy;

Yes, it's not fun. I was really hoping to get to at least 10 mg pred.

but, nope.

I'm worried that my liver functions rose so quickly at 15 mg to just as

high when I wasn't on pred. Doesn't sound right.

So, now up at 30mg I feel like I have no stuff between the ears. I work

alot slower. I can't seem to get things done.

He (the doc) said something about finding my break point and he thinks

it's between 20-30 mg. Then he wants to switch me out to a different

drug. Have you ever heard of this style of treatment?

Sue

KATBERCOO@... wrote:

>

> From: KATBERCOO@...

>

> Dear Sue in Colorado:

>

> So sorry to hear that you are having a relapse. It must be really tough

> going back up on the prednisone, but hey, anything to feel better, right? I

> hope it works quickly for you and that you are back up to par soon.

> Meanwhile, try not to push yourself too hard. Take care!

>

> Kathy (AIH)

> Seattle area

>

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Guest guest

>From: Sue Irons <sue@...>

>

>Hi to all;

>

>Sorry I haven't written any more on the Fulk book.

>

>I had a 'relapse' if you will. I got pretty sick, dizzy, etc and my

>liver function went up to an all time high on 15 mg pred.

>

>Now I'm on 30 mg pred. and don't feel like it's helping much. I still

>ache, I'm beyond exhaustion, and can't even *think* clearly.

>

>The doc thinks we may have tried to reduce the pred too quickly. So

>back up to 30 for 3 months :-(

>

>Sue

>Colorado

>

>(Pray for the Columbine families, it's 10 miles away from my home. My

>senior attends a different school, but security is tight. Last night

>was prom and after prom party, there were patrol officers everywhere. I

>was VERY grateful)

Sue,

Keep your head up. I'm sending you a big hug. :)C

, St. Catharines, Ontario

P.S. Our thoughts go out to everyone who feels the loss of the children of

Littleton.

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Guest guest

Sue,

Sorry you've been having a hard time. I know how you must feel, having to

go back to 30 mgs. of Prednisone. I'd hate that! How gradually is your

doctor going to decrease the Prednisone now? I'm at 9 and working towards

8 mgs. Tonight I feel like a truck ran over me but no fatigue, at least.

I'm determined to work this through, just to see if I can do it. No silly

drug is going to take over my life (I keep telling myself.)

My thoughts are with the families of the Columbine students and with the

people in Denver and the surrounding areas. It's as though no place is

safe anymore. I think that we'll see some major changes in school security

now, and aren't you grateful that your senior will be out of school soon?

It's terrible for parents to have to be afraid for their children to go to

school, but I would be if I still had kids at home.

Take care,

Geri

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  • 7 years later...
  • 1 month later...

In a message dated 11/07/2006 11:53:47 GMT Daylight Time, math_nawi@...

writes:

Pearl

So sorry you broke your wrist - hope it is manageable and heals

quickly for you.

Me too Pearl. I must have missed the original mail. I hope it is well on the

mend by now as another month has passed since the above post.

Take care,

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In a message dated 16/08/2006 12:18:58 GMT Daylight Time,

kamerillat@... writes:

- I understand you finally got SSDI. Congrats. Were you ever diagnosed

with another disease like fibromyalgia or attention deficit disorder and, if

so, did you combine these (or any other condition that relates to PA) with

your application for benefits?

Hi Kathy,

I'm sorry, it looks like I have confused things with the way I answered

someone's mail. It wasn't me who had finally got the SSDI. I have had DLA

(Disability Living Allowance which is sort of the UK version of SSDI for around

three

years now. We can still claim DLA over here while we are working. (Although I

am not working)

I hope someone in the US can help you with your question Kathy.

Good luck,

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  • 3 weeks later...

- I understand you finally got SSDI. Congrats. Were you ever diagnosed

, that is great news... Sorry I missed this too but wanted to say

Congrats...

Love and Peace Always

Shaun and Barb

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>

> - I understand you finally got SSDI. Congrats. Were you ever

diagnosed

>

> , that is great news... Sorry I missed this too but wanted to

say Congrats...

Same Here, .

I'm so glad you got the ssdi. I have had it now for two years. I had

lawyer do it for the beginning and I won the case within a few months.

It helps to get the right attorney.

Janet

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  • 2 weeks later...

In a message dated 07/09/2006 12:51:07 GMT Daylight Time, SNBFOREVER2@...

writes:

, that is great news... Sorry I missed this too but wanted to say

Congrats...

Hi Shaun,

You'll also have missed me saying that it wasn't me. lol I think I was

congratulating someone at else at the time and it must have looked in the email

as

if it was me who was saying it.

Thanks anyway. lol

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In a message dated 08/09/2006 12:46:45 GMT Daylight Time, fam24@...

writes:

I'm so glad you got the ssdi. I have had it now for two years. I had

lawyer do it for the beginning and I won the case within a few months.

It helps to get the right attorney

Thanks Janet but it wasn't me. lol I was congratulating someone else who had

just been granted it and somehow there has been a mix up.

Take care,

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  • 2 weeks later...

Hello group I just wanted to let you know that I am still here. I

haven't posted in awhile, but I do read your posts. I haven't been

doing to well as of late, I was going to quit my job in sept. but

decided to wait until the end of the year, so we could get everything

in order for us to live on my husbands paycheck. And to get us

through christmas. And then quit my job. I'm not sure what I am going

to do with myself after that since I have worked from the time I was

17 yrs old. We traded both my car and my husbands truck to get a new

truck with lower payments. Saved 100.00 a month doing that, even

though I miss my car I know its better than having two car payments.

I feel like having to down size is all my fault, I get so depressed

over this,I feel I'm such a burden on my husband. He is doing more

for me, doing things around the house, cooks, dont have to worry

about starving, he is a chef, but I always tried to do the cooking at

home, since he did it all day at the restaurant. {He sure comes in

handy when the Holidays are here} He can make the most unbelievable

meals I have ever tasted. Not to mention how shocked my mother was to

find out I found a man that could cook and to be so shy too. Anyway,

I am tired alot, got the pain under control to some degree, just like

all of you good days and bad, on the bad I rest. Just wanted to let

you know I'm still here.

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