Good news!!

[Guest guest]

Amy,

Congratulations to your husband, you must be very proud of him! I hope when

you said that you stopped your prednisone for three days that this was part

of a weaning schedule you were using and just didn't decide to stop the drug

all together. It's a nasty drug and one that must be used carefully.

Marilyn

mhogg69@...

----Original Message Follows----

From: DOGEJA@...

Reply-Stillsdisease

Stillsdisease

Subject: Good News!!

Date: Thu, 22 Aug 2002 15:36:53 EDT

I just wanted to share with one and all that my husband made the E-7 board.

He is now a senior NCO in the Army. Sgt. First Class. I am very proud of

him. An update of my Stills... I tried to go three days with no pred. I

didn't last... I am back to taking 5 mg a day and feel oh so much better. I

didn't think 5 little mg would make any differance but I guess it does. Amy

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Dear Amy & Husband,

Congratulations to both of you!! What wonderful news. It's always so nice

to hear something very wonderful. If possible...both of you go out and

celebrate.

Amy, just be careful with your prednisone. Everyone is different, but it is

a hard drug to stop cold turkey. I hope that you are feeling better soon

friend.

Love, Sue #2

-- Good News!!

Date: Thu, 22 Aug 2002 15:36:53 EDT

I just wanted to share with one and all that my husband made the E-7 board.

He is now a senior NCO in the Army. Sgt. First Class. I am very proud of

him. An update of my Stills... I tried to go three days with no pred. I

didn't last... I am back to taking 5 mg a day and feel oh so much better. I

didn't think 5 little mg would make any differance but I guess it does. Amy

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Dear Amy,

That is Wonderful News, Congradts! I hope that you didn't stop the

Prednisone on your own. This med must be stopped very slowly especially the

lower the amount your on. I don't mean to preach I am just concerned.

Thanks For The Wonderful News. You Made My Day!

Sorry I am behind in my emails. I am trying to catch up today.

Love,

jatw@...

[Guest guest]

Hi Amy,

Great to hear the news regarding your husband, its wonderful.

Apologies for the delay but I have been on holiday and only got back

yesterday whereby I have done nothing but wash and tumble dry 11 loads of

clothes!!! So this is the first time I have been on-line for a few weeks.

Take care

a, Oliver and the clan

[Guest guest]

Ruth, how long have you been on the prednisone? I started at 35 or 40...not sure, and have tapered to 5 mg now. It has been at 5 mg for about 9 months now. Hopefully, I can get down. But this has been going since July of 01...now we are September of 02. I see the doctor next month.

But I have begun Plaquenil now. THe Rheumatologist gave me the meds for pain. He said that it helps with the joints that are affected by Lupus and Rheumatoid Arthritis. However, he has not dx me with those yet. However, the meds seem to be making a difference for me at least in sleeping. I can sleep all night long! THe first time in years and years! So what I am wonderinf,,,can you take something for the pain stiffness too? Just wondering.

Debby

[ ] Good News!!

Hi everyone, I just wanted to share some good news. I had normal LFTS after finishing my tapering on predisone so the doctor said I get to be off predisone for a couple of months and than they will recheck me. Today was the last day, I took my last 2.5 mg dosage, so starting with 50 mg and ending with 2.5. I am so thrilled I get off predisone for two months, what a blessing!! I was wondering if anyone could tell me how long they had the joint pain when they tapered on predisone. Rhonda and I have been tapering and having a lot of joint pain. I also wondered how long it takes to get rid of the excess weight from the predisone, I am rather hoping to see it come off. I have never gained weight so rapidly in my life as I did with the predisone. By the way-Jerry thanks so much for the info on autoimmune cholangitis, I really appreciate your posts on all the great websites. Ruth

[Guest guest]

Debby,

I started on 50 mg of predisone in March, when the doctor started

tapering me, he dropped me to 40 mg from 50 in one day! That didn't

feel so good. Than they dropped me from 40 mg to 35 mg, reducing it

by 5 mg for each two weeks. When I got down to 5 mg they wanted me

to stop and I asked them if I could go to 2.5 for two weeks and do it

more slowly. I complained about how fast the tapering was going,

this is where I would have rather had a hepatologist on the case. My

new G.I. said they tapered me too fast. I am also taking 100 mg. of

immuran. I thought about medicine for the joint pain but I am taking

20 plus pills a day as it is. I thought I would wait and see if the

joint pain eases up after tapering. I have had joint pain before I

started predisone but not as severe as this, I think the predisone

probably is the reason. If the pain doesn't let up after another

month I might ask my primary about Plaquenil. I am so glad you are

getting some relief at least with the joint pain, you have had so

much to deal with.

Ruth

> Ruth, how long have you been on the prednisone? I started at 35 or

40...not sure, and have tapered to 5 mg now. It has been at 5 mg for

about 9 months now. Hopefully, I can get down. But this has been

going since July of 01...now we are September of 02. I see the

doctor next month.

>

> But I have begun Plaquenil now. THe Rheumatologist gave me the

meds for pain. He said that it helps with the joints that are

affected by Lupus and Rheumatoid Arthritis. However, he has not dx

me with those yet. However, the meds seem to be making a difference

for me at least in sleeping. I can sleep all night long! THe first

time in years and years! So what I am wonderinf,,,can you take

something for the pain stiffness too? Just wondering.

>

> Debby

> [ ] Good News!!

>

>

> Hi everyone,

> I just wanted to share some good news. I had normal LFTS after

> finishing my tapering on predisone so the doctor said I get to be

off

> predisone for a couple of months and than they will recheck me.

> Today was the last day, I took my last 2.5 mg dosage, so starting

> with 50 mg and ending with 2.5. I am so thrilled I get off

predisone

> for two months, what a blessing!! I was wondering if anyone could

> tell me how long they had the joint pain when they tapered on

> predisone. Rhonda and I have been tapering and having a lot of

joint

> pain. I also wondered how long it takes to get rid of the excess

> weight from the predisone, I am rather hoping to see it come

off. I

> have never gained weight so rapidly in my life as I did with the

> predisone. By the way-Jerry thanks so much for the info on

autoimmune

> cholangitis, I really appreciate your posts on all the great

> websites.

> Ruth

>

>

>

[Guest guest]

Ruth... one of the reasons you take prednisone is to alleveiate

inflammation which can cause pain in your joints... a damagd liver

restricts your adrenal glands ability to make natural

anti-inflammatories such as cortisol.... and corticosteroids such as

prednisone take the place of the adrenals funcion.... weaning too fast

from pred. can be painful as the adrenals are lazy and forget to start

producing corisol since it had been done for them.

I " m on 5 mgs and could probably go to

2.5 but haven't yet.. My joint pain has returned and I fight it with

Advil but also have become accustome to it (pain) and don't notice it if

I don't dwell on it... my biggest sorce of pain is my back and I may

have to ask for a more potent painkiller some day but I really don't

want any narcotics... mabe I'll give Ultram a try..

Jerry

[Guest guest]

Ruth,

Wonderful news.....we have our fingers crossed for you...

Cheryl & Randy

[Guest guest]

Ruth.... great news on your reports!

glad to hear it..

My doctors have told me that I would be on prednisone for the rest of my

life (or 60 more yrs....whichever comes 1st ,,, I opted for the latter)

keep the good news coming...

Jerry

[Guest guest]

Ruth

I am so pleased for you. It is great just to know you might get off prednisone, but to actually be doing it is wonderful. Hope all goes well.

Chris

[Guest guest]

Good Morning Ruth !

I'm just delighted to hear your news. You always have been so a dear friend to me and your e-mails had a great impact in my walk with God. By the way, I welcome all the pounds that you might want to loose since my weight right know has become a major issue.

God Bless You !

Tony

[Guest guest]

Hi ,

Just a mail to say congrats Ruth thats great news!

I've just dropped 1mg so am now on 2mgs pred (and 2g Cellcept). I

will be tapered by 1mg or 1/2mg at a time every few months until i

(hopefully) come off it. Your have reduced so fast that is great for

you! I started on 25mgs 2years ago and and am still tapering

slowly...

As for the weight I think it depend how active you are and what sort

of metabolism you had pre pred, I think for some people it takes a

few years to get back to pre pred proportions... I hope it is

quicker for you!

Jerry- My doc is surprised I had made it down to 3mgs with no flare

up.. so I may be in the same boat as you.. although I don't fancy

being on the pred for the rest of my life.. i'm only 23 now!!

Best wishes all

AIH dx aug 2000 London UK

[Guest guest]

Dear Tony,

I wish so much I could give you my extra pounds and more to make you well. You are in my thoughts and prayers daily. We all love you dear friend and we are looking to the Father for a special touch for you. Tony, I am so glad I could somehow be of encouragement to you, that is a direct answer to prayer, and a great honor to be your friend.

Isaiah 40:29-31:

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will run and not grow weary, they will walk and not be faint.

rmeeks3230@... wrote:

Good Morning Ruth !I'm just delighted to hear your news. You always have been so a dear friend to me and your e-mails had a great impact in my walk with God. By the way, I welcome all the pounds that you might want to loose since my weight right know has become a major issue. :)God Bless You !Tony

[Guest guest]

... i certainly hope not either!

I'm sure you know tho that each of us is different and each can only

relate his/he own experience... thats what makes this group so

educational.

In my case I think its because I've already been transplanted and my

docs don't want to take any chances. Jeez I don't want to be on it the

rest of my life either and I'm almost 60, so what is that another 40 or

50 yrs.?. I'd kill myself to be 23 again or even 43'

Your going to be just fine!

love you ...jerry

Hi ,

Just a mail to say congrats Ruth thats great news!

I've just dropped 1mg so am now on 2mgs pred (and 2g Cellcept). I

will be tapered by 1mg or 1/2mg at a time every few months until i

(hopefully) come off it. Your have reduced so fast that is great for

you! I started on 25mgs 2years ago and and am still tapering

slowly...

As for the weight I think it depend how active you are and what sort

of metabolism you had pre pred, I think for some people it takes a

few years to get back to pre pred proportions... I hope it is

quicker for you!

Jerry- My doc is surprised I had made it down to 3mgs with no flare

up.. so I may be in the same boat as you.. although I don't fancy

being on the pred for the rest of my life.. i'm only 23 now!!

Best wishes all

AIH dx aug 2000 London UK

[Guest guest]

That's awesome. Get away from that scale. I had to hide mine. I

was in awe of my muscles one morning and then I decided to step on

the scale...and then proceeded to have a meltdown when it was up.

It truly shouldn't matter...

> Well, I'm almost done with week 2, challenge 2. It's gone

> well...food had been 95% clean and according to plan, workouts as

> well. Scale hasn't changed much - 1.4 lbs down - but I don't

really

> care about those numbers too much (not that I wouldn't like to see

> them go down much faster lol!). But...and this is the exciting

> part...I measured today. I'm down 11.75 inches total in just

under

> two weeks!! WOOT WOOT!!, as Kathi used to say (Kathi...are you

still

> out there? I miss your posts!)

>

> Just wanted to share my good news. Hope everyone is having a good

> weekend!

>

>

[Guest guest]

,

That was how my hearing deteriorated. It kept fluctuating until there was

little room and it remained consistent. There had been a question about why

the fluctuation but no investigation. Now with the unimplanted ear I have

been experiencing fluctuations in hearing for quite some and continues so.

Good News!!

> Hi everyone,

>

> I received good news from my CI audi today. She says I'm *definitely* a CI

> candidate, but they need to conduct further testing for my left ear

because

> it has been fluctuating between a severe to profound loss and a profound

> loss. My CI audi told me that regardless of this inconsistency, I'm still

> considered a candidate -- they just need to understand the reason why this

> inconsistency is taking place before they can proceed with surgery.

>

> I'm scheduled for another ABR next month and will have further hearing and

> speech discrimination tests in August.

>

> My CI center will be sponsoring a picnic next week for CI recipients and

> anyone interested in knowing more about CIs. I definitely plan to go and

am

> excited about the opportunity to talk to others about their CI

experiences.

>

> As usual, I'll keep you all updated on how things progress.

>

>

>

>

>

>

>

>

[Guest guest]

Hi ,

Yes, it seems that all of my audiograms indicate a severe to profound

loss -- with the exception of the audiogram conducted in April. I'm not sure

why although I do have problems with feeling as though my left ear is

" popping " (especially when the barometric pressure changes) so perhaps

that's contributing to the inconsistent results.

One thing is for sure...my CI center is being *very* thorough in their

evaluation. <smile> I appreciate that because I want to know as much

as possible about the cause of my hearing loss. So far, the only thing I

know is that it was caused by prematurity.

Hopefully, the upcoming tests will be able to provide more information about

the cause as well as why my left ear is fluctuating and my right ear has

become worse.

When I e-mailed my CI audi to find out my current degree of hearing loss,

she said it is severe to profound in both ears with the left ear being worse

than the right.

[Guest guest]

Hi ,

One additional comment...After my initial hearing and speech tests, my CI

audi said that she'd like to see me use a CI in my left ear and a HA in my

right.

I don't know if her opinion has changed since then, but perhaps the ABR and

audiogram/speech tests I have done over the next two months will help

determine which ear should be implanted.

[Guest guest]

lisa, is hearing loss in your family or just? you?

> Re: Good News!!

>Hi ,

>Yes, it seems that all of my audiograms indicate a severe to profound

>loss -- with the exception of the audiogram conducted in April. I'm not sure

>why although I do have problems with feeling as though my left ear is

> " popping " (especially when the barometric pressure changes) so perhaps

>that's contributing to the inconsistent results.

>One thing is for sure...my CI center is being *very* thorough in their

>evaluation. <smile> I appreciate that because I want to know as much

>as possible about the cause of my hearing loss. So far, the only thing I

>know is that it was caused by prematurity.

>Hopefully, the upcoming tests will be able to provide more information about

>the cause as well as why my left ear is fluctuating and my right ear has

>become worse.

>When I e-mailed my CI audi to find out my current degree of hearing loss,

>she said it is severe to profound in both ears with the left ear being worse

>than the right.

>

>

[Guest guest]

Hi Tina,

I was adopted shortly after birth, so I don't know whether or not hearing

loss was present in my family.

[Guest guest]

,

That has been my experience with the fluctuating hearing, the intermittent

popping sound, as if whatever is firing off the last of whatever it does,

though I have not associated with any external conditions.

Re: Good News!!

> Hi ,

>

> Yes, it seems that all of my audiograms indicate a severe to profound

> loss -- with the exception of the audiogram conducted in April. I'm not

sure

> why although I do have problems with feeling as though my left ear is

> " popping " (especially when the barometric pressure changes) so perhaps

> that's contributing to the inconsistent results.

>

> One thing is for sure...my CI center is being *very* thorough in their

> evaluation. <smile> I appreciate that because I want to know as much

> as possible about the cause of my hearing loss. So far, the only thing I

> know is that it was caused by prematurity.

>

> Hopefully, the upcoming tests will be able to provide more information

about

> the cause as well as why my left ear is fluctuating and my right ear has

> become worse.

>

> When I e-mailed my CI audi to find out my current degree of hearing loss,

> she said it is severe to profound in both ears with the left ear being

worse

> than the right.

>

>

>

>

>

>

>

>

[Guest guest]

Just want to confirm, is there any other conditions that produce popping

sound beside eustachian tube dysfunction?

Regards/

Jerome

Re: Good News!!

,

That has been my experience with the fluctuating hearing, the intermittent

popping sound, as if whatever is firing off the last of whatever it does,

though I have not associated with any external conditions.

[Guest guest]

Jerome,

Someone on another list suggested that my CI audi may be looking for signs

of Large Vestibular Aqueduct Syndrome/LVAS since (like AN) it is consistent

with my neonatal history.

My CI audi said that she was looking for more information about the presence

of a " condition " but didn't specify what that was.

[Guest guest]

,

We're all here for you and rooting you on. Once you get past all the testing,

I'm sure you'll be on your way to hearing with a CI. It just sounds as if they

are making sure they check everything out and that is a good thing. Hang in

there.

Alice

[Guest guest]

Alice,

I completely agree! I'm glad my CI center is being so thorough in their

evaluation. It's taking more time, but that's okay. (I've taken the fall

semester off from school, so time constraints won't be a problem.) I'd

rather have my CI team work at a slower pace to get as much information as

possible instead of rushing through the process and making me feel like I'm

in a whirlwind of confusion.

When all is said and done, I will know that I've exhausted all means

possible for better hearing.

In the end, patience is always rewarded.