Re: re:hearing

[Guest guest]

In a message dated 01/02/2000 9:59:15 PM Eastern Standard Time,

mick@... writes:

<< I've been taking Tylenol to get me through the weekend.

Thanks.

Mick >>

Hi Mick- Pete has almost total hearing loss and it is definetly from the

RP..The only thing that stopped the loss was the prednisone--so call ASAP and

see if they recommend raising the pred until the " flare " stops so you won't

have anymore loss.Janet

[Guest guest]

I have total hearing loss in my right ear and approx. 30% loss in my

left....completely from the RP

[Guest guest]

Hi to all:

here. Was told by my docs that if ears or eyes start to be affected,

immediately

go on pred or up dosage. Terrible damage can happen really fast from what I

understand

due to inflammation of the blood vessels and that only the pred and usually

large

dosages

must be taken ASAP to try to stop damage. I know with the eyes their is a

condition called temporal arteritis that can practically blind you within 24

hours if you don't get

meds fast and I understand this is very similar to the condition that happens

with us.

In my office if a person presents with sx of temporal arteritis we start them on

80mg of

Pred immediately and get them to neurologist immediately. I can't speak for

others, but

I watch my ears (inner ear symptoms) and eyes very closely and would not wait to

see

a doc if I started to lose any ability with either. If my ears start to feel a

little full I immediately increase ibu by 800mg-1600 mg and if that doesn't work

then I won't

hesitate to go to pred. Hate the pred but am not willing to risk damage that

can

happens

so quickly. Again, I'm not a doctor so I'm not advising anyone what to do but

just wanted to emphasize how quickly damage can happen with us and move on any

symptoms quickly. Most of us have found out our docs aren't avail or don't

really

always know what to do so we have to arm ourselves with knowledge and be ready

in

case the worse happens.

Have a great week everyone!

>

>

> In a message dated 01/02/2000 9:59:15 PM Eastern Standard Time,

> mick@... writes:

>

> Baaboo19@... wrote:

>

> Mick >>

> Hi Mick- Pete has almost total hearing loss and it is definetly from the

> RP..The only thing that stopped the loss was the prednisone--so call ASAP and

> see if they recommend raising the pred until the " flare " stops so you won't

> have anymore loss.Janet

>

> > hi and welcome. maybe we can come up with answers that our doctors can't

[Guest guest]

Janet:

> Hi Mick- Pete has almost total hearing loss and it is definetly from the

> RP..The only thing that stopped the loss was the prednisone--so call ASAP

and

> see if they recommend raising the pred until the " flare " stops so you

won't

> have anymore loss.Janet

I am on the phone NOW! Oppppssss I better let them wake up first...Thanks

Janet....

Prayers, Hugs and Smilies

Mick

http://www.enetis.net/~rbreske/index.html

[Guest guest]

:

> I watch my ears (inner ear symptoms) and eyes very closely and would not

wait to

> see

> a doc if I started to lose any ability with either. If my ears start to

feel a

> little full I immediately increase ibu by 800mg-1600 mg and if that

doesn't work

> then I won't

> hesitate to go to pred.

I guess I did not realize this could happen so quickly. I was shocked there

was hearing loss in the left ear when I went in and I know that it has just

happened since November. Thanks for your response and like I told Janet I'm

calling first thing this morning.

Prayers, Hugs and Smilies

Mick

http://www.enetis.net/~rbreske/index.html

[Guest guest]

Thanks to each of you who responded. I've learned a lot in the past month

just reading your posts.

> I have total hearing loss in my right ear and approx. 30% loss in my

> left....completely from the RP

Prayers, Hugs and Smilies

Mick

http://www.enetis.net/~rbreske/index.html

[Guest guest]

just a little add-on when i lost the hearing in my right ear it was suddenly,

i woke up and it was gone!! so be careful!!!

[Guest guest]

In a message dated 01/04/2000 12:22:18 PM Eastern Standard Time,

Gabbyoreo@... writes:

<<

just a little add-on when i lost the hearing in my right ear it was

suddenly,

i woke up and it was gone!! so be careful!!! >>

Hi all- With Pete it was over a few hours of his first flare--he said it was

like a radio being turned of slowly..that was the left ear(total loss..then a

few months down the road another flare but he knew to increase the pred so

loss was 60%...you are right it happens very fast. Janet

[Guest guest]

Janet, Pete is sooo fortunate to have you. You have so much knowledge,

also. Love y'uns.

Jo

Re: re:hearing

>From: Baaboo19@...

>

>In a message dated 01/04/2000 12:22:18 PM Eastern Standard Time,

>Gabbyoreo@... writes:

>

><<

> just a little add-on when i lost the hearing in my right ear it was

>suddenly,

> i woke up and it was gone!! so be careful!!! >>

>Hi all- With Pete it was over a few hours of his first flare--he said it

was

>like a radio being turned of slowly..that was the left ear(total loss..then

a

>few months down the road another flare but he knew to increase the pred so

>loss was 60%...you are right it happens very fast. Janet

>

>>hi and welcome. maybe we can come up with answers that our doctors can't

>

[Guest guest]

I second that!!!!!!! Also Brett is to have !!!!

>>>>>>>>>>>>

Janet, Pete is sooo fortunate to have you. You have so much knowledge,

also. Love y'uns.

Jo

[Guest guest]

Janet et al,

Are these hearing losses permanent? Does increasing the prednisone help

stop hearing loss when one has ringing in the ears ?

B. CT

At 04:13 AM 1/5/2000 -0800, you wrote:

>Janet:

>

>Thanks for all your wonderful information. I suppose I got a bit scared by

>all this hearing loss info but at least I know it can happen and I best be

>on my guard. Since I already seem to have some loss in one ear I better not

>mess around.

>

>Thanks for explaining the sirens too! I have a lot of ear ringing in that

>left ear which I notice comes and goes with the ear hurting.

>

>Prayers, Hugs and Smilies

>Mick

>http://www.enetis.net/~rbreske/index.html

>

>

>

>---------------------------

[Guest guest]

In a message dated 1/5/00 5:05:58 AM Central Standard Time, mick@...

writes:

<< So how do you know if you have an ear infection or the RP? I mean " I know "

but how do your doctors handle this? >>

Mick sorry to tell you but 99.9% of the time it is NOT an ear infection, You

need to also have and ENT DOC, they can look inside for fluid, but with us

there is no fluid, what it is, is inflammation of the Eustachian Tube which

in turn cause severe pain, and the doc's can not see it although your SED

rate or C-reactive should be elevated during the severe inner ear pain. You

Need to have a hearing test every 3-5 months during the pain, this is VERY

important to do so, I just had mine and I have lost 60% in Left ear and 45%

in Right ear, but remember this is because I had severe inner ear pain for

over 11 months (which thank God its all gone now).

As far as the Metho, it should kick in about the 4th week (some people it

takes longer but the average is 4 weeks) But don't give up till 8-9 weeks.

I took the Metho and it worked at week 4 (took all pain away) but at week 8 I

got NASTY sores all over my body and rashes, so needless to say that was the

end of the Metho. We also tried Arava then Immuran but all were

unsuccessful, Then we Tried Enbrel and WAHOOOOOO I am a Normal Person again!

I wish you all could try the Enbrel I know it works and has less side effects

then others but the down side is cost and Ins problems, Just remember Mick

never give up there are others is one does not work it is just that it takes

time. I am praying for you and thinking about you every day and I know its

going to work out.

If you ever need a friend I am here!

Love,

[Guest guest]

Thanks everyone!

I called the Mayo and Doc upped the zone. I started the methotrexate and

sure do hope this kicks in soon as this zone is making me feel like the

Pillsbury Dough Boy!

So how do you know if you have an ear infection or the RP? I mean " I know "

but how do your doctors handle this? The Mayo doc asked me about an

infection and i'm thinking do I have to have someone look in my ear

everytime it hurts?

Prayers, Hugs and Smilies

Mick

http://www.enetis.net/~rbreske/index.html

[Guest guest]

Janet:

Thanks for all your wonderful information. I suppose I got a bit scared by

all this hearing loss info but at least I know it can happen and I best be

on my guard. Since I already seem to have some loss in one ear I better not

mess around.

Thanks for explaining the sirens too! I have a lot of ear ringing in that

left ear which I notice comes and goes with the ear hurting.

Prayers, Hugs and Smilies

Mick

http://www.enetis.net/~rbreske/index.html

[Guest guest]

In a message dated 1/5/2000 3:13:24 AM Pacific Standard Time, mick@...

writes:

<< I have a lot of ear ringing in that

left ear which I notice comes and goes with the ear hurting. >>

I started having Tinnitus (ringing in the ear) a few weeks after my initial

ear pain started in Feb 99. The ringing is with me every day. Ronnie

[Guest guest]

In a message dated 1/5/2000 6:52:11 AM Pacific Standard Time,

susan.burdick@... writes:

<< Does increasing the prednisone help

stop hearing loss when one has ringing in the ears ? >>

I have been on what I think are high doses of Pred for about one year

(anywhere from 40 or 45 to start for a month dwindling slowly down to the 22

I am currently on) and the ringing never stopped. It may have stopped the 3

1/2 days that I was practically pain free last year. 2 1/2 days and another

day. Ronnie

[Guest guest]

Mick:

When I had ear problems last March I went to the ENT and was told that

RP causes inflammation of the eardrum and that can cause the drum to

buldge. If you don't have

a cold or active viral infection, it is probably the RP. My

understanding of the inner ear

problems and dizziness is that the blood supply is cut off and the

hearing portion of you

ear doesn't get blood to it so like the eye the nerves etc die. Not

actually postive that is

exactly what happens, but pretty sure it is close. The Pred stops the

inflammation and our immune system from attacking which is why it is so

helpful.

Hope this helps. If I'm incorrect about this, someone please let me

know.

> Mick wrote:

> So how do you know if you have an ear infection or the RP? I mean " I

> know "

> but how do your doctors handle this? The Mayo doc asked me about an

> infection and i'm thinking do I have to have someone look in my ear

> everytime it hurts?

>

> Prayers, Hugs and Smilies

> Mick

> http://www.enetis.net/~rbreske/index.html

>

>

> -----------------------------------------------------------------------

> [

[Guest guest]

In a message dated 01/05/2000 9:52:00 AM Eastern Standard Time,

susan.burdick@... writes:

<< Janet et al,

Are these hearing losses permanent? Does increasing the prednisone help

stop hearing loss when one has ringing in the ears ?

B. CT >>

- I'm a little behind---hearing losses are 90%(my guesstamit)

permanent,what I mean is that on cloudy,stormy days Pete's hearing is worse

that on a sunny day...The left ear is totally deaf but the right varies from

" bad to worse " with the weather and the flares..Because Pete has alot of

distortion from the damage a hearing aid helps a little but mostly just makes

the distortions louder. Janet

[Guest guest]

Thanks Janet. I just want to be aware because Brett's ears have been so

swollen in the past. They are down a bit now but still very red in the

area. His Dr. put him on antibiotics this week to see if the redness will

disappear. Hope Pete has been feeling good during the holidays.

B.

>- I'm a little behind---hearing losses are 90%(my guesstamit)

>permanent,what I mean is that on cloudy,stormy days Pete's hearing is worse

>that on a sunny day...The left ear is totally deaf but the right varies from

> " bad to worse " with the weather and the flares..Because Pete has alot of

>distortion from the damage a hearing aid helps a little but mostly just

makes

>the distortions louder. Janet

>

>---------------------------

[Guest guest]

My doctor even the new one has complete faith in my ability to figure out the

dose of pred I need at any given time. For me the main goat is not to loose

any more eyesight. so whenever my eyes feel like a flare in the making I try

to stop it dead in its tracks by upping the pred to no less than 80 mgs a

day. I have open ended refills for the pred in three doses. while it is the

drug you love to hate but preserving my sight and my breathing ability are

very important to me

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

give today my best shot

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://members.tripod.com/~autoimmune

[Guest guest]

Angie,

Sounds like you are finally with a good Doctor. I hope that things improve

from here on for you. When Brett gets to know his flares better I hope his

Dr. will allow him to increase the pred when he feels necessary.

Our prayers are with you.

B.

At 01:08 AM 1/8/2000 EST, you wrote:

>My doctor even the new one has complete faith in my ability to figure out

the

>dose of pred I need at any given time. For me the main goat is not to loose

>any more eyesight. so whenever my eyes feel like a flare in the making I try

>to stop it dead in its tracks by upping the pred to no less than 80 mgs a

>day. I have open ended refills for the pred in three doses. while it is the

>drug you love to hate but preserving my sight and my breathing ability are

>very important to me

>

>

>Love and Gentle Hugs,

>Angie

>Yesterday will fade and tomorrow will take care of itself. Lord, help me

>give today my best shot

>http://www.geocities.com/acenneno_1999

>http://rpolychondritis.tripod.com/index.html

>http://members.tripod.com/~autoimmune

>

>---------------------------

[Guest guest]

Hi Angie, Sorry haven't written in awhile but I did try and send you a note

the other day did you get it? I hope you are feeling better again or at

least better than before. Let me know how you are doing I care and worry

about you. I flared after the surgery and every time I've tried to cut back

the pred I would flare up again. It gets frustrating doesn't it? My hearing

almost went completely in my right ear and that never happened like that

before. It's slower healing on the knee because pred impedes healing so I

feel like I can't win alot of times . I am back at work again worked my

first full day this week and by the end of the day I was exhausted and my

knee wasn't too happy either. At least I have a job still most places would

have fired me after being out so long. I have a hard time seeing the things

etc. that I know I should be thankful for when everyone expects so much more

of me than I am able to give and I can't sleep and am hurting. I see so many

things I need to do at work and at home aqnd it's overwhelming and I feel

like I should do more and I'm more of a burden than a help. It has been said

that if you have your health you have everything and I know now that that is

very true. Anyway my husband has to go out of town soon for a class and both

his great pyrenees are sick with a cough and I get the job of making them

take their meds etc but I basically do it now anyway. I may not write much

but I do think of you often and remember you in my prayers. I don't know how

you are able to do so much. I admire you Angie you have accomplished so much

with starting this group and your own catering business and all the other

things you do. You have made a mark on this world and I wish I could say the

same. It's nice to know that in some way your life has mattered and I often

wonder if mine has made a difference at all. Enough of that I didn't mean to

get so gloom and doomy. So tell me about your doctors are you happy with

them and are they listeners and know about this disease? Are they helping

you to feel more comfortable so you have less pain and able to sleep better?

What did they decide to do? Write when you get a chance. Love Sue P

Re: re:hearing

> My doctor even the new one has complete faith in my ability to figure out

the

> dose of pred I need at any given time. For me the main goat is not to

loose

> any more eyesight. so whenever my eyes feel like a flare in the making I

try

> to stop it dead in its tracks by upping the pred to no less than 80 mgs a

> day. I have open ended refills for the pred in three doses. while it is

the

> drug you love to hate but preserving my sight and my breathing ability are

> very important to me

>

>

> Love and Gentle Hugs,

> Angie

> Yesterday will fade and tomorrow will take care of itself. Lord, help me

> give today my best shot

> http://www.geocities.com/acenneno_1999

> http://rpolychondritis.tripod.com/index.html

> http://members.tripod.com/~autoimmune

>

> ---------------------------

[Guest guest]

B:

Brett will quickly get to know when he is heading for trouble. He

should trust his

instincts over the docs because in my case, most of the time mine are

right. Don't

wait for docs to return calls etc if he is in trouble. Too much can

happen too fast.

Take care,

E Burdick wrote:

>

>

> Angie,

> Sounds like you are finally with a good Doctor. I hope that things

> improve

> from here on for you. When Brett gets to know his flares better I

> hope his

> Dr. will allow him to increase the pred when he feels necessary.

>

> Our prayers are with you.

> B.

>

> At 01:08 AM 1/8/2000 EST, you wrote:

> >My doctor even the new one has complete faith in my ability to figure

> out

> the

> >dose of pred I need at any given time. For me the main goat is not to

> loose

> >any more eyesight. so whenever my eyes feel like a flare in the

> making I try

> >to stop it dead in its tracks by upping the pred to no less than 80

> mgs a

> >day. I have open ended refills for the pred in three doses. while it

> is the

> >drug you love to hate but preserving my sight and my breathing

> ability are

> >very important to me

> >

> >

> >Love and Gentle Hugs,

> >Angie

> >Yesterday will fade and tomorrow will take care of itself. Lord,

> help me

> >give today my best shot

> >http://www.geocities.com/acenneno_1999

> >http://rpolychondritis.tripod.com/index.html

> >http://members.tripod.com/~autoimmune

> >

> >---------------------------

[Guest guest]

Thanks ...I'll tell him that !

B.

At 10:23 PM 1/12/2000 -0500, you wrote:

>

>

> B:

>

>Brett will quickly get to know when he is heading for trouble. He

>should trust his

>instincts over the docs because in my case, most of the time mine are

>right. Don't

>wait for docs to return calls etc if he is in trouble. Too much can

>happen too fast.

>

>Take care,

>

[Guest guest]

Oh Sue your life mattered, mattered to me. I am so oh so glad that

misunderstanding got cleared up. you are such an important asset in my life

and an inspiration to me. not only are you libing with this rotten disease

you have other worse problems to deal with. you are one very strong woman to

be admired for sure. Never underestimate your worth I wish we lived closer so

we could chat with each other. do you have a mircophone for your computer?

there are free programs that would allow uis to actually voice chat.

I hope you didn't go back to work too quickly so please take care of that

knedid I tell you my new doic put me on colchicine? wasn't it you that

mentioned it? I know all about the pred rebound effect. I can't get lower

than 20 and that takes forever.

Sue remember you are important to me and I love you, write me anytime and

don't be surprised if you get a phone call from me. BTW what time zone are

you in?

Love and Gentle Hugs,

Angie

Yesterday will fade and tomorrow will take care of itself. Lord, help me

give today my best shot

http://www.geocities.com/acenneno_1999

http://rpolychondritis.tripod.com/index.html

http://members.tripod.com/~autoimmune