Re: my headaches & my doc. visit

[Guest guest]

Dear Lu- Pete gets temporal headaches..they were going to do a biopsy to see

if it was arterial vasculitis but they said the treatment is

prednisone.....So I said why put him through a biopsy he's already on

pred....they said " no biopsy " . They usually only last a few hours but are

fierce---we treat them like a flare...Hope they find out what yours are from

so they can treat them properly....I am not calling Angie as I knoiw at least

you and are in touch..Please let her know she is in my prayers

everyday.. Janet

[Guest guest]

Lu, you deserve to let off some steam. You always have a good word for all

of us, and I can tell you are a lovely person. Sorry you are having such a

bad time with these headaches. Love and God Bless, Ronnie

In a message dated 1/19/2000 3:09:10 PM Pacific Standard Time, Lu1953@...

writes:

<< Hi everyone,

Just thought I would check in and tell you, I went to the neuroligist today

about my headaches. He is going to do some bloodwork. But he seems to think

its the polychondritis giving me the headaches..... I wonder why this stupid

illness will NOT leave me alone !!!!! { sorry, I am letting off steam }

Anyway, I'll keep you posted and let you know the final verdict.......

I've had a headache all day. BUt he mashed on my head. I told him I would

come back and slap him if he gave me a headache...he must not have believed

me LOL

okay so I am kidding....I'm all talk!!!!

I did call Angie last night, is right she really needs out prayers

right now. Take care, I love you all.

LU

>>

[Guest guest]

In a message dated 01/19/2000 5:19:14 PM Central Standard Time,

Baaboo19@... writes:

<< So I said why put him through a biopsy he's already on

pred....they said " no biopsy " . They usually only last a few hours but are

fierce---we treat them like a flare.. >>

how often does Pete get them? Bless his heart I think he thought that

might be my problem or ??? I really don't know I just thought mine were

migraines.

I'll be sure and tell Angie. Thanks!

Love you

Lu

[Guest guest]

In a message dated 1/19/2000 3:18:59 PM Pacific Standard Time,

Baaboo19@... writes:

<< Dear Lu- Pete gets temporal headaches..they were going to do a biopsy to

see

if it was arterial vasculitis but they said the treatment is

prednisone.....So I said why put him through a biopsy he's already on

pred....they said " no biopsy " . They usually only last a few hours but are

fierce---we treat them like a flare.. >>

had been experiencing the same things. The arterial vasculitis was

also looked at for J. But it turns out that just stepping up her prednisone

stopped the headaches right away. She was experiencing headaches so bad that

she couldnt get out of bed. When the Dr upped her pred the headaches went

away within 24 hours.

I dont mean a massive dose of pred. I think they just went up to 30 or there

abouts.

She was at that level for a short time. Now she is on Imuran and her pred is

down to around 5 a day. She has not had a headache for awhile. Other than

normal once in awhile headaches. But the ones she had been havng are all gone

for more than a year, almost two years now.

Roy

[Guest guest]

In a message dated 1/19/2000 3:34:55 PM Pacific Standard Time,

Ronniegrl@... writes:

<< Lu, you deserve to let off some steam. You always have a good word for

all

of us, and I can tell you are a lovely person. >>

Yes Lu, I agree with Ronnie about letting off steam. You do always have a

good word for everyone else. : ) Me, well I think once you said something

good about me. I think it was something about it being good I live in

Oregon. : )

Hope your dr can knock out those headaches.

Roy

[Guest guest]

In a message dated 1/19/2000 3:18:59 PM Pacific Standard Time,

Baaboo19@... writes:

<< Pete gets temporal headaches. >>

Lu, just in case I wasnt really clear. These were the same type of

headaches that was experiencing. She felt it in her temples and down

the back of her neck when they were really bad.

They had tried TMJ as a cause also. But that didnt help any either.

Roy

[Guest guest]

In a message dated 01/19/2000 10:29:32 PM Eastern Standard Time,

Rlr1999@... writes:

<< << Pete gets temporal headaches. >> >>

Hi all- Since Pete added the cyclosporin to his medication regime the

headaches are about 90% less but then so are most of his other symptoms. He

has been extremely fortunate that all his lab work has remained normal also

90% of the time. The only onesd that have gone up are: Sed Rate during a

flare and sugar when preds was upped. We do have to be thankful as others

suffer so much...You are all in my prayers..Take care Janet

[Guest guest]

In a message dated 01/19/2000 10:33:35 PM Eastern Standard Time,

Rlr1999@... writes:

<< normal once in awhile headaches. But the ones she had been havng are all

gone

for more than a year, almost two years now.

Roy >>

What a Blessing!!!!!!!!!!!

[Guest guest]

In a message dated 01/19/2000 10:33:35 PM Eastern Standard Time,

Rlr1999@... writes:

<< normal once in awhile headaches. But the ones she had been havng are all

gone

for more than a year, almost two years now.

Roy >>

What a Blessing!!!!!!!!!!!

[Guest guest]

In a message dated 01/19/2000 5:34:55 PM Central Standard Time,

Ronniegrl@... writes:

<< Lu, you deserve to let off some steam. You always have a good word for

all

of us, and I can tell you are a lovely person. Sorry you are having such a

bad time with these headaches. Love and God Bless, Ronnie >>

OH, Thank you Ronnie,

You are a sweet person also, I love the way you are always encouraging others

in this group and me. Thank you for all you do!

I love you!

LU

[Guest guest]

In a message dated 01/19/2000 9:29:30 PM Central Standard Time,

Rlr1999@... writes:

<< Lu, just in case I wasnt really clear. These were the same type of

headaches that was experiencing. She felt it in her temples and down

the back of her neck when they were really bad.

They had tried TMJ as a cause also. But that didnt help any either.

Roy

>>

what did they finally do?

[Guest guest]

In a message dated 01/19/2000 9:33:08 PM Central Standard Time,

Rlr1999@... writes:

<< Hope your dr can knock out those headaches.

Roy >>

LOL Thank you Roy

[Guest guest]

In a message dated 01/19/2000 9:33:47 PM Central Standard Time,

Rlr1999@... writes:

<< The arterial vasculitis was

also looked at for J. But it turns out that just stepping up her prednisone

stopped the headaches right away. She was experiencing headaches so bad

that

she couldnt get out of bed. When the Dr upped her pred the headaches went

away within 24 hours.

I dont mean a massive dose of pred. I think they just went up to 30 or there

abouts.

She was at that level for a short time. Now she is on Imuran and her pred

is

down to around 5 a day. She has not had a headache for awhile. Other than

normal once in awhile headaches. But the ones she had been havng are all

gone

for more than a year, almost two years now. >>

OH Gee, I really don't want any more Pred. NO! NO! NO!

Okay I was just having a little protest here! LOL I know if it comes to that

I will...... but I don't have to like it.LOL

Thank you all,

I love you

Lu

[Guest guest]

In a message dated 1/20/2000 7:16:49 AM Pacific Standard Time, Lu1953@...

writes:

<<

They had tried TMJ as a cause also. But that didnt help any either.

Roy

>>

what did they finally do? >>

They increased her prednisone. the headaches stopped immediately, then they

started her on imuran and decreased the imuran. It is working.

[Guest guest]

In a message dated 1/20/2000 7:20:44 AM Pacific Standard Time, Lu1953@...

writes:

<< OH Gee, I really don't want any more Pred. NO! NO! NO!

Okay I was just having a little protest here! LOL I know if it comes to that

I will...... but I don't have to like it.LOL >>

The reaction to the increased dose of prednisone was an over night one. The

result was very pronounced and immediate. She wasnt on an increased dose for

too long. They started the imuran and with the combination they were able to

lower her pred down to around 5.

[Guest guest]

In a message dated 01/20/2000 6:36:24 PM Central Standard Time,

Rlr1999@... writes:

<< Roy

>>

what did they finally do? >>

They increased her prednisone. the headaches stopped immediately, then

they

started her on imuran and decreased the imuran. It is working.

>>

no more headaches at all? Roy, where on her head did she hurt? Thanks!

Lu

[Guest guest]

In a message dated 01/20/2000 6:39:00 PM Central Standard Time,

Rlr1999@... writes:

<< OH Gee, I really don't want any more Pred. NO! NO! NO!

Okay I was just having a little protest here! LOL I know if it comes to

that

I will...... but I don't have to like it.LOL >>

The reaction to the increased dose of prednisone was an over night one. The

result was very pronounced and immediate. She wasnt on an increased dose

for

too long. They started the imuran and with the combination they were able to

lower her pred down to around 5.

>>

how much did they give her???? I forgot????

[Guest guest]

In a message dated 1/20/2000 5:18:25 PM Pacific Standard Time, Lu1953@...

writes:

<< how much did they give her???? I forgot??? >>

It seems like they went to 20 or 25. I dont think much higher. Within a

month she was back to 15. Then gradually lowered it after that.

Roy

[Guest guest]

In a message dated 1/20/2000 5:18:26 PM Pacific Standard Time, Lu1953@...

writes:

<< no more headaches at all? Roy, where on her head did she hurt? >>

No more of those kind of headaches. They would start in her temples and the

side of her head would hurt, behind her ear and down her neck.

R

[Guest guest]

In a message dated 01/20/2000 7:27:18 PM Central Standard Time,

Rlr1999@... writes:

<< No more of those kind of headaches. They would start in her temples and

the

side of her head would hurt, behind her ear and down her neck. >>

OH no Roy, that sounds exactly like my headaches......BooHoo

Lu

[Guest guest]

In a message dated 1/20/2000 7:30:29 PM Pacific Standard Time, Lu1953@...

writes:

<< OH no Roy, that sounds exactly like my headaches......BooHoo

Lu

>>

had hers for at least 6 months, nothing helped. Till the pred, then

it knocked it right away.

R