Update

[Guest guest]

Hi -

I was on Colchicine for one month and was taken off so I don't know if it

helped me or not. I am currently on 20mg of Metho, injection sub q which

means I have to get it in the hip (or intramuscular) so the nurse has to give

it to me. I supply the Metho and they just shoot me once aweek; per day I am

on 25mg of vioxx, 60mg of pred, 50-100mg of demoral as needed (4-6 hours

ususally, sometimes every 2-3) for pain, drops for my ears prn, gel for my

eyes prn, 800mg of cimetidine 2 xday; gosh, the list goes on and on! Not

counting my pain meds, I take 20 pills in the morn and 6 at night.

Before a flare in my upper body, I too get allergy like symptoms - eyes heavy

and red, head feels like it is going to explode and the pressure in my ears

is incredible! - I have been without my voice for quite some time now, and

I have trouble breathing. Here lately, I have begun choking, to the point of

gagging and placing ice bags on my throat and chest to reduce the swelling.

I've also begun to get bruises and/or blood blisters on my body in the

strangest places - like the palm of my hand.

Enough about me -- and I hope it helped some. It has been along time since I

have been in comunication with the group and I am rambling on..........

Happy New Year and God Bless!

L. in OK : )

[Guest guest]

Hi -

I was on Colchicine for one month and was taken off so I don't know if it

helped me or not. I am currently on 20mg of Metho, injection sub q which

means I have to get it in the hip (or intramuscular) so the nurse has to give

it to me. I supply the Metho and they just shoot me once aweek; per day I am

on 25mg of vioxx, 60mg of pred, 50-100mg of demoral as needed (4-6 hours

ususally, sometimes every 2-3) for pain, drops for my ears prn, gel for my

eyes prn, 800mg of cimetidine 2 xday; gosh, the list goes on and on! Not

counting my pain meds, I take 20 pills in the morn and 6 at night.

Before a flare in my upper body, I too get allergy like symptoms - eyes heavy

and red, head feels like it is going to explode and the pressure in my ears

is incredible! - I have been without my voice for quite some time now, and

I have trouble breathing. Here lately, I have begun choking, to the point of

gagging and placing ice bags on my throat and chest to reduce the swelling.

I've also begun to get bruises and/or blood blisters on my body in the

strangest places - like the palm of my hand.

Enough about me -- and I hope it helped some. It has been along time since I

have been in comunication with the group and I am rambling on..........

Happy New Year and God Bless!

L. in OK : )

[Guest guest]

, It's good to hear you sound optimistic. Keep your faith in God and

you will win. I believe it was Janet who said she believed in " what goes

around, comes around " . I'm a firm believer in that and my hubby is quite

often quoting that phrase. His day will come! Don't wish anyone harm, but

I do believe in justice. He's asking for it. Hope your daughter is doing

well. Sure good to see you doing as well as you are amid all the stress.

BTW, what is the pulumonologist (?) doc's name? I believe there's one in

St. Pete and we were considering trying to see him at one time. Better stop

the " motor mouth " for now. So good to hear from you again and prayers are

definitely being sent for you.

Love and God Bless

Jo

Re: Update

>

>

>Hi everyone:

>

> here. I haven't had the whitish coating on the tongue but have had

severe

>sores on my tongue when on the pred. Really really painful. Have also

always

>been prone to sores on my gums.

>

>Anyone else in the group been able to try minocin pellets (form of

>tetracycline)? Dr.

>Trenthem didn't know if it would help but I really swear by it for the

arthritis

>pain

>and fibromyalgia. I can notice a distinct change in my body if I forget to

take

>it.

>I went to our yearly ophthalmology academy in October and couldn't find my

>medication.

>Within 24 hours I lost my voice and started developing a feeling of a lump

in my

>throat.

>Had to go to one of those quick care places to get Rx ASAP so I wouldn't

have to

>start

>pred. At least doc there just wrote scripts when he heard I had RP, think

he was

>glad I knew exactly what I needed.

>

>Just for the record here is what I am on. 3000mg Ibuprofen a dayor more if

>needed, 100mg Minocin pellets 2x's a day, Zantac 300mg 2x's a day, Ativan

0.5mg

>prn. Lo-Estrin once a day (for endometriosis) and Vicodin ES 2 x's a day.

>Consider myself lucky to be doing so well especially with all the stress in

my

>life. Have to take more Ibu if I start getting hoarse and losing my voice.

So

>far increasing Ibu seems to stop the throat problems without having to go

to

>Pred.

>

>I have tried Vioxx, Celebrex, Naprosyn, Aleve etc and none of them seem to

help

>my throat sx like the Ibuprofen. Anyone else out there have any similar

>experience?

>

>Do definately notice a pattern with big flare up that I start getting a

feeling

>like the flu,

>I will start to have allergy like symptoms, my eyes will start to feel

really dry

>and scratchy and then turn red. All seems to happen within an hour or so

and I

>take 1600mg of Ibu

>and pray. So far no restart on the pred. I can also tell slight shortness

of

>breath with

>symptoms sometimes but goes away within a couple of hours. If not, I

always

>carry my

>Pred with me just in case.

>

>I'm going to see the pulminologist Jan 4th who worked at Yale with RP

patients.

>He is

>the doc who really seems to know the most. Will ask him about the tongue

stuff

>and ask

>him for another pulminary function test. It's been about a year so I want

to

>make sure

>the RP isn't causing damage without my knowledge (seems respiratory system

can be

>

>destroyed without alot of sx).

>

>Any in the group been treated with Colchicine (sp?). I have heard that is

>helpful with

>Reynaud's sx and RP? Haven't tried it yet but still trying to gain all the

>knowledge I can.

>

>Shannin, how are your eyes and eyelid? I haven't been able to keep up

with

>postings

>so I have thought of you often. I am changing doctors I work for on Jan

10th and

>I will

>now be working with a corneal specialist. I didn't realize it when I

interviewed

>with him

>but he is internationally known for his work. He is moving to St.

sburg, FL

>after

>practicing for 20 years in Texas because his family is here. His brother

in town

>is a Pulminologist so guess I'll be able to pick their brain's once I get

to know

>them. I will

>definately try to find out the latest developements for dry eye sx and

Sjrogren's

>disease

>and as always, will be sure to fill you in. You'll probably get tired of

me

>posting anything

>I find out but all our information together is what really will help keep

us

>healthy.

>

>Thank you for all your prayers regarding my situation with Blain. Didn't

realize

>what evil

>was until now and I definately need them. It's so nice to have someone

talk

>positively

>to you when your so used to being worn down with bad and having someone

plotting

>evil against you. He has cost me dearly and I really feel that the daily

stress

>and treatment

>by him helped set my autoimmune sx into overdrive. Hopefully he will now

back

>off and

>leave Caitlin and I alone for good. He is so bent on destroying me though

that

>all prayers

>would be appreciated. Knowing there are wonderful people like you out

there is

>what helps me keep going during these horrible times.

>

>Happy New Year to all and God Bless for all your love and support.

>

>

>

>

>> > hi and welcome. maybe we can come up with answers that our doctors

can't

>

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

>

[Guest guest]

, Bless you! You are in my prayers. May the New Year be much better to

you.

Love and God Bless,

Jo

Re: Re: Update

>From: MLier325@...

>

>Hi -

>I was on Colchicine for one month and was taken off so I don't know if it

>helped me or not. I am currently on 20mg of Metho, injection sub q which

>means I have to get it in the hip (or intramuscular) so the nurse has to

give

>it to me. I supply the Metho and they just shoot me once aweek; per day I

am

>on 25mg of vioxx, 60mg of pred, 50-100mg of demoral as needed (4-6 hours

>ususally, sometimes every 2-3) for pain, drops for my ears prn, gel for my

>eyes prn, 800mg of cimetidine 2 xday; gosh, the list goes on and on! Not

>counting my pain meds, I take 20 pills in the morn and 6 at night.

>Before a flare in my upper body, I too get allergy like symptoms - eyes

heavy

>and red, head feels like it is going to explode and the pressure in my ears

>is incredible! - I have been without my voice for quite some time now,

and

>I have trouble breathing. Here lately, I have begun choking, to the point

of

>gagging and placing ice bags on my throat and chest to reduce the swelling.

>I've also begun to get bruises and/or blood blisters on my body in the

>strangest places - like the palm of my hand.

>Enough about me -- and I hope it helped some. It has been along time since

I

>have been in comunication with the group and I am rambling on..........

>Happy New Year and God Bless!

> L. in OK : )

>

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

>

[Guest guest]

In a message dated 01/01/2000 6:02:47 PM Eastern Standard Time,

hcf@... writes:

<< Colchicine >>

I was put on this colchicine and minocycline and klonapin a month ago

I know the colchinicine is a gout med, the minicycline is an antibiotic and

the kllonapin is an anti spasmatic why did you stop taking the colchinicine

after a month?

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]

I just read my pill bottles, I am on the minocyn pellets and the colchicine

only for two weeks so far. He gave me the minocyn for the fibro and I read

that is it sometimes also used for RA the colchicine is actua;lly a gout med

also used for inflammatory illness. He told me not to expect miracles from

either and that within 2 months I should notice some changes. I know the new

doc I see monday wanted me on the colchicine now to see if he keeps me on the

minocyn or what else he intends to change around. I lost your phone number

and address so please write me and send them again

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]

Jo:

Dr. Silverstein is the pulminologist in St. sburg, FL. He is

absolutely terrific.

You are welcome to stay with me if you need a place or I can try to find a place

for you

if you'd rather get a room somewhere. Can get you directions or anything you

need.

Please feel free to call . He is really great.

hcf wrote:

>

>

> , It's good to hear you sound optimistic. Keep your faith in God and

> you will win. I believe it was Janet who said she believed in " what goes

> around, comes around " . I'm a firm believer in that and my hubby is quite

> often quoting that phrase. His day will come! Don't wish anyone harm, but

> I do believe in justice. He's asking for it. Hope your daughter is doing

> well. Sure good to see you doing as well as you are amid all the stress.

> BTW, what is the pulumonologist (?) doc's name? I believe there's one in

> St. Pete and we were considering trying to see him at one time. Better stop

> the " motor mouth " for now. So good to hear from you again and prayers are

> definitely being sent for you.

>

> Love and God Bless

> Jo

> Re: Update

>

> >

> >

> >Hi everyone:

> >

> > here. I haven't had the whitish coating on the tongue but have had

> severe

> >sores on my tongue when on the pred. Really really painful. Have also

> always

> >been prone to sores on my gums.

> >

> >Anyone else in the group been able to try minocin pellets (form of

> >tetracycline)? Dr.

> >Trenthem didn't know if it would help but I really swear by it for the

> arthritis

> >pain

> >and fibromyalgia. I can notice a distinct change in my body if I forget to

> take

> >it.

> >I went to our yearly ophthalmology academy in October and couldn't find my

> >medication.

> >Within 24 hours I lost my voice and started developing a feeling of a lump

> in my

> >throat.

> >Had to go to one of those quick care places to get Rx ASAP so I wouldn't

> have to

> >start

> >pred. At least doc there just wrote scripts when he heard I had RP, think

> he was

> >glad I knew exactly what I needed.

> >

> >Just for the record here is what I am on. 3000mg Ibuprofen a dayor more if

> >needed, 100mg Minocin pellets 2x's a day, Zantac 300mg 2x's a day, Ativan

> 0.5mg

> >prn. Lo-Estrin once a day (for endometriosis) and Vicodin ES 2 x's a day.

> >Consider myself lucky to be doing so well especially with all the stress in

> my

> >life. Have to take more Ibu if I start getting hoarse and losing my voice.

> So

> >far increasing Ibu seems to stop the throat problems without having to go

> to

> >Pred.

> >

> >I have tried Vioxx, Celebrex, Naprosyn, Aleve etc and none of them seem to

> help

> >my throat sx like the Ibuprofen. Anyone else out there have any similar

> >experience?

> >

> >Do definately notice a pattern with big flare up that I start getting a

> feeling

> >like the flu,

> >I will start to have allergy like symptoms, my eyes will start to feel

> really dry

> >and scratchy and then turn red. All seems to happen within an hour or so

> and I

> >take 1600mg of Ibu

> >and pray. So far no restart on the pred. I can also tell slight shortness

> of

> >breath with

> >symptoms sometimes but goes away within a couple of hours. If not, I

> always

> >carry my

> >Pred with me just in case.

> >

> >I'm going to see the pulminologist Jan 4th who worked at Yale with RP

> patients.

> >He is

> >the doc who really seems to know the most. Will ask him about the tongue

> stuff

> >and ask

> >him for another pulminary function test. It's been about a year so I want

> to

> >make sure

> >the RP isn't causing damage without my knowledge (seems respiratory system

> can be

> >

> >destroyed without alot of sx).

> >

> >Any in the group been treated with Colchicine (sp?). I have heard that is

> >helpful with

> >Reynaud's sx and RP? Haven't tried it yet but still trying to gain all the

> >knowledge I can.

> >

> >Shannin, how are your eyes and eyelid? I haven't been able to keep up

> with

> >postings

> >so I have thought of you often. I am changing doctors I work for on Jan

> 10th and

> >I will

> >now be working with a corneal specialist. I didn't realize it when I

> interviewed

> >with him

> >but he is internationally known for his work. He is moving to St.

> sburg, FL

> >after

> >practicing for 20 years in Texas because his family is here. His brother

> in town

> >is a Pulminologist so guess I'll be able to pick their brain's once I get

> to know

> >them. I will

> >definately try to find out the latest developements for dry eye sx and

> Sjrogren's

> >disease

> >and as always, will be sure to fill you in. You'll probably get tired of

> me

> >posting anything

> >I find out but all our information together is what really will help keep

> us

> >healthy.

> >

> >Thank you for all your prayers regarding my situation with Blain. Didn't

> realize

> >what evil

> >was until now and I definately need them. It's so nice to have someone

> talk

> >positively

> >to you when your so used to being worn down with bad and having someone

> plotting

> >evil against you. He has cost me dearly and I really feel that the daily

> stress

> >and treatment

> >by him helped set my autoimmune sx into overdrive. Hopefully he will now

> back

> >off and

> >leave Caitlin and I alone for good. He is so bent on destroying me though

> that

> >all prayers

> >would be appreciated. Knowing there are wonderful people like you out

> there is

> >what helps me keep going during these horrible times.

> >

> >Happy New Year to all and God Bless for all your love and support.

> >

> >

> >

> >

> >> > hi and welcome. maybe we can come up with answers that our doctors

> can't

> >

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

> >

>

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

[Guest guest]

Thanks a million!!!! He is the one I was sooooo impressed with. It was

last May or June when we tho't we were gonna have to go some place. So far,

all's well and don't need. Always afraid to let guard down for fear will

need help. At that time, we couldn't find anyone very familiar with RP.

The ones we were referred to as being so great proved not to know an blasted

thing. Thanlks for your offer and number. I'll keep it handy just in case.

In the meantime, dear, you concentrate on you, your beautiful daughter and

your problems. Just remember you are in my prayers and I'm interested in

you and you welfare. God bless you.

Love you,

Jo

Re: Update

>>

>> >

>> >

>> >Hi everyone:

>> >

>> > here. I haven't had the whitish coating on the tongue but have

had

>> severe

>> >sores on my tongue when on the pred. Really really painful. Have also

>> always

>> >been prone to sores on my gums.

>> >

>> >Anyone else in the group been able to try minocin pellets (form of

>> >tetracycline)? Dr.

>> >Trenthem didn't know if it would help but I really swear by it for the

>> arthritis

>> >pain

>> >and fibromyalgia. I can notice a distinct change in my body if I forget

to

>> take

>> >it.

>> >I went to our yearly ophthalmology academy in October and couldn't find

my

>> >medication.

>> >Within 24 hours I lost my voice and started developing a feeling of a

lump

>> in my

>> >throat.

>> >Had to go to one of those quick care places to get Rx ASAP so I wouldn't

>> have to

>> >start

>> >pred. At least doc there just wrote scripts when he heard I had RP,

think

>> he was

>> >glad I knew exactly what I needed.

>> >

>> >Just for the record here is what I am on. 3000mg Ibuprofen a dayor more

if

>> >needed, 100mg Minocin pellets 2x's a day, Zantac 300mg 2x's a day,

Ativan

>> 0.5mg

>> >prn. Lo-Estrin once a day (for endometriosis) and Vicodin ES 2 x's a

day.

>> >Consider myself lucky to be doing so well especially with all the stress

in

>> my

>> >life. Have to take more Ibu if I start getting hoarse and losing my

voice.

>> So

>> >far increasing Ibu seems to stop the throat problems without having to

go

>> to

>> >Pred.

>> >

>> >I have tried Vioxx, Celebrex, Naprosyn, Aleve etc and none of them seem

to

>> help

>> >my throat sx like the Ibuprofen. Anyone else out there have any similar

>> >experience?

>> >

>> >Do definately notice a pattern with big flare up that I start getting a

>> feeling

>> >like the flu,

>> >I will start to have allergy like symptoms, my eyes will start to feel

>> really dry

>> >and scratchy and then turn red. All seems to happen within an hour or

so

>> and I

>> >take 1600mg of Ibu

>> >and pray. So far no restart on the pred. I can also tell slight

shortness

>> of

>> >breath with

>> >symptoms sometimes but goes away within a couple of hours. If not, I

>> always

>> >carry my

>> >Pred with me just in case.

>> >

>> >I'm going to see the pulminologist Jan 4th who worked at Yale with RP

>> patients.

>> >He is

>> >the doc who really seems to know the most. Will ask him about the

tongue

>> stuff

>> >and ask

>> >him for another pulminary function test. It's been about a year so I

want

>> to

>> >make sure

>> >the RP isn't causing damage without my knowledge (seems respiratory

system

>> can be

>> >

>> >destroyed without alot of sx).

>> >

>> >Any in the group been treated with Colchicine (sp?). I have heard that

is

>> >helpful with

>> >Reynaud's sx and RP? Haven't tried it yet but still trying to gain all

the

>> >knowledge I can.

>> >

>> >Shannin, how are your eyes and eyelid? I haven't been able to keep up

>> with

>> >postings

>> >so I have thought of you often. I am changing doctors I work for on Jan

>> 10th and

>> >I will

>> >now be working with a corneal specialist. I didn't realize it when I

>> interviewed

>> >with him

>> >but he is internationally known for his work. He is moving to St.

>> sburg, FL

>> >after

>> >practicing for 20 years in Texas because his family is here. His

brother

>> in town

>> >is a Pulminologist so guess I'll be able to pick their brain's once I

get

>> to know

>> >them. I will

>> >definately try to find out the latest developements for dry eye sx and

>> Sjrogren's

>> >disease

>> >and as always, will be sure to fill you in. You'll probably get tired

of

>> me

>> >posting anything

>> >I find out but all our information together is what really will help

keep

>> us

>> >healthy.

>> >

>> >Thank you for all your prayers regarding my situation with Blain.

Didn't

>> realize

>> >what evil

>> >was until now and I definately need them. It's so nice to have someone

>> talk

>> >positively

>> >to you when your so used to being worn down with bad and having someone

>> plotting

>> >evil against you. He has cost me dearly and I really feel that the

daily

>> stress

>> >and treatment

>> >by him helped set my autoimmune sx into overdrive. Hopefully he will

now

>> back

>> >off and

>> >leave Caitlin and I alone for good. He is so bent on destroying me

though

>> that

>> >all prayers

>> >would be appreciated. Knowing there are wonderful people like you out

>> there is

>> >what helps me keep going during these horrible times.

>> >

>> >Happy New Year to all and God Bless for all your love and support.

>> >

>> >

>> >

>> >

>> >> > hi and welcome. maybe we can come up with answers that our doctors

>> can't

>> >

>> >>hi and welcome. maybe we can come up with answers that our doctors

can't

>> >

>>

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

[Guest guest]

Jo:

Thanks for your continued support. Your compassion for all of us is

inspirational.

Many a day your kind words help take the edge of some very difficult

times right now

for me.

Thanks seems so insignificant!

Hope your feeling ok,

> .

> The ones we were referred to as being so great proved not to know an

> blasted

> thing. Thanlks for your offer and number. I'll keep it handy just in

> case.

> In the meantime, dear, you concentrate on you, your beautiful daughter

> and

> your problems. Just remember you are in my prayers and I'm interested

> in

> you and you welfare. God bless you.

>

> Love you,

> Jo

> Re: Update

> >>

> >> >

> >> >

> >> >Hi everyone:

> >> >

> >> > here. I haven't had the whitish coating on the tongue but

> have

> had

> >> severe

> >> >sores on my tongue when on the pred. Really really painful.

> Have also

> >> always

> >> >been prone to sores on my gums.

> >> >

> >> >Anyone else in the group been able to try minocin pellets (form of

>

> >> >tetracycline)? Dr.

> >> >Trenthem didn't know if it would help but I really swear by it for

> the

> >> arthritis

> >> >pain

> >> >and fibromyalgia. I can notice a distinct change in my body if I

> forget

> to

> >> take

> >> >it.

> >> >I went to our yearly ophthalmology academy in October and couldn't

> find

> my

> >> >medication.

> >> >Within 24 hours I lost my voice and started developing a feeling

> of a

> lump

> >> in my

> >> >throat.

> >> >Had to go to one of those quick care places to get Rx ASAP so I

> wouldn't

> >> have to

> >> >start

> >> >pred. At least doc there just wrote scripts when he heard I had

> RP,

> think

> >> he was

> >> >glad I knew exactly what I needed.

> >> >

> >> >Just for the record here is what I am on. 3000mg Ibuprofen a

> dayor more

> if

> >> >needed, 100mg Minocin pellets 2x's a day, Zantac 300mg 2x's a day,

>

> Ativan

> >> 0.5mg

> >> >prn. Lo-Estrin once a day (for endometriosis) and Vicodin ES 2 x's

> a

> day.

> >> >Consider myself lucky to be doing so well especially with all the

> stress

> in

> >> my

> >> >life. Have to take more Ibu if I start getting hoarse and losing

> my

> voice.

> >> So

> >> >far increasing Ibu seems to stop the throat problems without

> having to

> go

> >> to

> >> >Pred.

> >> >

> >> >I have tried Vioxx, Celebrex, Naprosyn, Aleve etc and none of them

> seem

> to

> >> help

> >> >my throat sx like the Ibuprofen. Anyone else out there have any

> similar

> >> >experience?

> >> >

> >> >Do definately notice a pattern with big flare up that I start

> getting a

> >> feeling

> >> >like the flu,

> >> >I will start to have allergy like symptoms, my eyes will start to

> feel

> >> really dry

> >> >and scratchy and then turn red. All seems to happen within an

> hour or

> so

> >> and I

> >> >take 1600mg of Ibu

> >> >and pray. So far no restart on the pred. I can also tell slight

> shortness

> >> of

> >> >breath with

> >> >symptoms sometimes but goes away within a couple of hours. If

> not, I

> >> always

> >> >carry my

> >> >Pred with me just in case.

> >> >

> >> >I'm going to see the pulminologist Jan 4th who worked at Yale with

> RP

> >> patients.

> >> >He is

> >> >the doc who really seems to know the most. Will ask him about the

>

> tongue

> >> stuff

> >> >and ask

> >> >him for another pulminary function test. It's been about a year

> so I

> want

> >> to

> >> >make sure

> >> >the RP isn't causing damage without my knowledge (seems

> respiratory

> system

> >> can be

> >> >

> >> >destroyed without alot of sx).

> >> >

> >> >Any in the group been treated with Colchicine (sp?). I have heard

> that

> is

> >> >helpful with

> >> >Reynaud's sx and RP? Haven't tried it yet but still trying to

> gain all

> the

> >> >knowledge I can.

> >> >

> >> >Shannin, how are your eyes and eyelid? I haven't been able to

> keep up

> >> with

> >> >postings

> >> >so I have thought of you often. I am changing doctors I work for

> on Jan

> >> 10th and

> >> >I will

> >> >now be working with a corneal specialist. I didn't realize it

> when I

> >> interviewed

> >> >with him

> >> >but he is internationally known for his work. He is moving to St.

>

> >> sburg, FL

> >> >after

> >> >practicing for 20 years in Texas because his family is here. His

> brother

> >> in town

> >> >is a Pulminologist so guess I'll be able to pick their brain's

> once I

> get

> >> to know

> >> >them. I will

> >> >definately try to find out the latest developements for dry eye sx

> and

> >> Sjrogren's

> >> >disease

> >> >and as always, will be sure to fill you in. You'll probably get

> tired

> of

> >> me

> >> >posting anything

> >> >I find out but all our information together is what really will

> help

> keep

> >> us

> >> >healthy.

> >> >

> >> >Thank you for all your prayers regarding my situation with Blain.

> Didn't

> >> realize

> >> >what evil

> >> >was until now and I definately need them. It's so nice to have

> someone

> >> talk

> >> >positively

> >> >to you when your so used to being worn down with bad and having

> someone

> >> plotting

> >> >evil against you. He has cost me dearly and I really feel that

> the

> daily

> >> stress

> >> >and treatment

> >> >by him helped set my autoimmune sx into overdrive. Hopefully he

> will

> now

> >> back

> >> >off and

> >> >leave Caitlin and I alone for good. He is so bent on destroying

> me

> though

> >> that

> >> >all prayers

> >> >would be appreciated. Knowing there are wonderful people like you

> out

> >> there is

> >> >what helps me keep going during these horrible times.

> >> >

> >> >Happy New Year to all and God Bless for all your love and support.

>

> >> >

> >> >

> >> >

> >> >

> >> >> > hi and welcome. maybe we can come up with answers that our

> doctors

> >> can't

> >> >

> >> >>hi and welcome. maybe we can come up with answers that our

> doctors

> can't

> >> >

> >>

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

[Guest guest]

, thanks for the kind words, however, I don't deserve. Pray things will

work out for you soon. Yes, thank you, I'm doing well and love you.

Re: Update

>>

>> >

>> >

>> >Hi everyone:

>> >

>> > here. I haven't had the whitish coating on the tongue but

have

had

>> severe

>> >sores on my tongue when on the pred. Really really painful. Have

also

>> always

>> >been prone to sores on my gums.

>> >

>> >Anyone else in the group been able to try minocin pellets (form of

>> >tetracycline)? Dr.

>> >Trenthem didn't know if it would help but I really swear by it for

the

>> arthritis

>> >pain

>> >and fibromyalgia. I can notice a distinct change in my body if I

forget

to

>> take

>> >it.

>> >I went to our yearly ophthalmology academy in October and couldn't

find

my

>> >medication.

>> >Within 24 hours I lost my voice and started developing a feeling of

a

lump

>> in my

>> >throat.

>> >Had to go to one of those quick care places to get Rx ASAP so I

wouldn't

>> have to

>> >start

>> >pred. At least doc there just wrote scripts when he heard I had RP,

think

>> he was

>> >glad I knew exactly what I needed.

>> >

>> >Just for the record here is what I am on. 3000mg Ibuprofen a dayor

more

if

>> >needed, 100mg Minocin pellets 2x's a day, Zantac 300mg 2x's a day,

Ativan

>> 0.5mg

>> >prn. Lo-Estrin once a day (for endometriosis) and Vicodin ES 2 x's a

day.

>> >Consider myself lucky to be doing so well especially with all the

stress

in

>> my

>> >life. Have to take more Ibu if I start getting hoarse and losing my

voice.

>> So

>> >far increasing Ibu seems to stop the throat problems without having

to

go

>> to

>> >Pred.

>> >

>> >I have tried Vioxx, Celebrex, Naprosyn, Aleve etc and none of them

seem

to

>> help

>> >my throat sx like the Ibuprofen. Anyone else out there have any

similar

>> >experience?

>> >

>> >Do definately notice a pattern with big flare up that I start

getting a

>> feeling

>> >like the flu,

>> >I will start to have allergy like symptoms, my eyes will start to

feel

>> really dry

>> >and scratchy and then turn red. All seems to happen within an hour

or

so

>> and I

>> >take 1600mg of Ibu

>> >and pray. So far no restart on the pred. I can also tell slight

shortness

>> of

>> >breath with

>> >symptoms sometimes but goes away within a couple of hours. If not,

I

>> always

>> >carry my

>> >Pred with me just in case.

>> >

>> >I'm going to see the pulminologist Jan 4th who worked at Yale with

RP

>> patients.

>> >He is

>> >the doc who really seems to know the most. Will ask him about the

tongue

>> stuff

>> >and ask

>> >him for another pulminary function test. It's been about a year so

I

want

>> to

>> >make sure

>> >the RP isn't causing damage without my knowledge (seems respiratory

system

>> can be

>> >

>> >destroyed without alot of sx).

>> >

>> >Any in the group been treated with Colchicine (sp?). I have heard

that

is

>> >helpful with

>> >Reynaud's sx and RP? Haven't tried it yet but still trying to gain

all

the

>> >knowledge I can.

>> >

>> >Shannin, how are your eyes and eyelid? I haven't been able to keep

up

>> with

>> >postings

>> >so I have thought of you often. I am changing doctors I work for on

Jan

>> 10th and

>> >I will

>> >now be working with a corneal specialist. I didn't realize it when

I

>> interviewed

>> >with him

>> >but he is internationally known for his work. He is moving to St.

>> sburg, FL

>> >after

>> >practicing for 20 years in Texas because his family is here. His

brother

>> in town

>> >is a Pulminologist so guess I'll be able to pick their brain's once

I

get

>> to know

>> >them. I will

>> >definately try to find out the latest developements for dry eye sx

and

>> Sjrogren's

>> >disease

>> >and as always, will be sure to fill you in. You'll probably get

tired

of

>> me

>> >posting anything

>> >I find out but all our information together is what really will help

keep

>> us

>> >healthy.

>> >

>> >Thank you for all your prayers regarding my situation with Blain.

Didn't

>> realize

>> >what evil

>> >was until now and I definately need them. It's so nice to have

someone

>> talk

>> >positively

>> >to you when your so used to being worn down with bad and having

someone

>> plotting

>> >evil against you. He has cost me dearly and I really feel that the

daily

>> stress

>> >and treatment

>> >by him helped set my autoimmune sx into overdrive. Hopefully he

will

now

>> back

>> >off and

>> >leave Caitlin and I alone for good. He is so bent on destroying me

though

>> that

>> >all prayers

>> >would be appreciated. Knowing there are wonderful people like you

out

>> there is

>> >what helps me keep going during these horrible times.

>> >

>> >Happy New Year to all and God Bless for all your love and support.

>> >

>> >

>> >

>> >

>> >> > hi and welcome. maybe we can come up with answers that our

doctors

>> can't

>> >

>> >>hi and welcome. maybe we can come up with answers that our doctors

can't

>> >

>>

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

[Guest guest]

Hi ,

I know how frustrating that is because until I started having severe,

consistent pain, and my doctor said my hurting in my stomach area had to be

related to IBS. It seems whenever one has a history of other digestive

problems, it's easier for the physicians to blame all your symptoms on that

rather than checking out other possibilities. I also kept telling the

doctor that the hurt/pain was the same as when I had Pancreatitis. I don't

know what part of that statement he didn't understand.

I'm really sorry you're having this problem and hope you feel better real

soon.

I'll say a little prayer for you and all the other members of this group.

Lately, you all have become my closest friends.

Carole

[Guest guest]

In a message dated 10/04/2000 5:52:32 PM Eastern Daylight Time,

loggiekw@... writes:

<< I tried not eating all day yesterday just to see if it would make the

pain go away. I couldn't tell any difference - it was still there all day

long even though I only had water.

More to follow, I'm sure!

>>

Hi ! Bless your heart!!! I hope you start feeling better soon.

Hugs,

[Guest guest]

Shirley,

I am not so sure that I trust what they say when it comes to much of anything

anymore. I have had so many situations where the doctors said all was well and

it turned out you find out a few days, weeks, months later that all was not

well! So far for me and my family, none of the wrong info given in these

situations have resulted in a death or anything majorly life altering so far,

but several of the situations could have.

I know something is not right with my body and I am not going to give up until

someone gives me some answers. I realize that it may be likely that there is

nothing that can be done to " cure " whatever is going on. However, what if I

just listen to the doctors, sit back and do the best job I can to simply ignore

what's going on with me and then I find out down the road something could have

been prevented if they had only diagnosed the problem sooner.

I hope my pancreas is fine, also. Even kidney disease sounds better than

pancreatitis. After all, I have two kidneys and so far there is absolutely no

blockage to the left kidney. However, I definitely had acute pancreatitis once.

Something caused me to have it. Despite the fact that two doctors have " fixed "

my problem, I am still not well. Much better than I have been, but not well by

any means! The people that I have talked to that have had only one attack of

acute pancreatitis and never had any more problems are people who still had

their gallbladder in when they had the first attack. Their gallbladder was

removed at the time of the first attack and after a month or so, they are fine

and never have a problem again. The first GI told me that my gallbladder most

likely damaged the pancreas prior to being removed in 98. Of course, he " fixed "

my problem with a papillotomy in March. As far as I know, you cannot " fix " a

damaged pancreas. I believe that it is entirely !

possible that my pancreas has so

me minor damage that has just not reached the point that the damage can be seen

even in an ERCP. The doctor " pooh, poohs " that idea away.

I had laproscopic surgery in Sep 90 and again in Nov 91 to remove ovarion scar

tissue. Both times, the doctor (two different doctors) said my appendix and

gallbladder looked very healthy. In March, 93 I had a hysterectomy and

appendectomy. The doctor said the appendix was in such bad shape he couldn't

believe it had not ruptured. It said it had to have been diseased for at least

2 years for it to have been in the shape it was in. I had suffered with lower

right side pain, fever, nausea off and on since 1988. The doctors always

attributed it to female problems or stress. In May, 92, I went to the doctor

with severe pain, fever, nausea. Even though my white count was elevated, the

doctor attributed it to stress and I believed him. After my hysterectomy, I

vowed that I would listen to my body from now on.

I think there are classic symptoms for any disorder. When you have the clasic

symptoms, it is easy for doctors to diagnose. However, the many people may not

present with classic symptoms - especially in the early stages of a disease or

disorder.

If, ten years from now, my pancreas is still not showing visible signs of damage

I will then believe their is some other unexplainable reason for my pain. Until

that time, I am going to keep searching for a reason that makes some kind of

sense to me.

I've really rambled on in this one. I could have gone on forever giving

examples of doctors missing problems.

[Guest guest]

Carole,

thank you for your kind note. It is so very frustrating when you feel like the

doctors are just feeding you a line of crap. I do believe I have IBS or spastic

colon or whatever the term of the day is. I have not been able to eat lettuce

off of a salad bar ever without being in the bathroom with horrible cramps and

diarhea. (Suprisingly, lettuce that's not on a salad bar causes no problem.)

If I eat a lot of beef or pork this can also happen. When this does happen, the

medicine for IBS works fantastic to minimize/stop the discomfort. However, this

same med does nothing for the panc area pain.

I'm hanging in there. I'm at work right now. I've actually not missed any work

since Sep 19th! That may be a record for this year!

[Guest guest]

In a message dated 10/5/00 6:02:57 PM Eastern Daylight Time, loggiekw@...

writes:

<<

If, ten years from now, my pancreas is still not showing visible signs of

damage I will then believe their is some other unexplainable reason for my

pain. Until that time, I am going to keep searching for a reason that makes

some kind of sense to me.

I've really rambled on in this one. I could have gone on forever giving

examples of doctors missing problems.

>>

Dear I agree and understand everything you say. Just be careful not to

let them get too invasive. I have been damaged so badly from stents. Now I

am forced to have a very risky surgery. The doctors don't agree on the type

of surgery I should have either. I sure can hear your frustration and I know

how you feel. Doctors don't know very much about the pancreas. When I first

became ill with my pancreas I went from doctor to doctor to no avail. Like

you I was diagnosed as stress or mental when I knew all the time that it was

my pancreas. Finally I agreed in my desperation to have ercps and stents.

That's when my constant pain without raised amalaze and lipase with sky high

with terrible pain. Because I got invasive procedures done to find a cause

for my pain I now have chronic panc. Due to my body starving for over six

years plus so many surgeries and medicines to try to help I am now so much

worse. What I am trying to tell you is in your search which you have

to pursue, be careful who you let do invasive procedures or the type of

procedures on you. I went to the so called best panc doctor and he did not

help me he only made me worse. I am sorry if this sounds so discouraging but

it is not meant to be that way. I only want you to choose carefully and be

conservative. As I tell you to be conservative I am approaching the biggest

surgery of my life. I am to the point that I cannot live this way any longer

and I am willing to take a chance. I am so scared but I know if I continue

to live as I have been living it is going to kill me anyway and I will

continue to have no quality of life. Taking the risk of the pancreatectomy

and islet cell transplant gives me a chance to eat, walk, stand, and have no

pain. I guess everyone has to come to the point in life when they know they

just can't live with it anymore. I am there.

I only hope and pray for the best for you . For sure, you have suffered

so very much from many things and continue to suffer. I can hear the

frustration, the cry for something to be done to diagnose you and to help

you. I am so sorry for you. I know what it feels like to be there because I

have been there first with hepatitis since 1974, which never got better.

Then pancreatitis in 1985. Then cancer in 1993. The chronic pancreatitis

has been the worst. Yes, even worst than cancer.

I am so sorry for your pain and frustrations. I wish I could do

something for you. I wish we all lived closer and could meet personally to

comfort one another. We all need that so much. Love, Shirley

[Guest guest]

In a message dated 10/5/00 6:09:50 PM Eastern Daylight Time, loggiekw@...

writes:

<< I have not been able to eat lettuce off of a salad bar ever without being

in the bathroom with horrible cramps and diarhea. (Suprisingly, lettuce

that's not on a salad bar causes no problem.) >>

Hi , maybe restaurants are spraying something that doesn't agree with

you on there lettuce. Just a thought. Shirley

[Guest guest]

Hi ,

I know what you mean. I rarely go out to eat anymore because it seems

whenever I eat food that the restaurants prepare (not just lettuce), within

30-45 minutes, I'm in the bathroom (no fun eating out). The food I prepare at

home doesn't do me that way so I believe Shirley may be right...it just may

be what they put in their food to keep it fresh. Things that I don't add to

my food at home.

I don't work so I really feel for you and all the other members in this group

who are struggling to have good health or just a day without pain! I'm still

waiting for my doctor to return my call after one week. Think he's forgot

about me? He probably has other patients he knows how to treat, whereas, I

seem to be a puzzle.

, what does your doctor give you for IBS? The only thing mine has given

me is Pepcid and Librax. He tried me on an antidepressant but it made me

feel worse than I did (couldn't keep my eyes open).

Hang in there, . Hopefully, the doctors will realize we know the

difference between pain with IBS and pain with Pancreatitis.

Carole

[Guest guest]

In a message dated 10/6/00 7:36:41 AM Eastern Daylight Time,

spets@... writes:

<< Whatever it is - I just know to stay away from lettuce at all salad bars.

>>

Interesting aspect of Panc. that seems to be shared by several posters of

this board. I just wanted to comment that there may also be some chemicals

that are used in growing the lettuce and/or others that could be used in

cleaning and shipping it. I wonder if there is some common allergic reaction

associated with a chemical used with agriculture. Another thought, I don't

have any problem with lettuce but I stay away from Mcs as I seem to

have a reaction from their food while billions of folks eat there each day.

[Guest guest]

Shirley,

I do sometimes have the kind of stools you talked about - somewhat ribbon

looking. However, the viokase has really helped a lot with that. Other

things that help me are eating a lot of fiber, but since your daughter cannot

handle roughage, don't know if that would be good. Also making sure I drink

plenty of water helps. Luckily, I have very little pain from IBS anymore.

I went to the doctor today because I thought I might have another UTI/kidney

infection. Sure enough, I do. Talked to the rheumie today and he said the

renal artery stenosis needs to be treated a little more agressively because

of my lupus. I am still feeling good but my back has been hurting more. May

be from the kidney infection. I'm on cipro 500 mg twice a day for 7 days

this time. The 24 hour urine the family doc is doing is a cortisol level to

see if I have some endocrine type problems. I do have many of the symptoms

of some. Maybe by the end of next week I'll have some answers or at least

know more of what I don't have for now, anyway!

Hope everyone is doing well. I just took some cough med with codiene because

the doc also said I've got a touch of bronchitis from the cold I had last

weekend - just can't quite shake the cough. I will probably be getting loopy

pretty soon.

Take care,

[Guest guest]

In a message dated 10/6/00 11:20:52 PM Eastern Daylight Time,

loggiekw@... writes:

<<

Shirley,

I do sometimes have the kind of stools you talked about - somewhat ribbon

looking. However, the viokase has really helped a lot with that. Other

things that help me are eating a lot of fiber, but since your daughter

cannot

handle roughage, don't know if that would be good. Also making sure I drink

plenty of water helps. Luckily, I have very little pain from IBS anymore.

I went to the doctor today because I thought I might have another UTI/kidney

infection. Sure enough, I do. Talked to the rheumie today and he said the

renal artery stenosis needs to be treated a little more agressively because

of my lupus. I am still feeling good but my back has been hurting more.

May

be from the kidney infection. I'm on cipro 500 mg twice a day for 7 days

this time. The 24 hour urine the family doc is doing is a cortisol level to

see if I have some endocrine type problems. I do have many of the symptoms

of some. Maybe by the end of next week I'll have some answers or at least

know more of what I don't have for now, anyway!

Hope everyone is doing well. I just took some cough med with codiene

because

the doc also said I've got a touch of bronchitis from the cold I had last

weekend - just can't quite shake the cough. I will probably be getting

loopy

pretty soon.

Take care,

>>

Dear , I will give my daughter some viokase to take. Maybe it will help

her. Thanks for the tip.

I am sorry that you have another kidney infection, and bronchitis. Hopefully

the doctor will find the cause of the kidney infections. I took cipro for 23

days with two other antibiotics when I had two blood infections. Please get

well soon . It would be wonderful if you didn't have pancreatitis.

Good luck, Shirley

[Guest guest]

I know something is not right with my body and I am not going to give up

until someone gives me

some answers. I realize that it may be likely that there is nothing

that can be done to "cure"

whatever is going on. However, what if I just listen to the doctors,

sit back and do the best

job I can to simply ignore what's going on with me and then I find

out down the road something

could have been prevented if they had only diagnosed the problem sooner.

,

My sentiments exactly, however, it is tiring.

Becky

[Guest guest]

Dear I agree and understand everything you say. Just be

careful not to

let them get too invasive. I have been damaged so badly from

stents. Now I

Shirley,

I REFUSE to let them do an ERCP on me for the exact reason. I have

been told that I am being a detriment to my own health. Well too

dang bad! I am doing everything I can to keep for ending up

like most people in this group!

Becky

[Guest guest]

In a message dated 10/20/00 12:57:26 PM Eastern Daylight Time,

pratt4_2001@... writes:

<<

Hello everyone!

I had a wonderful vacationa dn then when i got back

everything went hay wire. I was in the hospital here

for a week got out and couldn't eat they now have me

on morphine SR and Ir for pain after a week of not

eating i called iowa city talked to the doc there he

made me come up and have and ercp done which he

couldn't find anything and while he was in he put in a

ng tube. I was only supposed to have a can an hour on

the 3 hour drive home i vommited 3 tubes with nothing

going through the tube so the home health nurse here

called iowa and he decided that continouis would be

better so know i am hooked up to this stupid pump.

Has anyone else had one my mose and throat are very

sore does anyone else had one? I need to go i will

write more later.

Crystal

>>

Hi Crystal, yes I had one down my nose all the way into my intestines. It

made me so sick. I had to pull it out. Then I went to a surgeon and told

him that I wanted a j-tube put in my side so I could pump the liquid in that

way. He told me that if I got sick on the tube in my nose then I would get

sick on the liquid going into me from the j-tube also. I didn't listen, I

was so desperate. He did the surgery and I was so sick all the time. I

eventually pulled that out also. I hope your panc. settles down and you can

take it. Maybe if you just pump it a very slow rate it will not make you

sick. Good luck, Shirley

[Guest guest]

Dear Crystal,

I am glad to hear that you enjoyed your vacation. If only you didn't

have to come back to this! Are things going any better for you? I hope that

you have found some pain relief! Take care and let us know how you're doing

when you feel up to it.

[Guest guest]

>In a message dated 10/20/00 9:57:33 AM Pacific Daylight Time,

>pratt4_2001@... writes:

> I had a wonderful vacationa dn then when i got back

> everything went hay wire. I was in the hospital here

> for a week got out and couldn't eat they now have me

> on morphine SR and Ir for pain after a week of not

> eating i called iowa city talked to the doc there he

> made me come up and have and ercp done which he

> couldn't find anything and while he was in he put in a

> ng tube.

> i am hooked up to this stupid pump.

> Crystal

>Tam came home from the hospital tuesday and was feeling OK but by

>wednesday she started throwing up non-stop. I had to bring her to ER today and

they put her back in.

Your friends Tam & Steve

Crystal, Tammy, so sorry to hear you both are so ill again. You both certainly

have had more than your share. Hope y'all are feeling better.........

jang

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