Update, last Dr. Appointment.

[Guest guest]

Hi Everyone,

I just wanted to give a quick update to my last Dr. Appt. on Monday.

I saw Dr. Volcheck at the Mayo clinic. I really admire this man. He

is such a caring and kind person, and a great doctor. Status is

real good. I've been off of the prednisone now for almost 3 weeks.

Pain in the muscles and bone is still there but not as bad. Dr.

Volcheck said this could take up to six months to go away. I'm using

a little tylenol for the discomfort, and lots of hot baths and

swimming. Hot pad works good too. My blood suger is coming down and

I'm using less meds to control the diabetes induced by the prednisone.

I've been stuck at this weight for awhile, but once I can become more

active, I'm sure that will go as well. Blood Pressure is coming down

also.

Dr. Volcheck and I talked about the numbers of people that have been

using interferon for CIU. Quite a few now and the results are very

good. Many are now completely hive free. He believes that will be

the case for me as well given another 6 to 8 months of treatment and

then we should be able to taper the interferon. Anyway, it's a good

day, little bit of pain but not too bad. Heck, even my cholesterol

was below 200.

Terry

[Guest guest]

Terry,

I'm so glad things went well for you! You deserve a break! Hope things

continue to improve.........best wishes! Ann

>

>Reply-To: urticaria

>To: urticaria

>Subject: Update, last Dr. Appointment.

>Date: Wed, 19 Dec 2001 17:21:49 -0000

>

>Hi Everyone,

>I just wanted to give a quick update to my last Dr. Appt. on Monday.

>I saw Dr. Volcheck at the Mayo clinic. I really admire this man. He

>is such a caring and kind person, and a great doctor. Status is

>real good. I've been off of the prednisone now for almost 3 weeks.

>Pain in the muscles and bone is still there but not as bad. Dr.

>Volcheck said this could take up to six months to go away. I'm using

>a little tylenol for the discomfort, and lots of hot baths and

>swimming. Hot pad works good too. My blood suger is coming down and

>I'm using less meds to control the diabetes induced by the prednisone.

> I've been stuck at this weight for awhile, but once I can become more

>active, I'm sure that will go as well. Blood Pressure is coming down

>also.

>

>Dr. Volcheck and I talked about the numbers of people that have been

>using interferon for CIU. Quite a few now and the results are very

>good. Many are now completely hive free. He believes that will be

>the case for me as well given another 6 to 8 months of treatment and

>then we should be able to taper the interferon. Anyway, it's a good

>day, little bit of pain but not too bad. Heck, even my cholesterol

>was below 200.

>

>Terry

>

Ann

" I get by with a little help from my friends. "

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Terry,

I'm so glad things went well for you! You deserve a break! Hope things

continue to improve.........best wishes! Ann

>

>Reply-To: urticaria

>To: urticaria

>Subject: Update, last Dr. Appointment.

>Date: Wed, 19 Dec 2001 17:21:49 -0000

>

>Hi Everyone,

>I just wanted to give a quick update to my last Dr. Appt. on Monday.

>I saw Dr. Volcheck at the Mayo clinic. I really admire this man. He

>is such a caring and kind person, and a great doctor. Status is

>real good. I've been off of the prednisone now for almost 3 weeks.

>Pain in the muscles and bone is still there but not as bad. Dr.

>Volcheck said this could take up to six months to go away. I'm using

>a little tylenol for the discomfort, and lots of hot baths and

>swimming. Hot pad works good too. My blood suger is coming down and

>I'm using less meds to control the diabetes induced by the prednisone.

> I've been stuck at this weight for awhile, but once I can become more

>active, I'm sure that will go as well. Blood Pressure is coming down

>also.

>

>Dr. Volcheck and I talked about the numbers of people that have been

>using interferon for CIU. Quite a few now and the results are very

>good. Many are now completely hive free. He believes that will be

>the case for me as well given another 6 to 8 months of treatment and

>then we should be able to taper the interferon. Anyway, it's a good

>day, little bit of pain but not too bad. Heck, even my cholesterol

>was below 200.

>

>Terry

>

Ann

" I get by with a little help from my friends. "

_________________________________________________________________

MSN Photos is the easiest way to share and print your photos:

http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Hi Everyone..and Terry!

I am SO happy for you about being off the dreadnisone and the steroid

side-effects starting to resolve. This is such a major accomplishment...I

know how very difficult it is to go through the hell of steroid withdrawal

and tapering. I think it's awesome the interferon is workign for you as

well. Can you tell me more about Dr. Volcheck? What is his speciality? (I

assume he's on 15 west?!) Who are his nurses? I have been seeing Dr. Weiler

since Dr. Hunt left, but I'm losing faith in her, frankly. I feel like she's

starting to give up on me, as well.

I am really struggling.....not so much with CU but mostly because I've been

on 35 mg. of prednisone/day or higher since August. I have had three central

lines put in my chest for infusions I get, and all three got seriously

infected. UGH. I was up at Mayo for a week last week (I would love to call

you some time and maybe we could meet? I've been going at least every eight

weeks and this past time was for more work-up and i was there for a week).

Mostly, I've become pretty severely anemic and we dont' know where I " m losing

the blood. Has anyone else experienced internal bleeding/GI symptoms? I

have a ton of weird GI stuff, but the mayo work-up proved negative. I was

transfused two units of blood while I was there, and it helped, but already

my hemoglobin is starting to drop.

I stopped the interferon just b/c it was making me so sick and at this poitn,

my CU isn't flaring b/c of all the prednisone. But the plan is when I get to

a lower steorid dose and (IF) my CU starts to flare, I " ll restart it. I have

been feeling so hopeless....if mayo can't figure it out, who can?! For me,

it's the CU, lung involvement (severe asthma but it even falls outside the

parameters of " normal " for asthma) and then they think lupus or some other

autoimmune disease..but it's so hard to diagnose.

Anyway, sorry this is so long. I just wanted to congratulate you and let you

know I really DO know how major an accomplishment your geting off prednsione

is! Dr. Hunt was always so reassuring about the weight/diabetes/muscle aches

and paisn resolvign with time...so hang in there, my friend.

Take care....

Maddy

[Guest guest]

Hi Everyone..and Terry!

I am SO happy for you about being off the dreadnisone and the steroid

side-effects starting to resolve. This is such a major accomplishment...I

know how very difficult it is to go through the hell of steroid withdrawal

and tapering. I think it's awesome the interferon is workign for you as

well. Can you tell me more about Dr. Volcheck? What is his speciality? (I

assume he's on 15 west?!) Who are his nurses? I have been seeing Dr. Weiler

since Dr. Hunt left, but I'm losing faith in her, frankly. I feel like she's

starting to give up on me, as well.

I am really struggling.....not so much with CU but mostly because I've been

on 35 mg. of prednisone/day or higher since August. I have had three central

lines put in my chest for infusions I get, and all three got seriously

infected. UGH. I was up at Mayo for a week last week (I would love to call

you some time and maybe we could meet? I've been going at least every eight

weeks and this past time was for more work-up and i was there for a week).

Mostly, I've become pretty severely anemic and we dont' know where I " m losing

the blood. Has anyone else experienced internal bleeding/GI symptoms? I

have a ton of weird GI stuff, but the mayo work-up proved negative. I was

transfused two units of blood while I was there, and it helped, but already

my hemoglobin is starting to drop.

I stopped the interferon just b/c it was making me so sick and at this poitn,

my CU isn't flaring b/c of all the prednisone. But the plan is when I get to

a lower steorid dose and (IF) my CU starts to flare, I " ll restart it. I have

been feeling so hopeless....if mayo can't figure it out, who can?! For me,

it's the CU, lung involvement (severe asthma but it even falls outside the

parameters of " normal " for asthma) and then they think lupus or some other

autoimmune disease..but it's so hard to diagnose.

Anyway, sorry this is so long. I just wanted to congratulate you and let you

know I really DO know how major an accomplishment your geting off prednsione

is! Dr. Hunt was always so reassuring about the weight/diabetes/muscle aches

and paisn resolvign with time...so hang in there, my friend.

Take care....

Maddy

[Guest guest]

Hi Everyone..and Terry!

I am SO happy for you about being off the dreadnisone and the steroid

side-effects starting to resolve. This is such a major accomplishment...I

know how very difficult it is to go through the hell of steroid withdrawal

and tapering. I think it's awesome the interferon is workign for you as

well. Can you tell me more about Dr. Volcheck? What is his speciality? (I

assume he's on 15 west?!) Who are his nurses? I have been seeing Dr. Weiler

since Dr. Hunt left, but I'm losing faith in her, frankly. I feel like she's

starting to give up on me, as well.

I am really struggling.....not so much with CU but mostly because I've been

on 35 mg. of prednisone/day or higher since August. I have had three central

lines put in my chest for infusions I get, and all three got seriously

infected. UGH. I was up at Mayo for a week last week (I would love to call

you some time and maybe we could meet? I've been going at least every eight

weeks and this past time was for more work-up and i was there for a week).

Mostly, I've become pretty severely anemic and we dont' know where I " m losing

the blood. Has anyone else experienced internal bleeding/GI symptoms? I

have a ton of weird GI stuff, but the mayo work-up proved negative. I was

transfused two units of blood while I was there, and it helped, but already

my hemoglobin is starting to drop.

I stopped the interferon just b/c it was making me so sick and at this poitn,

my CU isn't flaring b/c of all the prednisone. But the plan is when I get to

a lower steorid dose and (IF) my CU starts to flare, I " ll restart it. I have

been feeling so hopeless....if mayo can't figure it out, who can?! For me,

it's the CU, lung involvement (severe asthma but it even falls outside the

parameters of " normal " for asthma) and then they think lupus or some other

autoimmune disease..but it's so hard to diagnose.

Anyway, sorry this is so long. I just wanted to congratulate you and let you

know I really DO know how major an accomplishment your geting off prednsione

is! Dr. Hunt was always so reassuring about the weight/diabetes/muscle aches

and paisn resolvign with time...so hang in there, my friend.

Take care....

Maddy

[Guest guest]

Terry,

So glad that you had a good report and things are looking up...It's

good to hear someone is having good news for a change...I wonder if

you keep a journal of what works and what doesn't, or if all of you

do..I have encouraged Ty to do this..don't know if he has...We have

a lot to discuss when he comes in tomorrow and thats one of

them...Hope you have a wonderful Christmas and continue to do

well..Merry Christmas...

Rita

> Hi Everyone,

> I just wanted to give a quick update to my last Dr. Appt. on Monday.

> I saw Dr. Volcheck at the Mayo clinic. I really admire this man.

He

> is such a caring and kind person, and a great doctor. Status is

> real good. I've been off of the prednisone now for almost 3 weeks.

> Pain in the muscles and bone is still there but not as bad. Dr.

> Volcheck said this could take up to six months to go away. I'm

using

> a little tylenol for the discomfort, and lots of hot baths and

> swimming. Hot pad works good too. My blood suger is coming down

and

> I'm using less meds to control the diabetes induced by the

prednisone.

> I've been stuck at this weight for awhile, but once I can become

more

> active, I'm sure that will go as well. Blood Pressure is coming

down

> also.

>

> Dr. Volcheck and I talked about the numbers of people that have been

> using interferon for CIU. Quite a few now and the results are very

> good. Many are now completely hive free. He believes that will be

> the case for me as well given another 6 to 8 months of treatment and

> then we should be able to taper the interferon. Anyway, it's a good

> day, little bit of pain but not too bad. Heck, even my cholesterol

> was below 200.

>

> Terry

[Guest guest]

Terry,

So glad that you had a good report and things are looking up...It's

good to hear someone is having good news for a change...I wonder if

you keep a journal of what works and what doesn't, or if all of you

do..I have encouraged Ty to do this..don't know if he has...We have

a lot to discuss when he comes in tomorrow and thats one of

them...Hope you have a wonderful Christmas and continue to do

well..Merry Christmas...

Rita

> Hi Everyone,

> I just wanted to give a quick update to my last Dr. Appt. on Monday.

> I saw Dr. Volcheck at the Mayo clinic. I really admire this man.

He

> is such a caring and kind person, and a great doctor. Status is

> real good. I've been off of the prednisone now for almost 3 weeks.

> Pain in the muscles and bone is still there but not as bad. Dr.

> Volcheck said this could take up to six months to go away. I'm

using

> a little tylenol for the discomfort, and lots of hot baths and

> swimming. Hot pad works good too. My blood suger is coming down

and

> I'm using less meds to control the diabetes induced by the

prednisone.

> I've been stuck at this weight for awhile, but once I can become

more

> active, I'm sure that will go as well. Blood Pressure is coming

down

> also.

>

> Dr. Volcheck and I talked about the numbers of people that have been

> using interferon for CIU. Quite a few now and the results are very

> good. Many are now completely hive free. He believes that will be

> the case for me as well given another 6 to 8 months of treatment and

> then we should be able to taper the interferon. Anyway, it's a good

> day, little bit of pain but not too bad. Heck, even my cholesterol

> was below 200.

>

> Terry

[Guest guest]

Hi Maddy,

It's really good to hear from you. I'm so sorry that things aren't

going so well for you. You bet! Let me know when you come and we can

get in touch with each other. Dr. Volcheck is in the same dept. as

Dr. Hunt was and Dr. Weiler is in. He has done CU research and was

recommended by Dr. Hunt. He does Asthma and Immunology. As an all

around Dr., he's really good. He examined my knee the other day

because of an injury, and made good recommends to me. He is very

caring about my over all health. However, I've heard that Dr. Weiler

is also very good. Unfortunately, some of the things we go through

with our health require to ride out the rough times. Sounds like

yours is really rough right now. Hang in there! Don't give up 'cause

your gonna beat this thing. I also think that Dr. Hunt may eventually

return to the clinic in the forseeable future. Just a hunch... but a

good one. Keep in touch often with the group, we can help you get

through...

Terry

> Hi Everyone..and Terry!

> I am SO happy for you about being off the dreadnisone and the

steroid

> side-effects starting to resolve. This is such a major

accomplishment...I

> know how very difficult it is to go through the hell of steroid

withdrawal

> and tapering. I think it's awesome the interferon is workign for

you as

> well. Can you tell me more about Dr. Volcheck? What is his

speciality? (I

> assume he's on 15 west?!) Who are his nurses? I have been seeing Dr.

Weiler

> since Dr. Hunt left, but I'm losing faith in her, frankly. I feel

like she's

> starting to give up on me, as well.

>

> I am really struggling.....not so much with CU but mostly because

I've been

> on 35 mg. of prednisone/day or higher since August. I have had

three central

> lines put in my chest for infusions I get, and all three got

seriously

> infected. UGH. I was up at Mayo for a week last week (I would love

to call

> you some time and maybe we could meet? I've been going at least

every eight

> weeks and this past time was for more work-up and i was there for a

week).

> Mostly, I've become pretty severely anemic and we dont' know where

I " m losing

> the blood. Has anyone else experienced internal bleeding/GI

symptoms? I

> have a ton of weird GI stuff, but the mayo work-up proved negative.

I was

> transfused two units of blood while I was there, and it helped, but

already

> my hemoglobin is starting to drop.

>

> I stopped the interferon just b/c it was making me so sick and at

this poitn,

> my CU isn't flaring b/c of all the prednisone. But the plan is when

I get to

> a lower steorid dose and (IF) my CU starts to flare, I " ll restart

it. I have

> been feeling so hopeless....if mayo can't figure it out, who can?!

For me,

> it's the CU, lung involvement (severe asthma but it even falls

outside the

> parameters of " normal " for asthma) and then they think lupus or some

other

> autoimmune disease..but it's so hard to diagnose.

>

> Anyway, sorry this is so long. I just wanted to congratulate you

and let you

> know I really DO know how major an accomplishment your geting off

prednsione

> is! Dr. Hunt was always so reassuring about the

weight/diabetes/muscle aches

> and paisn resolvign with time...so hang in there, my friend.

>

> Take care....

> Maddy

[Guest guest]

Hi Maddy,

It's really good to hear from you. I'm so sorry that things aren't

going so well for you. You bet! Let me know when you come and we can

get in touch with each other. Dr. Volcheck is in the same dept. as

Dr. Hunt was and Dr. Weiler is in. He has done CU research and was

recommended by Dr. Hunt. He does Asthma and Immunology. As an all

around Dr., he's really good. He examined my knee the other day

because of an injury, and made good recommends to me. He is very

caring about my over all health. However, I've heard that Dr. Weiler

is also very good. Unfortunately, some of the things we go through

with our health require to ride out the rough times. Sounds like

yours is really rough right now. Hang in there! Don't give up 'cause

your gonna beat this thing. I also think that Dr. Hunt may eventually

return to the clinic in the forseeable future. Just a hunch... but a

good one. Keep in touch often with the group, we can help you get

through...

Terry

> Hi Everyone..and Terry!

> I am SO happy for you about being off the dreadnisone and the

steroid

> side-effects starting to resolve. This is such a major

accomplishment...I

> know how very difficult it is to go through the hell of steroid

withdrawal

> and tapering. I think it's awesome the interferon is workign for

you as

> well. Can you tell me more about Dr. Volcheck? What is his

speciality? (I

> assume he's on 15 west?!) Who are his nurses? I have been seeing Dr.

Weiler

> since Dr. Hunt left, but I'm losing faith in her, frankly. I feel

like she's

> starting to give up on me, as well.

>

> I am really struggling.....not so much with CU but mostly because

I've been

> on 35 mg. of prednisone/day or higher since August. I have had

three central

> lines put in my chest for infusions I get, and all three got

seriously

> infected. UGH. I was up at Mayo for a week last week (I would love

to call

> you some time and maybe we could meet? I've been going at least

every eight

> weeks and this past time was for more work-up and i was there for a

week).

> Mostly, I've become pretty severely anemic and we dont' know where

I " m losing

> the blood. Has anyone else experienced internal bleeding/GI

symptoms? I

> have a ton of weird GI stuff, but the mayo work-up proved negative.

I was

> transfused two units of blood while I was there, and it helped, but

already

> my hemoglobin is starting to drop.

>

> I stopped the interferon just b/c it was making me so sick and at

this poitn,

> my CU isn't flaring b/c of all the prednisone. But the plan is when

I get to

> a lower steorid dose and (IF) my CU starts to flare, I " ll restart

it. I have

> been feeling so hopeless....if mayo can't figure it out, who can?!

For me,

> it's the CU, lung involvement (severe asthma but it even falls

outside the

> parameters of " normal " for asthma) and then they think lupus or some

other

> autoimmune disease..but it's so hard to diagnose.

>

> Anyway, sorry this is so long. I just wanted to congratulate you

and let you

> know I really DO know how major an accomplishment your geting off

prednsione

> is! Dr. Hunt was always so reassuring about the

weight/diabetes/muscle aches

> and paisn resolvign with time...so hang in there, my friend.

>

> Take care....

> Maddy

[Guest guest]

Hi Rita,

Thanks for the support. Yup, I keep a log of everything and get

copies of all my medical checkups. I could write a volumn of war and

peace on this whole journey of mine. Anyway, hope your family has a

great holiday, and make sure to give that grand baby a hug from Unca'

Terry in Mittensota. Oh, yeah.... I have a flag lapel pin that I need

to get to Ty....

Terry

> > Hi Everyone,

> > I just wanted to give a quick update to my last Dr. Appt. on

Monday.

>

> > I saw Dr. Volcheck at the Mayo clinic. I really admire this man.

> He

> > is such a caring and kind person, and a great doctor. Status is

> > real good. I've been off of the prednisone now for almost 3

weeks.

>

> > Pain in the muscles and bone is still there but not as bad. Dr.

> > Volcheck said this could take up to six months to go away. I'm

> using

> > a little tylenol for the discomfort, and lots of hot baths and

> > swimming. Hot pad works good too. My blood suger is coming down

> and

> > I'm using less meds to control the diabetes induced by the

> prednisone.

> > I've been stuck at this weight for awhile, but once I can become

> more

> > active, I'm sure that will go as well. Blood Pressure is coming

> down

> > also.

> >

> > Dr. Volcheck and I talked about the numbers of people that have

been

> > using interferon for CIU. Quite a few now and the results are

very

> > good. Many are now completely hive free. He believes that will

be

> > the case for me as well given another 6 to 8 months of treatment

and

> > then we should be able to taper the interferon. Anyway, it's a

good

> > day, little bit of pain but not too bad. Heck, even my

cholesterol

> > was below 200.

> >

> > Terry

[Guest guest]

Hi Rita,

Thanks for the support. Yup, I keep a log of everything and get

copies of all my medical checkups. I could write a volumn of war and

peace on this whole journey of mine. Anyway, hope your family has a

great holiday, and make sure to give that grand baby a hug from Unca'

Terry in Mittensota. Oh, yeah.... I have a flag lapel pin that I need

to get to Ty....

Terry

> > Hi Everyone,

> > I just wanted to give a quick update to my last Dr. Appt. on

Monday.

>

> > I saw Dr. Volcheck at the Mayo clinic. I really admire this man.

> He

> > is such a caring and kind person, and a great doctor. Status is

> > real good. I've been off of the prednisone now for almost 3

weeks.

>

> > Pain in the muscles and bone is still there but not as bad. Dr.

> > Volcheck said this could take up to six months to go away. I'm

> using

> > a little tylenol for the discomfort, and lots of hot baths and

> > swimming. Hot pad works good too. My blood suger is coming down

> and

> > I'm using less meds to control the diabetes induced by the

> prednisone.

> > I've been stuck at this weight for awhile, but once I can become

> more

> > active, I'm sure that will go as well. Blood Pressure is coming

> down

> > also.

> >

> > Dr. Volcheck and I talked about the numbers of people that have

been

> > using interferon for CIU. Quite a few now and the results are

very

> > good. Many are now completely hive free. He believes that will

be

> > the case for me as well given another 6 to 8 months of treatment

and

> > then we should be able to taper the interferon. Anyway, it's a

good

> > day, little bit of pain but not too bad. Heck, even my

cholesterol

> > was below 200.

> >

> > Terry