Re: I think I might be getting worse

[Guest guest]

Hi everyone,

VERY depressed the past week. Last week I was having a log of muscle

pain/weakness especially in my fingers which have also swelled up. It is so

difficult to even type - I am on Motrin all day long.I developed a low grade

fever which would come and go along with a rash on my face that would come and

go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg

for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood

tests checking for connective tissue disease that come back negative. I talked

to him on Tuesday and I have elevations in white count, platelets and liver

enzymes but he said it was slightly elevated and he thinks it is due to

prednisone(i'm on 10 mgs). What was really high was the SED rate and he just

can't understand with being on prednisone why it's so high. He also remarked

that I BARELY move and my SATS drop. I go from chair to exam table and go down

to high 80's. I can't even take a shower without O2(and that's an adventure

every morning)- I almost fainted without it.My SATS are even getting into the

70's when I walk no more than 20 feet without O2 or when I climb my flight of

stairs at home with portable O2 on 5LPM. My oximeter is telling me the same

info. PLUS last Friday Columbia called rescheduling my appt since the doc is not

available this week. Now I have to wait until Oct 16 but I have the feeling even

on the 16th it will just be filling out MORE paperwork. Maybe the setback is

because of URI? I don't know anymore! Thanks for letting me vent- sorry to

always be complaining.

nne, Ild 6/09

[Guest guest]

nne,

You're not complaining, you are sick!!! How long have you been on the zitromax? If it's more than three or four days you should be beginning to feel better. Since you're not I would call the doctor.

I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you definitely need that consult at Columbia. You need a full fledged work up for all this stuff.

Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!

Hugs,

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Fri, October 2, 2009 3:57:43 PMSubject: RE: I think I might be getting worse

Hi everyone,VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even

take a shower without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.nne, Ild 6/09

[Guest guest]

nne...listen to Beth she's very on the Ball with all of this... & she;s right you are NOT complaining..you are letting us know how it actually IS for you..we need to know our Air Family members are...otherwise how can we support you!

I do hope you get sorted quickly..keep up that O2..

Hugs,

in Oz>> nne,> You're not complaining, you are sick!!! How long have you been on the zitromax? If it's more than three or four days you should be beginning to feel better. Since you're not I would call the doctor. > I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you definitely need that consult at Columbia. You need a full fledged work up for all this stuff. > > Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!> > Hugs,> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ________________________________> To: Breathe-Support > Sent: Fri, October 2, 2009 3:57:43 PM> Subject: RE: I think I might be getting worse> > > Hi everyone,> VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even take a shower> without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.> nne, Ild 6/09>

[Guest guest]

What is an SED rate and what does it measure?

Subject: RE: I think I might be getting worseTo: Breathe-Support Date: Friday, October 2, 2009, 3:57 PM

Hi everyone,VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't

even take a shower without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.nne, Ild 6/09

[Guest guest]

Thanks for the kind words everyone! I was on Zithromax for 6 days, 500mgs per

day. It took the fever away but not the muscle pain and weakness. I think a

definition of the SED rate is the amount of inflamation in your blood and that

is an indicator of a connective tissue disease. One of the blood tests I had was

with a neurologist who said mine was barely elevated, it was 38, normal is 30.

That test was taken exactly a year ago with another test given to me by a

rheumatologist in Feb of this year. But for my pulmodude to say it was high (I

didn't even ask him what the number was- DUH!) it IS high and he cannot figure

out why because I'm taking prednisone. I just wish I had been able to get to

Columbia this past week. Also, the blood work I had the other two times came

back negative for rheumatoid arthritis. I have another question though. If I

have developed a connective tissue disease, then can I be a candidate for a

transplant? Isn't my body going to attack the new lungs as it attacked mine? So

MANY questions and not enough answers. I SO Thank God for this site- it's so

nice to get support for this disease. I just wish I knew why, even with my O2

for exertion, when I climb stairs- I really fall apart. Last night I said to my

husband that I was going to bed. A half hour later I was still sitting on the

couch. He said when are you going up and I said when I can get myself psyched up

for it-I was secretely wishing he could carry me up and I wouldn't have to go

thru it, but my prince has carpal tunnel and I am WAY too heavy!!LOL

nne, ILD 6/09

>

> nne,

> You're not complaining, you are sick!!! How long have you been on the

zitromax? If it's more than three or four days you should be beginning to feel

better. Since you're not I would call the doctor.

> I agree that an elevated sed rate when you're on pred is somewhat odd.  There

are more than three blood tests for connective tissue disease...you definitely

need that consult at Columbia. You need a full fledged work up for all this

stuff.

>

> Please try to rest and use as much oxygen as you need to keep your sats up.

Don't try to do without!

>

> Hugs,

>  

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>  

>  

>

>

>

>

> ________________________________

>

> To: Breathe-Support

> Sent: Fri, October 2, 2009 3:57:43 PM

> Subject: RE: I think I might be getting worse

>

>  

> Hi everyone,

> VERY depressed the past week. Last week I was having a log of muscle

pain/weakness especially in my fingers which have also swelled up. It is so

difficult to even type - I am on Motrin all day long.I developed a low grade

fever which would come and go along with a rash on my face that would come and

go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg

for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood

tests checking for connective tissue disease that come back negative. I talked

to him on Tuesday and I have elevations in white count, platelets and liver

enzymes but he said it was slightly elevated and he thinks it is due to

prednisone(i' m on 10 mgs). What was really high was the SED rate and he just

can't understand with being on prednisone why it's so high. He also remarked

that I BARELY move and my SATS drop. I go from chair to exam table and go down

to high 80's. I can't even take a shower

> without O2(and that's an adventure every morning)- I almost fainted without

it.My SATS are even getting into the 70's when I walk no more than 20 feet

without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM.

My oximeter is telling me the same info. PLUS last Friday Columbia called

rescheduling my appt since the doc is not available this week. Now I have to

wait until Oct 16 but I have the feeling even on the 16th it will just be

filling out MORE paperwork. Maybe the setback is because of URI? I don't know

anymore! Thanks for letting me vent- sorry to always be complaining.

> nne, Ild 6/09

>

[Guest guest]

nne,

The answer about transplant is, it depends. I have dermatomyositis an auto-immune connective tissue disease that causes muscle inflammation among other things. This by itself will not eliminate me from being a transplant candidate.

Some with multiple connective tissue diseases and other health problems are turned down just because their overall health makes them not strong enough to withstand the rigors of transplant. This is oversimplified but in a nutshell that's it.

Post transplant you will be on powerful immune suppressants for the rest of your life so you needn't worry about the auto immune disease attacking the new lungs.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, October 3, 2009 6:20:15 PMSubject: Re: I think I might be getting worse

Thanks for the kind words everyone! I was on Zithromax for 6 days, 500mgs per day. It took the fever away but not the muscle pain and weakness. I think a definition of the SED rate is the amount of inflamation in your blood and that is an indicator of a connective tissue disease. One of the blood tests I had was with a neurologist who said mine was barely elevated, it was 38, normal is 30. That test was taken exactly a year ago with another test given to me by a rheumatologist in Feb of this year. But for my pulmodude to say it was high (I didn't even ask him what the number was- DUH!) it IS high and he cannot figure out why because I'm taking prednisone. I just wish I had been able to get to Columbia this past week. Also, the blood work I had the other two times came back negative for rheumatoid arthritis. I have another question though. If I have developed a connective tissue disease, then can I be a candidate for a transplant? Isn't my body going

to attack the new lungs as it attacked mine? So MANY questions and not enough answers. I SO Thank God for this site- it's so nice to get support for this disease. I just wish I knew why, even with my O2 for exertion, when I climb stairs- I really fall apart. Last night I said to my husband that I was going to bed. A half hour later I was still sitting on the couch. He said when are you going up and I said when I can get myself psyched up for it-I was secretely wishing he could carry me up and I wouldn't have to go thru it, but my prince has carpal tunnel and I am WAY too heavy!!LOLnne, ILD 6/09>> nne,> You're not complaining, you are sick!!! How long have you been on the zitromax? If it's

more than three or four days you should be beginning to feel better. Since you're not I would call the doctor. > I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you definitely need that consult at Columbia. You need a full fledged work up for all this stuff. > > Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!> > Hugs,> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: teddyspenguins <teddyspenguins@ ...>> To: Breathe-Support@ yahoogroups.

com> Sent: Fri, October 2, 2009 3:57:43 PM> Subject: RE: I think I might be getting worse> > > Hi everyone,> VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand

with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even take a shower> without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.> nne, Ild 6/09>

[Guest guest]

Adrienne,

The sed rate or sedimentation rate measures how fast the red blood cells in a test tube of blood fall to the bottom of the test tube. The faster they do that the higher the sed rate is. A high sed rate indicates inflammation in the body. This can mean many things from the presence of an auto-immune disease to pregnancy. Generally for a woman under 50 a sed rate value of under 20 is considered normal, if you are older than 50, under 30 is considered normal.

In my experience it has to be more than 10 to 15 points above normal before the doctors start getting excited about it.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, October 3, 2009 5:43:09 PMSubject: Re: RE: I think I might be getting worse

What is an SED rate and what does it measure?

From: teddyspenguins <teddyspenguins@ yahoo.com>Subject: RE: I think I might be getting worseTo: Breathe-Support@ yahoogroups. comDate: Friday, October 2, 2009, 3:57 PM

Hi everyone,VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't

even take a shower without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.nne, Ild 6/09

[Guest guest]

nne

i can understand what you mean by not being able to go upstairs

i do not have to use the stairs at all in my present house

but there are days (sick days) when the one floor is too big -- the kitchen is too far, the bathroom is too far

think about bringing some stuff downstairs for those days when you can't go upstairs -- i am assuming you have a bathroom or powder room on the first floor --

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: I think I might be getting worseTo: Breathe-Support Date: Saturday, October 3, 2009, 6:20 PM

Thanks for the kind words everyone! I was on Zithromax for 6 days, 500mgs per day. It took the fever away but not the muscle pain and weakness. I think a definition of the SED rate is the amount of inflamation in your blood and that is an indicator of a connective tissue disease. One of the blood tests I had was with a neurologist who said mine was barely elevated, it was 38, normal is 30. That test was taken exactly a year ago with another test given to me by a rheumatologist in Feb of this year. But for my pulmodude to say it was high (I didn't even ask him what the number was- DUH!) it IS high and he cannot figure out why because I'm taking prednisone. I just wish I had been able to get to Columbia this past week. Also, the blood work I had the other two times came back negative for rheumatoid arthritis. I have another question though. If I have developed a connective tissue disease, then can I be a candidate for a transplant? Isn't my body going

to attack the new lungs as it attacked mine? So MANY questions and not enough answers. I SO Thank God for this site- it's so nice to get support for this disease. I just wish I knew why, even with my O2 for exertion, when I climb stairs- I really fall apart. Last night I said to my husband that I was going to bed. A half hour later I was still sitting on the couch. He said when are you going up and I said when I can get myself psyched up for it-I was secretely wishing he could carry me up and I wouldn't have to go thru it, but my prince has carpal tunnel and I am WAY too heavy!!LOLnne, ILD 6/09>> nne,> You're not complaining, you are sick!!! How long have

you been on the zitromax? If it's more than three or four days you should be beginning to feel better. Since you're not I would call the doctor. > I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you definitely need that consult at Columbia. You need a full fledged work up for all this stuff. > > Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!> > Hugs,> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > > > ____________ _________ _________ __> From: teddyspenguins <teddyspenguins@ ...>> To: Breathe-Support@ yahoogroups. com> Sent: Fri, October 2, 2009 3:57:43 PM> Subject: RE: I think I might be getting worse> > > Hi everyone,> VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m

on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even take a shower> without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week. Now I have to wait until Oct 16 but I have the feeling even on the 16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.> nne, Ild 6/09>

[Guest guest]

- You also have heart rate very high going up stairs? I don't know why but

it's comforting to know I'm not the only one. I grew up in a split level and it

was exhausting always going up and down when I had 2 functionning lungs so I

definitely feel your pain.

> > >

> > > nne,

> > > You're not complaining, you are sick!!! How long have you been on the

zitromax? If it's more than three or four days you should be beginning to feel

better. Since you're not I would call the doctor.

> > > I agree that an elevated sed rate when you're on pred is somewhat odd. 

There are more than three blood tests for connective tissue disease...you

definitely need that consult at Columbia. You need a full fledged work up for

all this stuff.

> > >

> > > Please try to rest and use as much oxygen as you need to keep your sats

up. Don't try to do without!

> > >

> > > Hugs,

> > >  

> > > Beth

> > > Moderator

> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> > >  

> > >  

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: teddyspenguins <teddyspenguins@ ...>

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Fri, October 2, 2009 3:57:43 PM

> > > Subject: RE: I think I might be getting worse

> > >

> > >  

> > > Hi everyone,

> > > VERY depressed the past week. Last week I was having a log of muscle

pain/weakness especially in my fingers which have also swelled up. It is so

difficult to even type - I am on Motrin all day long.I developed a low grade

fever which would come and go along with a rash on my face that would come and

go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg

for 6 days. He also did bloodwork. We discussed the fact that i have had 3 blood

tests checking for connective tissue disease that come back negative. I talked

to him on Tuesday and I have elevations in white count, platelets and liver

enzymes but he said it was slightly elevated and he thinks it is due to

prednisone(i' m on 10 mgs). What was really high was the SED rate and he just

can't understand with being on prednisone why it's so high. He also remarked

that I BARELY move and my SATS drop. I go from chair to exam table and go down

to high 80's. I can't even take a shower

> > > without O2(and that's an adventure every morning)- I almost fainted

without it.My SATS are even getting into the 70's when I walk no more than 20

feet without O2 or when I climb my flight of stairs at home with portable O2 on

5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called

rescheduling my appt since the doc is not available this week. Now I have to

wait until Oct 16 but I have the feeling even on the 16th it will just be

filling out MORE paperwork. Maybe the setback is because of URI? I don't know

anymore! Thanks for letting me vent- sorry to always be complaining.

> > > nne, Ild 6/09

> > >

> >

>

[Guest guest]

I have a piratically paralyzed leg due to a broken neck........this makes it worse to walk up stairl....and with the PF much worse.

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Monday, October 5, 2009 4:15:55 PMSubject: Re: I think I might be getting worse

- You also have heart rate very high going up stairs? I don't know why but it's comforting to know I'm not the only one. I grew up in a split level and it was exhausting always going up and down when I had 2 functionning lungs so I definitely feel your pain.> > >> > > nne,> > > You're not complaining, you are sick!!! How long have you been on the zitromax? If it's more than three or four days you should be beginning to feel better. Since you're not I would call the doctor. > > > I agree that an elevated sed rate when you're on pred is somewhat odd. There are more than three blood tests for connective tissue disease...you definitely need that consult at Columbia. You need a full fledged work up for all this stuff. > > > > > > Please try to rest and use as much oxygen as you need to keep your sats up. Don't try to do without!> > > > > > Hugs,> > > > > > Beth> > > Moderator> > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > >

> > > > > > > > > > > > > > > > > > ____________ _________ _________ __> > > From: teddyspenguins <teddyspenguins@ ...>> > > To: Breathe-Support@ yahoogroups. com> > > Sent: Fri, October 2, 2009 3:57:43 PM> > > Subject: RE: I think I might be getting worse> > > > > > > > > Hi everyone,> > > VERY depressed the past week. Last week I was having a log of muscle pain/weakness especially in my fingers which have also swelled up. It is so difficult to even type - I am on Motrin all day long.I developed a low grade fever which would come and go along with a rash on my face that would come and go. Went to see my pulmodude and he felt I had a URI and gave me zitromax 500mg for 6 days. He also did bloodwork. We discussed the fact that i have

had 3 blood tests checking for connective tissue disease that come back negative. I talked to him on Tuesday and I have elevations in white count, platelets and liver enzymes but he said it was slightly elevated and he thinks it is due to prednisone(i' m on 10 mgs). What was really high was the SED rate and he just can't understand with being on prednisone why it's so high. He also remarked that I BARELY move and my SATS drop. I go from chair to exam table and go down to high 80's. I can't even take a shower> > > without O2(and that's an adventure every morning)- I almost fainted without it.My SATS are even getting into the 70's when I walk no more than 20 feet without O2 or when I climb my flight of stairs at home with portable O2 on 5LPM. My oximeter is telling me the same info. PLUS last Friday Columbia called rescheduling my appt since the doc is not available this week.. Now I have to wait until Oct 16 but I have the feeling even on the

16th it will just be filling out MORE paperwork. Maybe the setback is because of URI? I don't know anymore! Thanks for letting me vent- sorry to always be complaining.> > > nne, Ild 6/09> > >> >>