new symptoms

[Guest guest]

Hi yall!

One month in South Carolina and I am starting to talk like the locals. I

haven't been very vocal on this site but for an occassional joke or motivational

piece but thought I'd run this by you all to get whatever feedback you can

provide. I was diagnosed by VATS in '07 to have IPF (but effective dating back

to a catscan taken in July of '05 - misread by a different pulmonologist in

Seattle). This was done at the Univ of Wash Med Center and contrary to Dr

Rhagus regimen for treatment, I did not go on any of his meds - unless you want

to call NAC a med. Reason being, nothing had been documented to show those

drugs having had any impact on IPF. I do continue using Albuterol by way of

inhaler and nebulizer but had been on that since 2005 when doctor erroneously

determined I had asthma.

Over the last year, besides having my stats drop to the point where I am on

oxygen pretty much 24/7, I have been getting a variety of other symptoms that

seem to come and go at will. I will get burning eyes (dry eye syndrome?) which

is remedied with wetting solution eyedrops. I will get an extremely dry throat

- so dry I can't talk or breath - so must keep water handy all the time. I get

tears forming and falling from the corners of my eyes opposite where tears are

normally produced. These appear for no known reason and eye doctors have told

me I have no problems with plugged tear ducts etc. ie they have no clue. I am

having lots of fatigue and pain in my joints particularly hand, legs and hip

which was non-existent just a few months ago. If I sit in one place for

anywhere from 1/2 - 2 hours and I try to stand up, everything is very stiff -

with a lot of pain from groin areas to the knees along with pain and tightness

in the calves. All of these to me would seem to indicate inflammation of some

sort but IPF is not supposed to be inflammatory. Does this sound like I'm

dealing with something entirely different, or is the all part of the IPF

progressing? Hope you can offer some ideas!

Mike

[Guest guest]

Mike-

Some of those symptoms (dry eyes, dry mouth particularly) sound like Sjogren's Syndrom. Have you been tested for that?

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

To: Breathe-Support Sent: Tuesday, August 18, 2009 12:56:02 PMSubject: new symptoms

Hi yall!One month in South Carolina and I am starting to talk like the locals. I haven't been very vocal on this site but for an occassional joke or motivational piece but thought I'd run this by you all to get whatever feedback you can provide. I was diagnosed by VATS in '07 to have IPF (but effective dating back to a catscan taken in July of '05 - misread by a different pulmonologist in Seattle). This was done at the Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment, I did not go on any of his meds - unless you want to call NAC a med. Reason being, nothing had been documented to show those drugs having had any impact on IPF. I do continue using Albuterol by way of inhaler and nebulizer but had been on that since 2005 when doctor erroneously determined I had asthma.Over the last year, besides having my stats drop to the point where I am on oxygen pretty much 24/7, I have been getting a variety of other symptoms that

seem to come and go at will. I will get burning eyes (dry eye syndrome?) which is remedied with wetting solution eyedrops. I will get an extremely dry throat - so dry I can't talk or breath - so must keep water handy all the time. I get tears forming and falling from the corners of my eyes opposite where tears are normally produced. These appear for no known reason and eye doctors have told me I have no problems with plugged tear ducts etc. ie they have no clue. I am having lots of fatigue and pain in my joints particularly hand, legs and hip which was non-existent just a few months ago. If I sit in one place for anywhere from 1/2 - 2 hours and I try to stand up, everything is very stiff - with a lot of pain from groin areas to the knees along with pain and tightness in the calves. All of these to me would seem to indicate inflammation of some sort but IPF is not supposed to be inflammatory. Does this sound like I'm dealing with something entirely

different, or is the all part of the IPF progressing? Hope you can offer some ideas!Mike

[Guest guest]

Mike

First, very good exercise of your own medical management in not

automatically following the Prednisone regimen that Dr. Raghu does

believe every patient should try. That's his opinion and I've read his

debate from several years ago. But there is another side to that debate.

There is no right or wrong just opinions.

Now, as to the symptoms you're describing, they could be many things but

certainly bring up the question to me if you've been through a complete

screening for connective tissue disease. Have you seen a rheumatologist

or did U of Wash screen you thoroughly.

Not sure why you're using Albuterol either. If you don't have Asthma or

COPD a continued use of it generally isn't prescribed. Honestly it could

be contributing to the dry eyes and throat. Oxygen adds to my dry eyes,

just blowing near. One night it slipped and was only in one nostril with

the other blowing toward my eye. My eye burned so bad. However, I would

recommend an opthalmologist looking. Are you using a humidifier on your

oxygen? Hope so. The pain in the joints and muscles is certainly a

matter for a rheumatologist.

>

> Hi yall!

>

> One month in South Carolina and I am starting to talk like the

locals. I haven't been very vocal on this site but for an occassional

joke or motivational piece but thought I'd run this by you all to get

whatever feedback you can provide. I was diagnosed by VATS in '07 to

have IPF (but effective dating back to a catscan taken in July of '05 -

misread by a different pulmonologist in Seattle). This was done at the

Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment,

I did not go on any of his meds - unless you want to call NAC a med.

Reason being, nothing had been documented to show those drugs having had

any impact on IPF. I do continue using Albuterol by way of inhaler and

nebulizer but had been on that since 2005 when doctor erroneously

determined I had asthma.

> Over the last year, besides having my stats drop to the point

where I am on oxygen pretty much 24/7, I have been getting a variety of

other symptoms that seem to come and go at will. I will get burning

eyes (dry eye syndrome?) which is remedied with wetting solution

eyedrops. I will get an extremely dry throat - so dry I can't talk or

breath - so must keep water handy all the time. I get tears forming and

falling from the corners of my eyes opposite where tears are normally

produced. These appear for no known reason and eye doctors have told me

I have no problems with plugged tear ducts etc. ie they have no clue. I

am having lots of fatigue and pain in my joints particularly hand, legs

and hip which was non-existent just a few months ago. If I sit in one

place for anywhere from 1/2 - 2 hours and I try to stand up, everything

is very stiff - with a lot of pain from groin areas to the knees along

with pain and tightness in the calves. All of these to me would seem to

indicate inflammation of some sort but IPF is not supposed to be

inflammatory. Does this sound like I'm dealing with something entirely

different, or is the all part of the IPF progressing? Hope you can

offer some ideas!

>

> Mike

>

[Guest guest]

Hi Mike,Where is SC are you?  Did you move or just visiting?Your post is eerily familiar.  I'm sure it could be any number of things, but a visit to a rheumy might be in order. It definitely sounds like some sort of inflammation.   You could have RA, or as in my case sarcoidosis.  The dry eyes, mouth, "backward tears" stiff and achy joints etc and sore throat are my constant companions. If you are close to ton, the medical center is one of the 13 centers of excellence AND they have a sarcoidosis pulmonary specialists there.Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 PF/ Sarcoidosis/Gerd

Lady Slipper OrchidSubject: new symptomsTo: Breathe-Support Date: Tuesday, August 18, 2009, 12:56 PM

 

Hi yall!

One month in South Carolina and I am starting to talk like the locals. I haven't been very vocal on this site but for an occassional joke or motivational piece but thought I'd run this by you all to get whatever feedback you can provide. I was diagnosed by VATS in '07 to have IPF (but effective dating back to a catscan taken in July of '05 - misread by a different pulmonologist in Seattle). This was done at the Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment, I did not go on any of his meds - unless you want to call NAC a med. Reason being, nothing had been documented to show those drugs having had any impact on IPF.. I do continue using Albuterol by way of inhaler and nebulizer but had been on that since 2005 when doctor erroneously determined I had asthma.

Over the last year, besides having my stats drop to the point where I am on oxygen pretty much 24/7, I have been getting a variety of other symptoms that seem to come and go at will. I will get burning eyes (dry eye syndrome?) which is remedied with wetting solution eyedrops. I will get an extremely dry throat - so dry I can't talk or breath - so must keep water handy all the time. I get tears forming and falling from the corners of my eyes opposite where tears are normally produced. These appear for no known reason and eye doctors have told me I have no problems with plugged tear ducts etc. ie they have no clue. I am having lots of fatigue and pain in my joints particularly hand, legs and hip which was non-existent just a few months ago. If I sit in one place for anywhere from 1/2 - 2 hours and I try to stand up, everything is very stiff - with a lot of pain from groin areas to the knees along with pain and tightness in the calves. All of

these to me would seem to indicate inflammation of some sort but IPF is not supposed to be inflammatory. Does this sound like I'm dealing with something entirely different, or is the all part of the IPF progressing? Hope you can offer some ideas!

Mike

[Guest guest]

Mike,

I have IPF. I also have many of the joint and pain issues you describe. I do not

however, have the dry eye and mouth thing. I still use Albuterol via nebulizer

and inhaler as needed. Some patients with IPF do not need or use Albuterol as

there are some doctors and patients that feel it doesn't fit the dx. However,

there are some of us IPFer's that it works very effectively for. Typically I

take an Albuterol neb. treatment after having a long coughing fit, when I have

burning in my lungs and when I'm having diffitculty coughing up trapped mucus.

Judging from your combined newer symptoms it's best to mention them to your

Pulmo. so he/she can run bloodwork again for your Rheumatoid factor and

connective tissue diseases.

Not sure if you can take NSAID's but, if you can 1 Aleve works wonders on

evening joint pain.

I wish you the best.

34 FL

IPF DX 1/06

> >

> > Hi yall!

> >

> > One month in South Carolina and I am starting to talk like the

> locals. I haven't been very vocal on this site but for an occassional

> joke or motivational piece but thought I'd run this by you all to get

> whatever feedback you can provide. I was diagnosed by VATS in '07 to

> have IPF (but effective dating back to a catscan taken in July of '05 -

> misread by a different pulmonologist in Seattle). This was done at the

> Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment,

> I did not go on any of his meds - unless you want to call NAC a med.

> Reason being, nothing had been documented to show those drugs having had

> any impact on IPF. I do continue using Albuterol by way of inhaler and

> nebulizer but had been on that since 2005 when doctor erroneously

> determined I had asthma.

> > Over the last year, besides having my stats drop to the point

> where I am on oxygen pretty much 24/7, I have been getting a variety of

> other symptoms that seem to come and go at will. I will get burning

> eyes (dry eye syndrome?) which is remedied with wetting solution

> eyedrops. I will get an extremely dry throat - so dry I can't talk or

> breath - so must keep water handy all the time. I get tears forming and

> falling from the corners of my eyes opposite where tears are normally

> produced. These appear for no known reason and eye doctors have told me

> I have no problems with plugged tear ducts etc. ie they have no clue. I

> am having lots of fatigue and pain in my joints particularly hand, legs

> and hip which was non-existent just a few months ago. If I sit in one

> place for anywhere from 1/2 - 2 hours and I try to stand up, everything

> is very stiff - with a lot of pain from groin areas to the knees along

> with pain and tightness in the calves. All of these to me would seem to

> indicate inflammation of some sort but IPF is not supposed to be

> inflammatory. Does this sound like I'm dealing with something entirely

> different, or is the all part of the IPF progressing? Hope you can

> offer some ideas!

> >

> > Mike

> >

>

[Guest guest]

Mike, I agree with Barbara. I have Sjogren's and those symptoms sound very familiar. PJ in Ohio, 54, IPF '09, Sjogren's '95 new symptoms

Hi yall!One month in South Carolina and I am starting to talk like the locals. I haven't been very vocal on this site but for an occassional joke or motivational piece but thought I'd run this by you all to get whatever feedback you can provide. I was diagnosed by VATS in '07 to have IPF (but effective dating back to a catscan taken in July of '05 - misread by a different pulmonologist in Seattle). This was done at the Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment, I did not go on any of his meds - unless you want to call NAC a med. Reason being, nothing had been documented to show those drugs having had any impact on IPF. I do continue using Albuterol by way of inhaler and nebulizer but had been on that since 2005 when doctor erroneously determined I had asthma.Over the last year, besides having my stats drop to the point where I am on oxygen pretty much 24/7, I have been getting a variety of other symptoms thatseem to come and go at will. I will get burning eyes (dry eye syndrome?) which is remedied with wetting solution eyedrops. I will get an extremely dry throat - so dry I can't talk or breath - so must keep water handy all the time. I get tears forming and falling from the corners of my eyes opposite where tears are normally produced. These appear for no known reason and eye doctors have told me I have no problems with plugged tear ducts etc. ie they have no clue. I am having lots of fatigue and pain in my joints particularly hand, legs and hip which was non-existent just a few months ago. If I sit in one place for anywhere from 1/2 - 2 hours and I try to stand up, everything is very stiff - with a lot of pain from groin areas to the knees along with pain and tightness in the calves. All of these to me would seem to indicate inflammation of some sort but IPF is not supposed to be inflammatory. Does this sound like I'm dealing with something entirelydifferent, or is the all part of the IPF progressing? Hope you can offer some ideas!Mike

[Guest guest]

Mike,

These new symptoms are not IPF symptoms. Whether the dry eyes, dry mouth and throat are related to the oxygen use and/or albuterol or whether they are symptoms of something else entirely is impossible for any of us to say. The fact that you've got those symptoms in combination with increased fatigue and lots of joint pain make me very suspicious that there is more going on here in terms of a possible auto-immune/connective tissue disease. I'm assuming that testing was done at UWMC at the time of your diagnosis but it's probably a good idea to get to someplace like MUSC in ton and look at everything all over again. If you've got a connective tissue disease (as I do) there is usually treatment that can slow down progression of that and the lung disease too.

You are in my thoughts and prayers!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, August 18, 2009 12:56:02 PMSubject: new symptoms

Hi yall!One month in South Carolina and I am starting to talk like the locals. I haven't been very vocal on this site but for an occassional joke or motivational piece but thought I'd run this by you all to get whatever feedback you can provide. I was diagnosed by VATS in '07 to have IPF (but effective dating back to a catscan taken in July of '05 - misread by a different pulmonologist in Seattle). This was done at the Univ of Wash Med Center and contrary to Dr Rhagus regimen for treatment, I did not go on any of his meds - unless you want to call NAC a med. Reason being, nothing had been documented to show those drugs having had any impact on IPF. I do continue using Albuterol by way of inhaler and nebulizer but had been on that since 2005 when doctor erroneously determined I had asthma.Over the last year, besides having my stats drop to the point where I am on oxygen pretty much 24/7, I have been getting a variety of other symptoms that

seem to come and go at will. I will get burning eyes (dry eye syndrome?) which is remedied with wetting solution eyedrops. I will get an extremely dry throat - so dry I can't talk or breath - so must keep water handy all the time. I get tears forming and falling from the corners of my eyes opposite where tears are normally produced. These appear for no known reason and eye doctors have told me I have no problems with plugged tear ducts etc. ie they have no clue. I am having lots of fatigue and pain in my joints particularly hand, legs and hip which was non-existent just a few months ago. If I sit in one place for anywhere from 1/2 - 2 hours and I try to stand up, everything is very stiff - with a lot of pain from groin areas to the knees along with pain and tightness in the calves. All of these to me would seem to indicate inflammation of some sort but IPF is not supposed to be inflammatory. Does this sound like I'm dealing with something entirely

different, or is the all part of the IPF progressing? Hope you can offer some ideas!Mike