Re: Lung involvement

[Guest guest]

Hi Jackie,

Sorry to hear you have had the lung involvement also.

My first symptom of disease was chest pain. I've been

trying to tell my doctors that something is going on

in my chest, but the rheumatologist keeps saying that

the chest pain has nothing to do with the disease. My

pcp and I are hoping these latest test results will

convince her otherwise.

I have been having alot more trouble with breathing

lately, and also hoarseness. I'm not sure how to read

the test results for the pulmonary function, but my

pcp did say that it is only at 60%. I can't tell a

thing about the x-ray - there are little white lines

or areas which I assume are the fibrosis or scarring

he was referring to. He said the x-ray was not very

good and I needed a ct scan to get a better view, but

his office is not equipped to do that. I'm glad it is

only a week until I see the rheumy - I hope this time

she will get some answers. I'm really not too happy

about just upping the prednisone - there must be

something else we can do...

I have had trouble with pulse oxygenation when I was

on methotrexate - highly allergic, so I can't ever

take that one again. The worst part is that I was

beginning to actually feel better when I was taking it

- go figure!

What were the reasons your lung function started

improving? Were you on any particular medications? I

too am glad that we are given more lung function than

we will ever need. I've a close friend who had to have

the bottom lobe of her lung removed from cancer and

she manages pretty well now, though she does get short

of breath easily.

I don't see a pulmonologist - just my pcp and rheumy.

Perhaps I do need one though!

I don't think it is silly that you feel your first

visit at the pulmonologists was better for having

discussed everything face to face prior to a " paper

gown " exam. I think that is what I most hate about

the rheumy... my pcp never makes me do that. My

raynauds gives me fits in dr's offices - they are

always so cold, so I understand all about the lovely

purple/red/blue skin.

I too have noticed that I have become hyper sensitive

to any irritant smells.

Thanks for writing

Alecia

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