Re: Hi all... am having trouble breathing; had no idea RA affects lungs, too

[Guest guest]

Well, I am still new to RA and don't post too much. RA has affected

my lungs as well. I use advair 2 x per day and ER inhaler,

occasionally prednisone if I am having a particularly difficult time

with breathing. My DR explained to me that it is asthma caused by

RA. Because airway constriction is by definition - asthma. Cassy---

In , " Cheryl " <hunca@...> wrote:

>

> I've been with this group awhile, now, but... oh, I love to put my

> head in the sand and pretend I don't have to deal with this, so I

> haven't been reading the posts, but... things are definitely

> escalating for me, so I'm... here.

>

> Our healthcare system is just shameful. I told my dr once about an

> attack I had once, a breathing problem due to exertion, and he

> tossed an inhaler scrip at me, and this is how I've gone for

years,

> thinking all my problems were due to asthma, BUT was NEVER tested

> for asthma. Have never seen a pulmonologist.

>

> Don't think that explains the paralized left phrenic nerve they

> found last year, tho, and when I asked what could've caused that,

> all I got was a shrug. No clue. I was given one of those 7-day

paks

> of steroids, and that was that. No follow-up, never asked me about

> it again. I suppose I should've asked how we knew if that had

helped

> or not, but...

>

> So, now my breathing problems are much worse, so much so that my

> daily inhaler has no effect, and I've gone to my emergency inhaler

> as my daily. I know this isn't the way to handle it, so I'm trying

> to get on with a new dr... an internist this time, vs family

> practice. I can't remember the last time I saw my actual dr...

just

> his PA. I need to get back to the rheumatologist who originally

> diagnosed me with (back then she called it) 'systemic RA'. Now,

what

> do they call it? polyarthritis?

>

> I'm guessing the RA is causing the nerve problem, and who knows,

> there may be nodes in there. Well, whatever the reason, I think I

> need to find out. I hate the thought of an oxygen tank, but...

>

> I was just wondering if anyone has had lung issues w/their RA, and

> what treatment was offered.

>

> ** Hunca **

>

[Guest guest]

Hi:

I have had asthma since I was a child, but it has

gotten worse since RA. I was not taking any meds,

just occasionally having to use an inhaler, but now am

on Advair daily as well as my inhaler. I am prone to

bronchitis, and have used Prednisone for both RA and

bronchitis/asthma related problems.

I would suggest that you be seen by a pulmonary

specialist, the sooner the better. Asthma, or any

breathing problem, is something to be taken seriously.

Best of luck -

Kathe in CA

> In , " Cheryl "

> <hunca@...> wrote:

> >

> > I've been with this group awhile, now, but... oh,

> I love to put my

> > head in the sand and pretend I don't have to deal

> with this, so I

> > haven't been reading the posts, but... things are

> definitely

> > escalating for me, so I'm... here.

> >

> > Our healthcare system is just shameful. I told my

> dr once about an

> > attack I had once, a breathing problem due to

> exertion, and he

> > tossed an inhaler scrip at me, and this is how

> I've gone for

> years,

> > thinking all my problems were due to asthma, BUT

> was NEVER tested

> > for asthma. Have never seen a pulmonologist.

> >

> > Don't think that explains the paralized left

> phrenic nerve they

> > found last year, tho, and when I asked what

> could've caused that,

> > all I got was a shrug. No clue. I was given one of

> those 7-day

> paks

> > of steroids, and that was that. No follow-up,

> never asked me about

> > it again. I suppose I should've asked how we knew

> if that had

> helped

> > or not, but...

> >

> > So, now my breathing problems are much worse, so

> much so that my

> > daily inhaler has no effect, and I've gone to my

> emergency inhaler

> > as my daily. I know this isn't the way to handle

> it, so I'm trying

> > to get on with a new dr... an internist this time,

> vs family

> > practice. I can't remember the last time I saw my

> actual dr...

> just

> > his PA. I need to get back to the rheumatologist

> who originally

> > diagnosed me with (back then she called it)

> 'systemic RA'. Now,

> what

> > do they call it? polyarthritis?

> >

> > I'm guessing the RA is causing the nerve problem,

> and who knows,

> > there may be nodes in there. Well, whatever the

> reason, I think I

> > need to find out. I hate the thought of an oxygen

> tank, but...

> >

> > I was just wondering if anyone has had lung issues

> w/their RA, and

> > what treatment was offered.

> >

> > ** Hunca **

> >

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Hoe do I chat with someone,not e-mail.I am new to chats.

Kathe Sabetzadeh <lv2ryd@...> wrote: Hi:

I have had asthma since I was a child, but it has

gotten worse since RA. I was not taking any meds,

just occasionally having to use an inhaler, but now am

on Advair daily as well as my inhaler. I am prone to

bronchitis, and have used Prednisone for both RA and

bronchitis/asthma related problems.

I would suggest that you be seen by a pulmonary

specialist, the sooner the better. Asthma, or any

breathing problem, is something to be taken seriously.

Best of luck -

Kathe in CA

> In , " Cheryl "

> <hunca@...> wrote:

> >

> > I've been with this group awhile, now, but... oh,

> I love to put my

> > head in the sand and pretend I don't have to deal

> with this, so I

> > haven't been reading the posts, but... things are

> definitely

> > escalating for me, so I'm... here.

> >

> > Our healthcare system is just shameful. I told my

> dr once about an

> > attack I had once, a breathing problem due to

> exertion, and he

> > tossed an inhaler scrip at me, and this is how

> I've gone for

> years,

> > thinking all my problems were due to asthma, BUT

> was NEVER tested

> > for asthma. Have never seen a pulmonologist.

> >

> > Don't think that explains the paralized left

> phrenic nerve they

> > found last year, tho, and when I asked what

> could've caused that,

> > all I got was a shrug. No clue. I was given one of

> those 7-day

> paks

> > of steroids, and that was that. No follow-up,

> never asked me about

> > it again. I suppose I should've asked how we knew

> if that had

> helped

> > or not, but...

> >

> > So, now my breathing problems are much worse, so

> much so that my

> > daily inhaler has no effect, and I've gone to my

> emergency inhaler

> > as my daily. I know this isn't the way to handle

> it, so I'm trying

> > to get on with a new dr... an internist this time,

> vs family

> > practice. I can't remember the last time I saw my

> actual dr...

> just

> > his PA. I need to get back to the rheumatologist

> who originally

> > diagnosed me with (back then she called it)

> 'systemic RA'. Now,

> what

> > do they call it? polyarthritis?

> >

> > I'm guessing the RA is causing the nerve problem,

> and who knows,

> > there may be nodes in there. Well, whatever the

> reason, I think I

> > need to find out. I hate the thought of an oxygen

> tank, but...

> >

> > I was just wondering if anyone has had lung issues

> w/their RA, and

> > what treatment was offered.

> >

> > ** Hunca **

> >

>

>

>

>

>

Kathe

" To ride a horse is to borrow freedom. "

__________________________________________________

[Guest guest]

Hi Cheryl,

I just wanted to tell you something my rheumatologist said that might

be helpful. He reminded me that HE is an internist and can basically

act as my doctor for most other things as well.

I think it's extremely important to have a rheumatologist, and never

get such important treatment from a generalist.

I recently heard a horror story from a mom of 3-year-old with terrible

asthma. The mother took her to a GP who prescribed excessive amounts

of steroids, till the girl weighed 120 pounds-----at 3 years old! The

the doctor scolded the mom for having such a fat daughter and never

told her weight gain was a direct result of all the steroids. What an

idiot. It created a year of social ostracism for the girl and mother.

She finally went to an asthma specialist who took the poor kid off all

those steroids. I mean, I know this story is not about RA, but we

need experts to treat us, not prescription pushers.

It makes me so mad!

Sharon

>

> I've been with this group awhile, now, but... oh, I love to put my

> head in the sand and pretend I don't have to deal with this, so I

> haven't been reading the posts, but... things are definitely

> escalating for me, so I'm... here.

>

> Our healthcare system is just shameful. I told my dr once about an

> attack I had once, a breathing problem due to exertion, and he

> tossed an inhaler scrip at me, and this is how I've gone for years,

> thinking all my problems were due to asthma, BUT was NEVER tested

> for asthma. Have never seen a pulmonologist.

>

> Don't think that explains the paralized left phrenic nerve they

> found last year, tho, and when I asked what could've caused that,

> all I got was a shrug. No clue. I was given one of those 7-day paks

> of steroids, and that was that. No follow-up, never asked me about

> it again. I suppose I should've asked how we knew if that had helped

> or not, but...

>

> So, now my breathing problems are much worse, so much so that my

> daily inhaler has no effect, and I've gone to my emergency inhaler

> as my daily. I know this isn't the way to handle it, so I'm trying

> to get on with a new dr... an internist this time, vs family

> practice. I can't remember the last time I saw my actual dr... just

> his PA. I need to get back to the rheumatologist who originally

> diagnosed me with (back then she called it) 'systemic RA'. Now, what

> do they call it? polyarthritis?

>

> I'm guessing the RA is causing the nerve problem, and who knows,

> there may be nodes in there. Well, whatever the reason, I think I

> need to find out. I hate the thought of an oxygen tank, but...

>

> I was just wondering if anyone has had lung issues w/their RA, and

> what treatment was offered.

>

> ** Hunca **

>

[Guest guest]

>

> Well, I am still new to RA and don't post too much. RA has affected

> my lungs as well. I use advair 2 x per day and ER inhaler,

> occasionally prednisone if I am having a particularly difficult time

> with breathing. My DR explained to me that it is asthma caused by

> RA. Because airway constriction is by definition - asthma. Cassy

** Thanks so much for posting... I just had no idea. It's also

affected my eyes (dry eyes).

** I wound up for the very first time in Urgent Care yesterday

afternoon because I just couldn't seem to catch my breath. I called my

dr's office, and they couldn't get me in until Tues morning, but the

girl on the phone said, 'I can hear you wheezing and the way you're

breathing, I want you to go to the Urgent Care or the ER ... NOW! "

** So, I did. My BP and pulse were waaaaay up there, and the UC doc

said if my blood ox hadn't been as good as it was (97%), he would've

plunked my butt (his words, exactly, lol) in the hospital. He was

disgusted when he found out I hadn't seen my actual primary care M.D.

in over three years! I just keep getting passed on to his P.A. I told

the UC doc that I was changing drs (to get back to my original rheumy,

I had to change to her medical group, which meant also changing my

primary care doc -- they sure don't make it easy, do they?!) and had

chosen an internist, to which he said " Smart girl " , so I guess that

was the right thing to do.

** They gave me a shot of ... depomedrol? and a steroid pak, and also

antibiotics in case there was some kind of infection going on. I sure

can see why ppl get hooked on steroids... they relieve so much of the

pain and make me feel more normal and strong, like I used to be. But,

I know how dangerous they are. The doc also gave me a new scrip for my

Albuterol inhaler and said to use that as my daily until I see the

P.A. on Tues -- maybe she will add something or prescribe something

different, altogether, but it's kind of moot, since I change drs as of

March 1st. Still... one does have to breathe! ;-)

** Hunca **

[Guest guest]

>

> Hi:

>

> I have had asthma since I was a child, but it has

> gotten worse since RA. I was not taking any meds,

> just occasionally having to use an inhaler, but now am

> on Advair daily as well as my inhaler. I am prone to

> bronchitis, and have used Prednisone for both RA and

> bronchitis/asthma related problems.

>

> I would suggest that you be seen by a pulmonary

> specialist, the sooner the better. Asthma, or any

> breathing problem, is something to be taken seriously.

> Best of luck -

>

> Kathe in CA

** Thanks so much, Kathe. I will get to the specialists, just as soon

as I can get thru this stupid HMO red tape! I can't see my rheumy

until I first hook up with the new primary care doc, and he's one hard

guy to get an appt with! I've left two mgs, and the recording said

they'd get back to all calls in the same business day, but I never

heard from them. Hopefully, they will call... maybe not Monday? a

holiday? maybe Tues, then, but if not, I will call my HMO and ask them

for assistance in getting thru to him for an appt. I even said on my

msg that I was having trouble breathing... you'd think that would be a

sort-of priority issue? Beats me.

** Hunca **

[Guest guest]

--- In , " sharonmacd " <omoshiroi@...>

wrote:

>

> Hi Cheryl,

>

> I just wanted to tell you something my rheumatologist said that

might

> be helpful. He reminded me that HE is an internist and can

basically

> act as my doctor for most other things as well.

** Yes! and I think they are much more qualified, when you have

several chronic things going on at once, to be able to better

coordinate everything.

> She finally went to an asthma specialist who took the poor kid off

all

> those steroids. I mean, I know this story is not about RA, but we

> need experts to treat us, not prescription pushers.

>

> It makes me so mad!

>

> Sharon

** And that's just what it is, too... they get these drug reps in

there all the time, I see them every single time I'm in the dr's

office, and then the P.A. just gives me a bag full of samples, and

no real answers. AARRRGGGHHHH!!

** Thanks for the empathy!

** cheryl/hunca **