[Sassy Sammie]

Hello Everyone,

It has been a couple of years since I've visited the site I had to re-register and everything, I was diagnosed with SLE in 2004 had taken Plaquenil for about 3 years, last two eye exams started showing vasculitis in my left eye so I stopped taking the Plaquenil, it has been a liittle over a year now.
Well, I was doing ok up until last week I've suddenly began having problems taking a deep breath and getting enough air into my lungs. I initially attributed it to having eaten too much, but the following day it persisted. I then thought it was the new perfume I'd gotten for Christmas so I stopped using it for a couple days but I haven't gotten much relief. I am not overweight and would say I am pretty healthy, I am just wondering if anyone else has lung issues as a result of their Lupus.
Ironically, I am a Respiratory Therapist and perform Pulmonary Function Tests daily, I had one done on myself and it was fairly normal, and in all my years of doing PFT's I had never had a patient come in to have a test done because they had Lupus. Can anyone out there relate....

Samantha

 

[Pink Pearl]

Hi Sammie,
Lupus often causes respiratory issues. One of the more common, pleurisy, is pretty straight forward. Another, not in the lungs specifically, but can feel like it is, is costochondritis. It hurts like pleurisy, but since it is not in the lung tissue itself, can be deceptive. This one can give a negative pft, but feels like it is from inside the lung.

Another, interstitial lung disease, can be progressive and since it isn't an inflammatory issue directly, can give a false negative finding. I have this one as well as other combos.

If you haven't already done so, you would be wise to add a pulmonologist to your team. I'm sure as a respiratory therapist, you know which doctor you want to see, and which you do not. Also, make sure that the doctor is knowing of lupus and the varieties with which it can present. No two patients are exactly alike. Keep a log with your peak flow meter results several times a day. Take it with you to your rheumy appt and also the the pulm doctor. It gives important information as to the different times in the day and the impact you deal with.

One of my earliest major sle problems was pleurisy and pneumonitis. Then I developed severe asthma, and I had never had asthma before. I was using albuterol in a nebulizer, plus inhalers, every 3 to 4 hours, sometimes more often. Then the snowball effect had a lot of things going on. I also have battled peritonitis for the sle duration, and since the membranes around the lungs, is similar to peritoneum, it can hit the lung membrane in with a peritonitis flare easily.

Good luck, and keep us up to speed on what you find.
Sally

 

[SophieH]

Fellow Respiratory Therapist

Hi Samantha,
I am an RT also and I had a bout of costochondritis last February that really had me puzzled . I have asthma too and felt like I was just begining an asthma attack and just couldn't get a good deep breath in, funny thing was I didn't feel wheezy. Inhaler did nothing, nebulizer did nothing. I stuck it out over the weekend and saw my PCP on Monday. I knew I did not have asthma obviously by then, I had another bout of costochondritis. I had presented differently though because I was on steroids already. So I think Sally is right since you have not had this symptom before it is best to see a good pulmonologist that you trust and get a diagnosis. Then you will know the best way to deal with it the next time (if/ when) it comes around. You have the added benefit of being able to educate yourself in the library at your hospital, if you work in a hospital setting. I worked in a pediatric neonatal intensive care so we did not see this kind of thing there. I had one or two Lupus patients when I worked on the floors, but it is pretty rare in pediatrics.If the physicians you work with are anything like ours they are great at helping people as long as you are reasonable with their time.
Good luck and I hope you feel better soon.

Sophie

 

[lazylegs]

Hi Samantha,

Add me to the list. I recently went through a bout of not being able to take a deep breath. It came to my attention during a yoga class. Used to concentrating on my breath I could tell something was different. A week later I experienced a squeezing feeling and sharp pain. It turned out to be Pleurisy.

When I have had costochondritis the pain was what stopped me from breathing deeply. The pain came and went unlike the Pleurisy.

You should definitely get this new symptom checked out.

Take care,
Lazylegs

 

[lilirishrose]

lungs

You can add me to the list too.The lupus has attacked my lungs and caused me to have horrible asthma and pleursy. It caused lots of scare tissue too. But this dosent happen to everyone, only us lucky few. Hang in there

 

[birdie]

I see my respitory consultant every year and sometimes more frequent, I have shrinking lung syndrome because of Lupus.:sad:

 

[MichelleAnn]

I had troubles breathing for several months, especially running out of air while talking and going up and down steps. I have pressure or pain in my lower lungs. I had pulmonary function tests which were poor and my doctor put me on inhalers, told me Asthma. Im not so sure because the inhalers do not help me as much as I would hope. They do help but not for long, 10 mins maybe. I have been diagnosed with Lupus a few years now and am on plaquenil and prednisone maintenance dose of 5mg daily. So, I say its asthma, the function tests said it was reactive not obstructive. I get so short of breath some evenings I almost panic. I have to relax and slow breathe. I started Curves, a womans workout place to see if that will help with reconditioning my body. I seem to breathe fine while I am there. Its worse in the evening. I wish you luck, Im sure you doing many pulmonary tests have seen all kinds of results and know more than I do. Maybe your doctor will try you on an inhaler. With asthma, pulmonary function tests can be normal one time and not another I believe depending on what triggers the asthma? Good Luck. :hehe:

 

[maddog]

add me to the list too

you can add me to the list too. I noticed it in a yoga class also, and couldn't take a deep breath, rib pain, unable to
stop coughing, and fever. I have a new primary because my good one when out of practice and I am so uneasy he
may not completely understand how seriously this is affecting me, along with I was looking for a part time job and cannot go on interviews. It looks bad when you cough all through the interview!
I guess I just have to wait till its gone, how do I get a
referral to a pulonary doc?
Hope you are all better now-does the cold trigger your
coughing too?

 

[KarolH]

I have had issues and did have a PFT test done that showed beginning stage COPD and Emphysema yet nothing really related to Lupus specifically.

I do not have many issues at all with my lungs thankfully.

I do hope you go get this looked into further as you work for a Pulmonologist, maybe he or she can provide insight?

 

[lazylegs]

Maddog,

How long have you had these symptoms? Does anyone else near you have these symptoms? If the fever continues more than a few days I suggest you see your GP. Your GP or Rheumatologist can give you a referral to see a Pulmonologist if they feel it is necessary.

Take care,
Lazylegs

 

[Katharine]

Hi there,

I also have lung problems and had a very bad attack of not being able to get breath earlier this year. I had a lung function test as well as an asthma provocation test to rule out asthma (which I knew I didn't have) and also a CAT scan.

Some things such as ILD don't necessarily show up on x-rays hence the CAT scan. My pulmologist said that even if nothing showed up on any tests, he wanted me to have a scan to have a reference point for the years to come as "lupus patients often have some sort of lung problems".

My tests were clear and an increase in my prednisolone (which I was tapering at the time) had, by then, reduced the severity of the problem. It is still unclear if this has been caused by ILD at an "early" stage or simply by muscle wastage due to myositis (I have a polymyositis overlap) or by chostochondritis (though from other people's descriptions I would think I'd know if I had that - I have pain but it is oppressive rather than very sharp).

So, it's all still a mystery to me but rather annoying. My problems come on far stronger if I am tired or down in some way (e.g. an infection, cold...). It is actually quite telling that these last few days I have been able to just lie down and go to sleep without having breathing problems as soon as I lie down. I had a sudden flare up of severe pain etc and the locum GP I went to see made me double my pred for a few days.

According to the pulmologist I saw the best control of lung problems comes through diease control (sometimes a little hard for me to gain).

Katharine

 

[maddog]

Hi Lazylegs,
I have been seeing my GP 3 times this last 3 weeks for this-
and my Rhuemie, just finished Levaquin 750 mg-still have fever
in the afternoons,coughing now under control mostly with tussinex
but taking a narcotic cough syrup every 12 hours really ruins your
everyday life, eh?
at least I am getting rest. I see my GP tomorrow , any advice how
to approach this with him? I don;t think he's listening but our
client doc relationship is new, my great GP went out of practice
last year in about Sept.

 

[lazylegs]

Hi Maddog,

Are you dealing with a virus or something else? Your GP can handle the basics. You would only need a referral if something further is going on or your doctor is stumped.

Dealing with a new doctor is much more difficult than dealing with someone that knows you and your body. Basically I would just be honest about how you are feeling. Don't sugar coat it. Ask if he still thinks it is the same thing he first diagnosed or if it has evolved into something further. If you are not confident with his answer ask if you should be seeing a specialist for this.

My GP is more than happy to give me a referral if he feels it is out of his realm. Not all are so accommodating.

Good luck with your appointment tomorrow. Hope you feel better soon.

Take care,
Lazylegs

 

[tbunny1]

Having become an "expert" in pluerisy, there would be great pain upon inhalation if that was what was going on. If I understand you correctly, you just feel tightness, not pain?

Congestive heart failure can cause one to feel short of breath, not because there is anything wrong with the lungs, but with the delivery of O2 to the body.

Not even suggesting this is what is going on, but that there is alot of different things that could cause this. Best to let a doctor know, and get it sorted out before it becomes an acute problem.

Be Well

 

[fallinthruthecracks]

i also have asthma that is very inconsistent. sometimes i have no symptoms. sometimes it flares up very severely. but have not had pleurisy.

 

[teachmom67]

My shortness of breath has been gradually getting worse. I kept writing it off as being out of shape and not exercising. I am very easily winded by stairs or walking. I have had pluerisy before (many years ago) and don't have pain like that. I don't weeze like I do with asthma and don't really have the mucous either like then... Just like my lungs are smaller... not really tight... Does that make any sense at all?

Amy

 

[peonyprincess]

Samantha,

AS I mentioned in a previous post, I was having difficulties with extreme fatigue and shortness of breath. My Rheumy ordered blood gases and I very much flunked the test. I was admitted to the hospital and placed on oxygen 365/24/7. What the docs have diagnosed me with is Interstitual Lung Disease secondary to Lupus. Fortunately I was able to get somewhere for assistance which is always my fear. Since going on oxygen, I have started to feel better. Like every other health problem, I wax and wane. I have a PFT every 3months to check my status. The initially were not anyhood and unfortunately, continues to worsen. I suppose that explains the 4L.

If you question this, get to your physician and have him check your blood gas levels. Iy could prove to be a lifesaver.


Nancy

 

[Christine UK]

I could have written your post !!..

I had these problems over a year ago i felt like i just couldnt get enough air in my lungs...almost like someone had stuffed them full of cotton wool !


They thought it was the metho so took me off that but the problems continued...anyway after a few lung function test and a very on the ball consultant i was dx with Asthma...oh my the inhalor is just wonderful ! x x

 

[teachmom67]

O.k... so have any of you had good results with treatment?

Are most of you on prednisone for lung issues?

A

 

[teachmom67]

I think my big fear is that of heart failure causing the shortness of breath and very extreme fatigue. Mostly I need things to get better. It hit me how bad it is yesterday when I was teaching. I kept having this overwhelming feeling of wanting to lie down on the floor. Something has to give. I'm only working half time this year due to health probs. I NEED to keep my job because I will lose my health insurance if I can't keep it. I'm a single mom so working half time has been a reel financial strain even though I get some disability money through my school's disability insurance.

A