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Margie26
05-28-2009, 05:52 PM
Hi everyone,

I sent my introduction this morning, because I'm so happy :yes: that I found this forum! I was looking for people who can relate and understand.

I had a problem with my lungs for years now.
I went to a pulmonologist about 5 years ago and it's until now this specialist is linking all the symptoms.

Is scarring in the lungs a symptom caused by Lupus and how is it treated?

The lung specialist gave me so many high doses of medications that made me so sick since he saw that I had this lung problem telling me that
he can't find the cause of the lung problem saying that there are scars in the lungs because of the spyrometry test results that is done each year.

Today I had shortness of breath, cough and chest pain.

I would like to know if there are more persons who have this symptom.

Thank you very much. I'm so happy to be here and that I can ask questions ot better understand this disease. :cute:

Hugs,

Margie

mountaindreamer
05-28-2009, 07:16 PM
hi margie,

welcome again, glad you are letting us help you.

Scarring of the lung certainly sounds like it could be another tragedy of lupus. I don't know a lot about this, but i am sure others will be along very soon with their infinite wisdom.

shortness of breath, cough and chest pains are all symptoms of lupus. Sorry, hope you can get some relief. It is very scary when you can't get a full breath, but try to relax, and hopefully it will subside soon.

abbasgirl
05-28-2009, 08:34 PM
Hi Margie. So glad you're here. Welcome! I'm fairly new too and feel right at home at this site. You people are awesome!

I don't really have any answers for you, but I'm sure someone here does. I just wanted to welcome you and offer ((((hugs)))). The only lung issues I've had is a bad bout of bronchitis as a teen and pneumonia about five years ago. I'm so sorry for your pain and having difficulty breathing. That's terrible. ((((more hugs))))

Margie26
05-29-2009, 04:30 AM
Thank you very much for your support and hugs.
I so needed a listening ear.

I went to the doc yesterday in the afternoon and I received 2 medications
to help dilate the bronchien ( I hope I wrote it right...lol)

I feel better after using Ventolin 2 times yesterday so I could manage to go to the doc.

I will keep you updated.

Hugs,

Margie

Oluwa
05-29-2009, 06:10 AM
Hi Margie...

We haven't met, I am Oluwa...welcome..hugs.

I've only had pleurisy.

Did the doctor mention what type disease, syndrome you have?

Here are some of the diseases associated with Lupus that may fit your symptoms...

It is easier on my fingers and wrists to copy and paste..hope this helps.

Love,
Oluwa

Pleurisy...


Chest pain when you inhale and exhale (between breaths, you feel almost no pain)
Shortness of breath
Dry cough
Fever and chills, depending on the cause

The sharp, fleeting pain in your chest that pleurisy causes is made worse by coughing, sneezing, moving and deep breathing. In some cases, pain may extend from your chest to your shoulder. You may find relief from pain when you hold your breath or when you apply pressure over the painful area.
When an accumulation of fluids (pleural effusion) is associated with pleurisy, the pain usually disappears because the fluid serves as a lubricant. However, if enough fluid accumulates, it puts pressure on your lungs and interferes with their normal function, causing shortness of breath. If the fluid becomes infected, the signs and symptoms of dry cough, fever and chills may appear. An infected pleural effusion is called an empyema.

Did the doctor mention what type disease, syndrome you have?
Chronic diffuse interstitial lung disease
Chronic diffuse (widespread) interstitial lung disease is relatively uncommon in people with SLE. Chronic interstitial lung disease scars the lung. This scarred tissue acts as a barrier to the oxygen that normally moves easily from the lung into the blood.
Besides lupus, there are other reasons for this condition. Correct identification of the cause is necessary in order to chose the proper treatment.
Symptoms of chronic diffuse interstitial lung disease


gradual onset of a chronic, dry cough
pleuritic-like chest pains
difficulty breathing during physical activity.

Diagnosing chronic diffuse interstitial lung disease
To determine the cause, special procedures are required, such as:


bronchoscopy
bronchoalveolar lavage
lung biopsy.

Treating chronic diffuse interstitial lung disease
Chronic lupus interstitial lung disease is primarily treated with corticosteroids, with varying results. In general, the lung function can be stabilized with treatment.
The progression of chronic interstitial lung disease can be measured with several tests that assess disease activity and the person's response to therapy. These include:


the pulmonary function test to assess the ability of the lungs to receive, hold, and use air
the oxygen saturation test to measure how readily oxygen moves through the lung and into the blood stream; oxygen saturation is usually reduced in chronic interstitial lung disease
high-resolution CT scans to look at the lung and chest structures.

Also.. Pulmonary fibrosis is a serious disease that causes progressive scarring of your lung tissue.
The current thinking is that pulmonary fibrosis begins with repeated injury to the tissue within and between the tiny air sacs (alveoli) in your lungs. The damage eventually leads to scarring (fibrosis), which stiffens your lungs and makes breathing difficult. The most common symptoms are shortness of breath and a dry cough.
Current treatments for pulmonary fibrosis include medications and therapy to improve lung function and quality of life. A number of new therapies for pulmonary fibrosis are in clinical trials. In the meantime, a lung transplant may be an option for some people with pulmonary fibrosis.
.

Margie26
05-29-2009, 07:35 AM
Hi Oluwa,

First of all, thank you for the welcome :cute:

Thank you very much for the article.
What you wrote got me thinking......


I did a Spyrometry 5 years ago and I have problems to take a deep breath ( I get sever pain in my chest) and exhalation is painful too.

The lung specialist didn't search further for any other difficuties when the lab test came out negative fo Lupus 5 years ago.:skeptical:

This month, I was referred to this internal specialist who is familiar with Lupus
and he thinks that I have most of the characteristics of lupus, but he wants to get the lab results prior to give me medications. That's why I'm not using medication for lupus as of yet. It takes about 2 weeks to get the results and in the meantime I take Migraine medication for the terrible headache I get and now bronchodilator for my lungs.

I feel really terrible and I'm waiting anxiously for the lab results to get my first treatment.

Oluwa
05-29-2009, 09:24 AM
You're very much welcome, Margie...

Lung involvement is common with Lupus...were you treated ever for your lung condition back then?

Before I listed the ones that mention scarring of the lung only..but if you follow the yellow brick road.... http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=291&z=17&page=4 you will find additional information regarding Lupus and lung involvement there...

I hope you rnew medication resolve it for you, or at least ring comfort till you receive a proper diagnosis...

Hugs.
Love,
Oluwa

ashleybaby715
05-29-2009, 10:22 AM
hi margie.

i had alot of problems with my lungs.
i had fluid around my lungs, shortness of breath...and chest pains when taking deep breaths,
i've had spirometry tests, and also full pulmonary function tests.

they're a pain when they ask you to keep blowing out air that you no longer have!!

my symptoms have gotten alot better, thank goodness !
but i think the steroids [[prednisone]] that i take really helpedddd!!

feel free to message me anytime if you have any questions.

Margie26
05-29-2009, 10:52 AM
Hi ashley and Oluwa,

Thank you for your responses.

Yes, I've been treated with a lot of prednisone lung medications like Pulmicort.

Some of them have made me so sick that those were discontinued.

Last year I was only on pulmicort, but I was so sick at the end of the year that I couldn't go see the lung specialist in November for the regular visit.

I have to go back to the regular doc who gave me the treatments yesterday and tell him that I need to go back to the lung specialist, because I have terrible shortness of breathe now in the afternoon.

The thing is that the regular doc or family doc has to give you medications and if it doesn't help, you have to go back before they write a letter for the lung specialist.

Hugs,

Margie

Angel Oliver
05-29-2009, 01:21 PM
Hello and sorry you are having chest problems.I have quite similar symptoms but in the past i had a Pulmanary Embolism so have scarring,but then a year ago my Asthma decided to join in too.I was having chest pain,couldnt breath in or out without pain...needed oxygen..wasnt getting much in.Now on full asthma meds,was on preslidone (carnt spell) which for me helped even though i got all the side effects,but my airways opened and could breath.Now a year on,no 5 attacks a day.....sometimes i have no attacks and not much chest pain.
Hope you Doctor is able to help you with the chest pain and hope you feel better very soon.

love
Amanda.xxxx

dsunshine
05-29-2009, 05:21 PM
Hi Margie
Sorry to hear about your pain. I can say sometimes when I have flare ups I too experience the same pain you speak of in my chest/lung area. My doctor said I am having an internal flare up around the lining of the lungs and that is why when I take deep breaths it hurts or lay flat it hurts or bend over to tie my shoe it is nearly impossible. Don't know if this helps you out...I hope you feel better!

Pearl
05-29-2009, 06:18 PM
So sorry for your troubles. Lung problems can't be ignored. If you don't get answers or relief, find another doctor. Keep searching until you get to the bottom of this.
I'm keeping you in my thoughts and prayers.

Jana

Margie26
05-30-2009, 11:06 AM
Hi ewveryone,

An update on what is happening.

I went to the physician this morning, he is on duty this weekend thanks to God!

I've a serious problem now with the lungs and he wrote a letter for a speed consult with the lung specialist next week! I'm a bit scared, let me tell you that :hissyfit:

I couldn't sleep last night and when he examined me, he looked worried.

I'm still having problems to breathe today. Thank God I have Ventolin to help in the meantime with the breathing, but the chest pain doesn't go away.

Hugs,

Margie

Angel Oliver
05-30-2009, 01:10 PM
Oh im glad you are going to be seeing a specialist soon.I know its so frightening when you have trouble breathing and with pain.The things you can do to help is try not to panic.Panic can worsen the breathing.Just breath slow and rest allot.Keep puffin on your inhaler when you need it.Do you have a peak flow metre? A tube to blow into to measure your breath? Check it when you feel you are getting worse.If it gets too bad please dont hesitate just call 911.
At the beginning of last year i was where you are at but mine was asthma.Now with a nebuliser and plenty of the right medication...im breathing much better.
I hope you too breath much better and without pain very soon my friend.Thinking of you.

lots of love Amanda.xxxxxxxxx