Idiopathic PN,

I have used Symbicort 160/4.5 for about 3 years now for adult onset asthma due to Sjogren's. I do not use a chamber...never even brought up or offered by the doctor. I simply exhale completely, then press the inhaler as I breathe in slowly...then hold it for 10 seconds or so, then exhale. DO MAKE SURE to rinse your mouth after use.

Why did the doctor feel the chamber was necessary?

From my experience, misuse of inhalers is very common.

The 160 strength of Symbicort is the stronger one too.

I think her doctor gets the Aerochambers as samples, to help prevent thrush and other side effects.

The aerosolized drugs are suspended in the air, and if you inhale well, you get them properly. But Idiopathic claims shortness of breath, so maybe her doctor suspects she cannot do it in one breath?

I find this doctor to be quite helpful and professional, and concerned to provide the Aerochamber, under these circumstances. Most doctors don't give a hoot!

I dont really know. Maybe - it was routine to give that samples away.

So I can use direct from the Symbicort directly? As Mrs. D said, its hard to synchronize the inhalation and the pressing of hte cannister.

The doctor requested for a Sjorgren's test, among other tests. It may be negative again. Let's see.....How does Sjorgren's affect the lungs?

Thanks.

I was looking at the website of the Symbicort and the 160/4.5 is actually for COPD. If I am not mistaken, there is another product of Symbicort which is for asthma.

The doctor mentioned that I should clean my mouth after inhalation to avoid the thrush.

Actually, it was my husband who noticed that the doctor and his Physician Assistant were thorough in their examinations/questions. I waited for 2 hours, but its worth the try. I was just a little disappointed with the technician operating the machine for the PFT. He lacks enthusiasm in encouraging the patient to perform better. In my first 2 experiences with PFT, the technicians were so enthusiastic and so motivational to patients. I remember, they also gave me another try for a particular stage of the test to get a better result.

Thank you Mrs.D:hug:

Chest CT Scan
 

I understand that this forum is not for lung problems. Please forgive me if I use it for my purpose. Please bear with me on this.....

My question are :

1. Does COPD, by any cause - chronic asthma, smoking, chronic bronchitis, auto-immune diseases, emphysema, exposure to toxic enviroment, etc., show on CT scan?

My last scan dated January 2011 shows two scars which might have been caused by the ileocecal T.B.

2. Swimming may be one of the better exercises for the lungs, but normally the pools are heavily treated with chemicals. Does using swimming pools acceptable for patients with COPD?

Thank you so much for your answers.

The other Symbicort is 80/4.5. My pulmonologist had me try that one but it wasn't as effective in controlling symptoms. However, I have reduced the dosage of the 160/4.5 from two puffs twice a day (normal dose) to one puff twice a day and seem to be doing okay with only a few incidents of needing the rescue inhaler.

Sjogren's can cause adult onset asthma and interstitial lung disease. It can also complicate simple upper respiratory infections as tissue can be lacking in proper moisture and not clear as easily causing pneumonia, etc.

Dear Mrs.D,

With your comprehensive research and knowledge on supplements/medicines and treatments, would you know of any supplements that are good for the lungs?

Also, are there any supplements/medicines in my list that can be damaging to the lungs? My current medicines/supplements are as follows:

1. Multivitamin
2. Vitamin C
3. COQ10
4. Benfotiamine
5. ALCarnitine
6. VitaminE
7. Calcium
8. Vitamin D3
9. VitaminB12
10. R-Lipoic
11. SAM-e
12. Epsom salt - for soaking
13. Epsom It Lotion
14. Omega 3,6,9
15. Synthroid
16. Gabapentin

Mrs.D, is there a particular supplement to counter the effect of teh steroids in my nerves? I am very concerned about the side effect of steroid, but as you know, I dont have much choice on this. I need to use the inhaler for my breathing.

Thank you, always:hug:

Well from your list, only the gabapentin can affect breathing, that I know of.

If you use your inhaler properly you should have few side effects.

Long term use over years...that is when side effects may appear.
Alot depends on technique, and how much you deposit the steroid in your mouth. Hence the Aerochamber to reduce that.

If you reduce spasm in your bronchi, you will breathe easier, and
the medication will get in more easily as well.

Particularly for echoes and en bloc, and those who are willing to share their insights :

My pulmonologist gave me several tests for autoimmune diseases.

As you know, my Sjorgren's, RA and Celiac/Gluten have been negative in my earlier tests for the PN. But, I have some symptoms for these conditions, though, it may not be conclusive. Example, for Sjorgren's - I have dry eyes but no dry mouth, for RA - I have nodules in my fingers and painful but findings was OA, for Celiac/Gluten - my result was negative, but I have neurological symptoms.

I still waiting for the results of the recent tests .

I am interested to know if the lung problem is autoimmune mediated, and treatment has been administered, is the the lung problem resolved (or at least stop the progression)?

Thank you.

Sorry to be slow in reply (I was unavailable yesterday)...and also vague with my response.

But there is really no easy answer to your question. Without having a diagnosis of the exact lung condition no one would be able to answer about treatment, it effectiveness, and/or stopping progression.

Asthma (even adult onset from AI disease) is treatable. Interstitial lung disease is different based upon BOTH severity and what is the underlining AI condition. Without more info, it's impossible to guess.

Let's reassess your question after you get more results.

Hi en bloc,

No need to apologize.

My appointment with the pulmo will be in July 23. The waiting is a torture.

The pulmo gave me a note on his prescription pad which says:

" Breathing test today shows some trend to reduced airflow; also it shows some restrictive to your breathing. We will review CT scan. We will check labwork for "arthritis" like reasons for restrictive of your lungs."

I read the difference between Obstructive and Restrictive Lung Diseases. I am so concerned that it seems I have both. I feel like fainting due anxiety.

I feel like I am boxed against the wall.

I got a copy of my CT scan dated June 15, 2012.

Below is the complete paragraph comparing the recent with my January 1, 2011 scan:

"In the interim the patient has developed progressive fibronodular densities in the medial segment of hte right middle lobe which is greaether than on the previous examination. This could represent superimposed infiltrate and pneumonia on chronic lung changes. The remainder of the examination in unchanged. The left lung remains clear. The heart is normal in size..."

IMPRESSION (June 15, 2012):

"Progressive fibronodular opacity in the medial segment of the right middle lobe which could represent an infectious or imflammatory process. The examination is otherwise unchanged and unremarkable.


Please, what does this mean?

Hi Ideopathic PN,
IMPRESSION (June 15, 2012):

"Progressive fibronodular opacity in the medial segment of the right middle lobe which could represent an infectious or imflammatory process. The examination is otherwise unchanged and unremarkable.


Please, what does this mean?

it is something that should be checked after a period of time by another ct to see if it has changed or is gone. i have numerous nodules in my lungs some rather large that i have checked by ct at regular intervals, at first every year and now every 2-3 years. dont stress over it too much. mine has not changed in years now. yours could just be infection related. get another a year from now if for nothing else than your own peace of mind.

as far as stress, i know that stress can make a medical condition worse and probably will due to resultant inflammation and how taxing it is on our energy reserves and immune systems. i just dont believe that stress causes these conditions though. anecdotally i have found that these type of conclusions by doctors that your symptoms or condition are due to stress is made far more with female patients than male patients. i just dont buy it.

with the problems that you are having it is natural that you would be worried and stressed. there would be something wrong with you psychologically if you werent. its not good or healthy for you longterm, however.

get a cat scan in a year, take the medication that was prescribed, monitor how you are doing breathing wise and relax a little and wait for the next cat scan or pulmonary test. there really is nothing much else you can do in the meantime except live as healthily as you can.

i dont know if i mentioned this or not but there is a support group for pn somewhere in the jacksonville area that might be able to give you ideas on what they are doing, medications, testing and other doctors. if you are interested send me a message.

Hi echoes,

Yes, I am interested to know the support group in my area.

You dont know how much reassuring your email was. You are are right, I am experiencing anxieties but it is hard to avoid it. I am really trying so very hard not to be afraid but it keeps on creeping especially when the pain is on and breathing is hard.
Anyway, one day at a time.

I dont want to ask this question because I am scared of the answer but I have to face this head-on. Is fibronodular the same as intertitial lung disease?

It seems my result says that I have an ongoing inflammation. I dont know where my imflammation is coming from.

Thank you very very much, echoes.

Idiopathic PN, I feel like I may be responsible for much of your anxiety with respect to your medications. Please note how many people take these meds with no problems, the chances of your developing issues are likely very small.

People in my family are very sensitive to all kinds of drugs, we all struggle. I've had many/most of the side effects that are listed

"If you experience any of the following call your doctor immediately"

for a long time and my doctor just basically ignored them. I see other people who have been taken off the medication or changed to something different, I was not. I told him a year ago that I felt I might have to start Neurontin and he made a face and looked out the window..not a lot of help! I may be wrong about some of the things because I'm not a doctor and have tried to figure it out myself.

I have never seen a neurologist and really have no idea what is going on.

judi

Judi,

I am taking now Symbicort, even with much hesitation at first, but yes I am taking it. It is something that I need to do. I am hoping that it will work for me.

My concern now is the fibronodular densities in my lungs.

did you say that you had tuberculosis in the past? fibronodular densities can be from bacterial infections such as TB as well if you breathed in a foreign object or had other infections since. i will pm you with the PN support group information.

Yes, I was diagnosed to have had ileocecal t.b. As far I could remember, I never had cough when I had that ileocecal t.b. But, I had a couple of bad bronchitis after that.

It says in the ct scan result that there may be "inflammation in process", I may have Sjorgren's. That is my only suspicion because of dry eyes. Lately, I am experiencing dry mouth. I dont know if my dry mouth, though, is caused by any of my medications or supplements.

I have to wonder about sarcoidosis.... Did you have an ACE test when you had your blood work?

Are you using the Symbicort daily, not just when you have a problem? Is it helping yet? You should notice improvement fairly soon.

I feel certain the pulmonologist will look into both sarcoidosis and Sjogren's when you see him next month. Until that time, maybe the symbicort will help reduce your symptoms

I am not sure if these tests could be related to ACE: C-Reative Protein or Serum Protein Electrophoresis?

Thank you Mrs.D:hug:

Hi en bloc,

Yes I am using the Symbicort very religiously, 2puffs 2x a day, and wash mouth immediately. Since June 11, till today, the improvement is not as you describe it to be "fairly". I am still waiting...

In 2010, I developed an inflammation in my (right) lacrimal gland. It was biopsied and thank God, it was benign. I remember, the opthalmologist commented about my dry eyes then. But, I never felt the dry eyes symptoms until after the biopsy. The inflammation was so stubborn that it took 3 sterioid injections before it subsided. The symptom of that was excessive eye discharge.

I dont know if this may be related to all these conditions I have now. I just thought to mention it.

Thank you en bloc.

No, the ACE test is different.

http://labtestsonline.org/understand...s/ace/tab/test

Hi en bloc,

I forgot to mention in my earlier reply to this post, that I always have SOB. So, your statement of ".... not just when you have a problem" does not apply. :D

My husband is taking me to the beach every weekend to expose my back for the sun and breath (hopefully) fresh air. I remember when I was growing up my father used to take me to the beach (for a year) hoping that the sun and fresh air will help my asthma. Its one of my many beautiful memories with my father.

Hi echoes,

I extracted your post from another thread:

one of the reasons i had cat scans of the chest for 3 years in a row and now every other year is because i have numerous lung nodules. they are keeping an eye on them to see if they grow or more develop. they are also keeping an eye out for sarcoidosis being that i have the nodules. the group i am in has 10x the rate of sarcoidosis as would be expected from the same age groups in the general population.
im surprised they could diagnose you so quickly with sarcoidosis. for most of the people i worked with it took a while. have you had a lung biopsy?
because a person has sarcoidosis in one organ such as lungs, eyes, etc doesnt mean that the other organs are affected. so if you have it in your lungs doesnt mean that it is causing damage in your nerves.

I am sorry if I appear to be like "investigating" your condition, I dont mean any malice, I just want to get insights...
have you been diagnosed of sarcoidoisis or they just want to watch out for it? was your SOB sudden or gradual?
From the 1st scan to the 3rd, was there any new nodule?

In my case, there has been a progress from 2011 to 2012. Although, I was experiencing SOB on and off since 2008, but the pronounced SOB came about when my neurological symptoms came up. I am thinking that what triggers my PN might also be the same that triggers the growth of the fibronodular.

I have been trying to recall now, for several years, I remember that everytime I had a chest x-ray, that scars have been showing, but doctors would not pay attention because they all said its a scar from a previous infection...it sounded that I have nothing to worry. So, for many years the 2 little scars were the same, then why only now that it has progressed. There must be in the recent time that triggered it. I have been trying to think what could be, but unfortunately, I could think nothing.

Thank you.

no i dont have sarcoidosis. im being watched but so far so good. no additional nodules and they havent grown. my asthma came on quickly due to a massive exposure to toxins followed by many months of additional exposure. my pn developed at the same time as my respiratory infections occured over and over and my asthma developed. the nodules were found five years after the exposures and only because it was determined that it might be a good idea to give the group i was a part of cat scans after quite a few others had developed sarcoidosis and interstitial lung disease. i have no idea of when the nodules formed but my guess would be right after the exposures.

I got a copy of the labworks requested by the pulmonologist:

Anca panel
Protein Electro
Sjorgren's Ab, Anti-SS-A/SS-B
Anti GBM IgA
Rheumatoid Arthritis Factor
Anti DsDNA Antibodies, Anti-Jo-1, Antinuclear Antibodies Direct, Immunoglobulin A, Qn
Alpha1 Antitrypsin

Everything is negative or within normal range.

I am back to square one.

Up to 40% of those with Sjogren's have negative blood work. If you have significant symptoms (dry eyes/mouth, fatigue, joint pain, etc) then maybe you should consider being worked up for Sjogren's with a Schirmer's test (to assess tear production) and lip biopsy...which is more invasive and should be considered if the Schrimer's is positive and they believe your lung issues are autoimmune related.

About your shortness of breath. Do you get SOB while sitting quietly, or more while exerting? Have they exhausted the cardiac angle?

Thank you so much echoes.

Is fibronodular same with interstitial lung disease?

Thank you en bloc,

I have mitral valve prolapse since I was in my 20's. I had a stress test in Sept. 2010 and its same. I don't take medicine for it. My BP is okay. I have SOB both while at rest and in exertion but more while in exertion.

While I was actively treated for my lacrimal gland inflammation my schirmer's results were:

May/2011:

Right eye : 3 milli
Left eye. : 4 milli

Aug/2011:

Right eye : 5 mili
Left eye. : 6 milli

I read that anything below 5 is indicative of sjorgren's.
I will see my ophthalmologist next month.

Although those numbers are low enough to be considered related to Sjogren's, they were done during the inflammation of the lacrimal gland. It will be interesting to see what those numbers are now that this has resolved. If they are still low, you should consider the lip biopsy to confirm/deny Sjogren's.

Something is definitely going on with you that's causing the lung inflammation. I feel certain they will find the answers soon.

Thank you so much, en bloc!

I sincerely hope that we find resolutions in all our health problems.

Dear Mrs.D,

In one of your links about neurosarcoidosis, it says that one of the workups is Serum protein immune electrophoresis. My questions are:

1. Is this test the same as Serum protein electrophoresis?
http://emedicine.medscape.com/article/1147324-workup

2. Is ACE the first protocol for Sarcoidosis diagnosis?

I was just wondering if, assuming, Serum protein immune electrophoresis and serum protein electrophoresis are the same, and it was mentioned that it is one of the diagnosis for sarcoid, is it safe to assume Mrs.D that a normal serum protein electrophorisis could mean without sarcoid?

Thank you so much Mrs.D:hug:

I believe the ACE test is done first. It is blood work, and easy to do.

When that comes back elevated, I believe they move on to other tests. (the doctor decides).

I am not a test expert, but I do think electrophoresis is for separating out protein mixtures so they can be individually identified. This test is more complex and hence more expensive. The molecules separate out by weight (hence size) when the current is applied to the solution mixture.

I just asked because I had Serum Protein Electrophoresis and came back unremarkable (which is good!). I was hoping this rules out sarcoid - which is what I am really really hoping for.

Thank you Mrs.D:hug:

I think Glenntaj is the one to comment really on this.

The electrophoresis is showing OTHER things besides ACE for
differential diagnosis.

But having the ACE elevated is necessary for other reasons of diagnosis.

interstitial lung disease is diffuse throughout the lung and not confined to one area of the lung

And--
 

--a serum protein electrophoresis is designed as a screening test for detection of abnormal proteins int he bloodstream, and is designed more to detect rogue antibodies, or M-proteins (monoclonal antibodies), that may be associated with certain blood diseases, particularly blood cancers such as myeloma or Waldenstrom's.

The more specific test is an immunofixation electrophoresis of both serum and urine, which enumerates the immunoglobulin antibody classes--IgA, IgM, IgG--and looks for any monoclonals.

Yes, thanks Glenn!

You see, the ACE test is not 100% specific to sarcoidosis.

So some of the other tests on that list on that link, are differential...meaning to see if ANOTHER thing is present that may elevate the ACE.

And, people can have more than one thing going on anyway.
Sarcoid is not well understood as to what causes it, yet.