Don't worry about active vs inactive. Whatever is causing your problems is an obvious active process. Therefore IF it is Sjogren's, your lip biopsy will show the appropriate amount of infiltrates. Like I said, you don't have to 'build up' a disease process. So your idea that your won't have enough "yet" is not going to be a problem.

Well noted. Thank you so much.

Hi echoes,
I read in one of your older posts, you are using CPAP. Was this prescribed to you because of your lung problem or for sleep problem? If for the lungs, does it help you? Do you use it often or just when necessary?

I remember you mentioned that you are taking other inhalers (on top of Symbicort), do the other inhalers help you?

I dont think that Symbicort is helping me much. I read that if one has a restrictive lung problem, inhalers are not much of a help. Though the doctor gave me an inhaler for emergency purposes, but he said that it will surprise him if I will benefit from it.

I have not yet been officially diagnosed of anything, pending the result of the biopsy this July 31.

Be well.

Please forgive me en bloc if my memory is not correct about my recollection of one of your posts, you mentioned that you have diaphragm problem?

How does diaphragm disfunction diagnosed?

Thank you.

i have an albuterol rescue inhaler
i take advair and spiriva everyday. i never took symbicort.
the cpap is for sleep.

I had breathing tests specific for this. I can't for the life of me think of the name, but it was like MMA & MMB or something like that. The detailed test involved pushing air out against resistance and likewise breathing in with resistance. I'm sure I'll remember after I post this reply...lol

...why did the test/s ever considered? What was your symptom/s that made your doctors thought of giving you these tests? I'm sure its not a routinary test for all patients with breathing problem.

I wish not to appear too strong to be suggesting tests to the doctors without knowing the symptoms. But at the same time I want to be pro active in my treatment. Sometimes doctors need also a "little help " from us patients..:winky:

Thank you.

The pulmonologist knew I had Sjogren's with neuro problems...including muscle weakness in other areas. There was also suspected myopathy/myositis, so he tested for the diaphragmatic weakness based upon that and SOB both during and after mild exertion and when laying down. I was also a chest breather vs diaphragm breather, but I'm not sure how important that was....just remember him mentioning it.

The myopathy symptoms have improved over the last year. Most of my current SOB is known to be cardiac related. I'm sure there is still some diaphragm weakness, but I'm thinking it's mild.

Hi. I want to update you with my bronchoscopy and with the result of the biopsy.

Good news and bad news.

Good news : I dont have abnormal cells. All kinds of germs, bacteria, viral, fungi have been tested but all negative, except for a little Klebsiella (not sure of the spelling). Doctor explained that this kind of bacteria is common to all of us. Doctor said I can stop using the inhalers as my airways are clear.

Bad news: Doctor does not know what is causing the nodule.

Diagnosis : Restrictive Lung Disease

I am just as scared to this condition as it does not respond to any medications.

The doctor seems to believe that my lung condition is an autoimmune disease related. I am seeing the rheumatologist this week for the follow-up.

My nerve pain has been having a field day for weeks now and so is my SOB. I think my nerve pain has gone into another level of pain, meaning more painful!

I dont know what I am doing that makes all my symptoms worse. I follow supplements religiously, eating healthy foods and exercise (even sometimes my body seems to just lie down).

THis combination of SOB and prickly skin and painful feet/legs is just really so much.

could the nodule be an encapsulation by your lung of something you inhaled which it wasnt able to eliminate? for instance i have microscopic glass shards in my lungs that continuously caused microscopic cuts and which in a few places have become encapsulated as a defense mechanism of the body.

how was the broncoscopy? was it painful? a broncoscopy could be in my future somewhere down the line. hopefully not.

Does he really think the nodule is causing the SOB? It doesn't sound like it's large enough to do so...to the level of your SOB.

If it was autoimmune related interstitial lung disease they would have been able to tell from CT scan and/or biopsy so good news it's not that.

I'm not sure why he says it's not treatable if he doesn't know what it is...and he has only tried one thing so far (Symbicort). What's his plan?

I hope your rheumy visit provides more answers. I would really encourage you to get the lip biopsy if the rheumy thinks it may be a possibility.

It sounds that encapsulation is good because it limits the growth, is it?

The procedure didn't hurt at all, but well I was asleep. I only had a little throat soreness after the anaesthesia wore down. I was warned that there might be some blood but thank. God there was none. There was no activity or food restriction. The procedure will show abnormalities in the airways and lung arteries.

But, just like any other invasive procedure bronchoscopy poses some major risks.

He explained to me that I have that I have air trapping in my lungs.

I don't know how come he wasn't able to determine based on the cat scan or biopsy if autoimmune mediated.

He said that since my airways are clear inhalers will not do me any good. I read from the intrrnedt that restrictive lung disease does notrespond with inhalers.

I hope so too that rheumy will (should) help me with my condition. I keep my options open with regards to lip biopsy.

Does the level of SOB is commensurate to the size of the nodules?

how many nodules do you have? a few nodules should not make you short of breath.

it could be ok the encapsulation or it could continue to grow. that is why they are monitored for a few years to see where it is going.

I don't think one or two nodules would cause that much SOB. I imagine he would have told you if the nodules were that large or numerous to be causing the SOB. Did he say what is causing 'restriction'?

What test did he determine air is trapped or that there is restriction? Is he considering O2 at this point? If inhalers won't help, then what's his plan? You NEED some relief!! I can't imagine feeling SOB all the time. Is it still improved when you lay down?

The most common Sjogren's complication involving lungs is interstitial lung disease...which can be seen on CT or biopsy so you must be clear of that...thankfully!!

I failed to ask that question. I know I should have asked that question but I forgot.

Based on your experience, how large should be the area or how many nodules enough to cause SOB?

i dont know the answer to that question as to how many nodules or the area involved before a person would be expected to experience shortness of breath. a few no, many yes, how many exactly has never been explained to me. shortness of breath could also relate to the cause of the nodules.

i have read that a concentration of nodules in an area is usually related to infection such as TB. sarcoidosis would be diffuse and not confined to a single area.

I don't know the day, but know sometime this week you see the rheumy. Please let us know how that goes.

Is the pulmo planning on supplementing with O2 to give you some relief? If not, what is his plan?

He did not mention if my nodules were large enough (and I didnt not ask - duh).
He said that my number in the PFT for the Airway Resistance is 255 (and showed me the report - which of course I dont understand the numbers). He said something about the exchange of oxygen in my lungs....

No, he did not mention anything about O2. It was like saying the burden of knowing about what is causing the activities in my body falls on the rheumatologist.

Is there a special test to know if there is air trapping or ristriction, other than the PFT?

I will call the clinic if they have any other alternative inhaler for me. When I asked if I should continue the inhaler, he said that Symbicort is a strong stuff that it should benefit me. Symbicort does not improve my breathing nor the emergeny inhaler Albuterol.

en bloc, I am sorry, but I am confused with this statement:
The most common Sjogren's complication involving lungs is interstitial lung disease...which can be seen on CT or biopsy so you must be clear of that...thankfully!!"
Did you mean that if its Sjorgren's complication, it will show in my CT or biopsy as ILD?

Tomorrow is my rheumy appointment. I will continue to see this rheumy until I get the approval from my insurance for a second rheumy. I was told though that this 2nd rheumy that I am referred to will take about 3 months to set up an appointment for a new patient.

No, the pulmo did not mention about oxygen. He believes that my lungs is still considered within normal level. But, he acknowledges that the function has steadily declined since 2008. The frustrating part is he could not see in my tests the cause of hte decline.

I am so concerned about the decline of my PFT. I dont know why my body does not show anything for the doctors to properly address.

My specimen has been tested for TB. But, the initial result shows negative. They are still continuing to culture my specimen because it takes months before some bacteria to grow.

I feel relieved that Sarcoidosis is diffuse. I think mine is not scattered, its confined in one single area.

As for a test for restriction or air trapping: That's why I asked. I didn't know if it was based upon a special test he did or if it was just a conclusion he drew.

As far as I know, ILD is somethings that can be seen definitively on CT or biopsy. It is also the most common (and serious) lung complication of Sjogren's. Since your CT and biopsy did not show it (and it would have if you had it), I'm thinking you don't have this complication...which of course I was thankful for.

You dont realize how grateful I am to all your replies.

Yesterday, I had my visit with the rheumatologist. It was a very frustrating visit that I cried after the doctor left the room. (I hate it when I lost grip of myself.) My emotions have been building up for several months now for getting no definite answers from my doctors.

My pulmo is basically passing me on to the rheumatologist for finding nothing from the inflammation and scarring in my (right) lung. He said that the specimen has been tested for all kinds of stuff that is possible to cause an infection in the lungs but I am negative except for a little Klebsiella. He assured me that this kind of bacteria is not causing my lung any harm but just to make sure I am on Augmentin for 10 days. He said that he has a suspicion that it could be an autoimmune related. When I called in later to ask if there can be any alternative other than Symbicort, his PA said the other 2 available medicines are teh same as Symbicort. If Symbicort does not work, the other 2 will not possibly work as well.

When I mentioned this to the rheumatologist, she said: "Your pulmo keeps on saying it could be autoimmune, but I dont see anything on your results that says you have autoimmune. Dont label yourself with Sjorgren''s unless it shows".

I am fully aware about the difficulty of diagnosing autoimmune diseases, but my frustration is more like a feeling of 'I am boxed against the wall'. The doctors could not see anything. It would have been easier if the bloodworks show something. The on-going pain of neuropathy, the shortness of breath and stomach problems, well, fill my day.

I think it was based on the PFT.

Oh God, thank you so much for saying that ILD will show on the CT.

Did you inquire/discuss the lip biopsy? Does he think Sjogren's is even a possibility where the lip biopsy would be warranted?

I'm sure this is frustrating and feeling SOB and having other symptoms make the frustration even more profound.

If you're not happy with this rheumy, I would encourage you to set up the appt with another...even if it means waiting 2-3 months. Do it now. You can always cancel it down the road if you feel better, get answers from another doctor, etc.

Yes she requested for a lop biopsy. I'm waiting for the authorization, then schedule. I alspo requested for another referral to a rheumatologist.

What do u take for ur PN? Do u take gabapentin? I am now on 1200 Mg per day but it seems my symptoms have gone to another level. I'm trying to stay on it for as long as I can because am concerned of reaching the Max dosage too soon.

i agree with enbloc about a second rheumy opinion and i would also recommend that you get a second pulmonary opinion. you cant just continue on with shortness of breath and no treatment.

write down your questions ahead of time and bring them to your doctors appointments.

Do u think that infiltration will show even with moderate dry mouth? Sometimes I have saliva and sometimes there is dryness but not as bad as others would describe it.

I was referred to an ENT for the biopsy.

Yes, infiltration should show even in minimal dry mouth. However, the grading (and subsequent diagnosis) is based upon how much infiltration per 4mm sq area.

I don't take Gabapentin. I tried more then once but got no reduction even on high doses. Right now, I take a small amount of percocet, which only takes the edge off. I have also tried Lyrica and Cymbalta, but side effects were too much.

This is already my 2nd pulmo doc.

My pulmo wanted me to try Symbicort and Spiriva at the same time.

For weeks now, I noticed that I have mild wheezing everyday that is why I was backed to Symbicort.

I read ( Physician Assistant actually said so) that Spiriva will cause dry mouth. I hope it will not make make my dry mouth worse.

Thanks.

At least he's willing to try something. Please let us know if you have any improvement. I would think you'd notice if it will work rather quickly (as in days).

Yes, I will.
Thank you.

I'm sorry you are having such a hard time. Yes, Spiriva can cause a little dry mouth, that didn't bother me too much but it can also cause dry eyes which did.

I wanted to let you know that some doctors are willing to titrate it a little if you do get side effects, people take it every other day or 3 times per week, etc. It has a long half life and still is effective for some people that way. You can ask your doctor about that if you do have problems.

It can take a couple of weeks to start working well, I don't know why.

I've had some problems with the med but they only started after I had been on it a long time and I think they would have been mild and easily remedied if my pulmo had listened so don't worry about the side effects too much, ok?

judi

And the result?...Was wondering if it helped? Also whether the dry mouth was more problematic?

I just got the Spiriva yesterday from the mail. I will start today. I will update you.

I noticed though that my breathing is little better with the aircon on or when there is a breeze. But, when its hot and humid, my breathing is bad.

I know I am asthmatic from childhood until my college years. I remember my last attack was during my graduation. All I know was I had this wheezing sound everytime I had an attack. However, I was not aware if the wheezing was when I inhale or when I exhale. Recently, I have more of that wheezing sound again. I am now aware that the wheezing is when I inhale. However, when I read about the asthma symptoms, it all says that the wheezing is when the patient exhale. Is this true to all asthmatics?

Thank you.

i also sometimes have wheezing on inhalation.

Certainly there can be an asthma component to all this, but IMO it is not the main cause of your current SOB. I just can't see it causing you continuous problems like this has now and not be improved with inhalers/treatment. And it certainly wouldn't improve when you lay down if asthma. I really think the fact you have improvement when laying down is key in determining what this is (or is not).

Of course you could do a methacholine challenge test if you want to confirm or rule out the asthma.

I have also an albuterol as rescue inhaler.

I started my spiriva yesterday. Do you take your Advair and Spiriva immediately one after the other or do you space them? I read that the proper way of taking these kind of medicines is to take the combo e.g. Advair or Symbicort then followed by Spiriva. I dont remember reading what is the proper spacing.

Thank you.

My SOB used to disappear when I lie down, unfortunately, it does not apply now. I still have shortness of breath when I lie down. I have not considered the metacholine challenge at this point because of my difficulty breathing.

I am sorry if I mentioned it before, my pulmo said that the diaphragm is okay. He said that if I have some diaphragm dysfunction, it would have shown on hte cat scan - it would have shown as elevated.

I got another rheumatologist - will be seeing her by September.

Thank you.