Asthma and Sjogrens

[Judie P]

Been trying to find some information on the forum, but it all looks like it is years ago.  How much is asthma involved with Sjogren's?  My NP says that I have mild asthma and is starting me on an inhaler.  She is also sending me for a sleep apnea test.  I have never had any lung problems before, so is this something that is associated with Sjogren's?  I have Primary Sjogrens.

[cccourt1942]

Hi Judie,
    I reacted to your post and am going to reply honestly..and because I've been through something similar to you.  The only difference was a pulmonologist diagnosed me. 
    First, I am not sure Nurse Practitioners are qualified to dx asthma.  They could suggest "reactive airway disease (mild, etc)" without inhale testing..or send you on to a pulmonologist.  The pulmo will put you in a chamber and you breathe through a series of requests and your breathing,etc is carefully measured.  The mild reactive airway disease is a dx for treatment but a "holding" dx before you are full blown asthmatic or COPD.

    I was dxed as "mild reactive airway disease" yet TREATED for asthma.  There is no specific treatment for the former.  It's been complicated when I tell doctor's why I keep a rescue inhaler yet stopped taking my daily inhaler  (btw: several years ago now).  Eventually one of my physicians, going thru my meds asked me about the way I dispensed those inhalers, I stated what I just said..and she said...oh yes..that makes sense.  The bottom line was I had Sjogren's when I saw the pulmonoloigist...I was suffering the dryness...difficult to swallow...difficult to open my mouth..take a breath, and keep on without being bone dry ..and being able to continue taking deep breaths and being measured inside that  chamber.  The results were irregular and why it was described as "mild".  None of this could be explained until I was dxed with the SjS.  The last year before my dx my time on the treadmill was less and less and less...not because I couldn't walk..but because I couldn't breathe without drinking the whole time...then I'd have to stop to pee..etc, etc. 
    The next thing I wanted to tell you is I refused to go thru that sleep testing.  Basically the same thing.  Doctors who advise that for SjS patients have no idea the problems we have with keeping our tongues in proper placement and sleeping with closed mouths.  I knew I was not waking up with the choking, snoring, etc. I wake up too much at night to go to the bathroom...so I have much light sleep...and would know.  Also...my grandchildren would tell me!!  ha, ha.  I have known one successfully apnea tested and treated (w' machine) who loves it.  Amazingly enough, she does NOT suffer the dry mouth.  In fact, in our large group, she was the only one who had no symptoms like the rest of us.  and by the way..I am 74..and she was at least 10 years older than me.  Her husband would drive her to the meetings...and attend meetings with her.

     Do you take one of the saliva meds?  I mean, is your oral region affected greatly with the disease? Mine is.  All I am saying that is a big leap from NP asthma diagnosis to Sleep Apena testing.  Or...I think so.

Let us know how it all works out.
ccc

[Judie P]

Thanks for your reply.  I guess I should have made my request clearer.  I did go through the pulmonary tests as you described.  This was almost three months ago.  A Pulmonary doctor did review my results and sent the final report to my Rheumy.  I needed a pneumonia 13 shot and had blood work done (requested by the ENT) last week.  Therefore I had to see my nurse practitioner for the shot.  She read the report from the pulmonary doctor to me today.  So all on the up and up.

My husband was in the room and is worried I am going to get interstitial lung disease because he heard about it when a woman at one of the Sjogren's group stood up and stated that she had it.  It never left his mind.  He has sleep apnea and wears a CPAP mask at night.  Since he stated that I snore very loudly, my NP decided to go ahead and have me do the sleep apnea test anyway.  It was not the NP's suggestion.

All I had to hear was the word emphysema and COPD and I heard nothing else.  I had to have the NP go over it again.  I trust her because she was the only one who has believed I had a problem and discovered the Sjogrens.  She stated that she did not know why the pulmonary doctor stated the word emphysema as there is no indication of it.  However, she is going to check with the doctor and if there is any question, she will call me.  She said the report stated that I had mild asthma.

Hence my original question!  Thanks again.

[jazzlover]

I have mild asthma, but I'm pretty sure it's from MCAS. I used to get it whenever I was ill, but now I also get it when I'm exposed to inhalants like scented crap!

As long as you are being monitored, you should do OK.

[Deb 27]

I don't know if it is associated with the SJS but I also have mild asthma. However, when I got on GERD meds and went gluten free, the asthma cleared up. I used to be on inhalers but I am ok now. I still have the occasional shortness of breath, but just occasionally. I have to stay away from strong smelling chemicals, cleansers, stuff I'm allergic to and cigarette smoke. I've had allergies to pollen all my life. I think there is a  difference between asthma and COPD. I think the tests you had would have shown it if you had COPD. Did you ever smoke?

[Kathy57]

Judie,

I have asthma too, and I was diagnosed by an Allergist/Immunologist.  My Rheumatologist thinks my asthma is probably related to my Sjogren's, and I believe that full heartedly!  My asthma is much worse when my Sjogrens is worse.

The drier I feel, the worse my coughing and Shortness of breath are.  If I can reduce the dryness and infections/ illness, then my asthma improves.  I have been feeling better since I have been using the Ubiquinol.  Either that or I'm just lucky to have a reprieve. 

Right now, I am feeling well enough to take a break from my asthma meds and that is saying a lot!  Of course the weather is changing and I don't know how long this will last.  I will have to enjoy it  while I can.

Good luck to you and I would try to control your symptoms to the best of your ability.  That will help you all the way around.😉

Kathy

[Carolina]

I have CVID, which is a form of Immune Disorder at the bottom of all  my problems.

Those with CVID often develop lung problems, it turns out.  And I'm one of them.  I have small airway obstruction, and I am suffering from a sort of asthma which keeps my coughing all night long.

I cough so hard I get dizzy and 'see stars'.  I have asked for a referral to a pulmonologist.

This condition did not start until I was 72 if you can imagine.   So far the list of 'conditions' related to my Immune Disorder keeps growing and growing, and either I have 'walking pneumonia' or a form of asthma right now.  I imagine it is the asthma since I don't get infections since I started the IVIG treatment for my CVID.

The key to all immune disorders is to treat the symptoms, and to try as hard as possible to get an accurate diagnosis that might provide more treatment options.

Asthma is an Immune Disorder, as is Sjogren's.  Immune disorders seem to cluster together.  Ain't we got fun?

No, sad to say.

But we forge ahead, sharing with each other and supporting each other.

Hugs,  Elaine

[Judie P]

Thanks for all your replies.  I never had asthma until now.  I do react to strong scents.  Deb 27:  I have never smoked nor did my family.  However, living in New York as a young adult meant spending time in smoke filled dance places.  LOL  Could not dance for the life of me now.  LOL  My NP said that it was weird that when I eat a lot of sugar, I cannot breath as well.  I think it makes sense for someone who has SJS.  My NP said I could probably get more information from my Rheumy on this, which I am due to make an appointment and see.

Thanks wolfmama, love and hugs, sjoggiemama

[Judie P]

I don't know how good this website is, but I did find this article under it.  Looks like the National Institute For Health is involved in it and it was put online in November 2016.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5112692/

[irish]

The asthma with the Sjogrens is always interesting. I was diagnosed with Asthma in 1980 with a Methocholine challenge test which was positive. I am not a cougher I am a bronchoconstricter. In otherwords, my chest gets very tight. The only time I think I have coughed with my asthma was when they did the challenge test.

The interesting thing about the autoimmune disease is that our body also has other issues that are so inter-related. The immune deficiencies and allergies are really related to autoimmune also. I am of the belief that there is a fine line between all these issues. Thus if we get Sjogrens or some other autoimmune disease we probably are going to show up with an immune Having a doc who has a heads up on your condition and is watching for the development of other symptoms is the key. Good luck. Irish

[jazzlover]

Judie .. Do a search for "Mast Cell Activation Syndrome"