Author Topic: Sjogrens and Possible Adult Asthma  (Read 1006 times)

lighthouse33

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Sjogrens and Possible Adult Asthma
« on: January 24, 2018, 03:25:12 PM »
A new twist on my story.  About ten days ago, I had to call EMS because I could not breathe.  They gave me a breathing treatment.  Did an ECO which showed Abnormal, Sinus Tactychardia.  I did not go to the hospital. They said it was a panic attack.

Today, I saw my general practioner, because I have had further bouts of not being able to breathe.  She asked me if I had asthma as a child, which I didn't.  She listened to my lungs and said there was some stiffness in them.  She thought it was either a heart and lung problem or a lung problem.

She did a breathing test and listened to my lungs and they were better.  She did tons of blood work.  And is going to consult with a cardiologist who is a friend of our family, took care of both mom and dad and is going to get me in to see a pulmonologist as soon as possible.

I asked her for a rescue inhaler, and she sent in a script.  When it arrived I noticed it is a ventilotor albuterol sulfate for asthma.

So, we will see what all of the testing brings.  I just hope it is not Intertestinal Lung Disease or Pulmonary Fibrosis.

Does anyone here, have Sjogrens and Asthma?
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jazzlover

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Re: Sjogrens and Possible Adult Asthma
« Reply #1 on: January 24, 2018, 06:50:59 PM »
I was just diagnosed with asthma last year. I'm 67 yrs old.

You may also want to consider Mast Cell Activation Syndrome for the breathing issues.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

finallyadx

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Re: Sjogrens and Possible Adult Asthma
« Reply #2 on: January 25, 2018, 09:59:33 AM »
I had asthma as a child and then it "vanished" for years.  A few years ago I had bronchitis extremely bad and went to my drs when I could not breath well - they did some testing and determined I had asthma (again?) and prescribed an albuterol inhaler.  I take it from time to time when I feel short of breath or am coughing allot - like drastic changes in weather or if I get a cold or a respiratory infection.

I have anxiety as well and so for me, sometimes it can be difficult to tell if it is anxiety or asthma related symptoms.  Usually if it is anxiety I do not have a cold and there have been no changes in weather...

I hope they find an exact answer for you - anxiety or asthma  - both scary for different reasons - both have potential treatments for symptoms and alleviation of such.

Sending positive thoughts and prayers.  Keep us posted.
Primary ss dx 2013, plaquenil, vitamin d, iron supplements, vitamin b12, d-mannose for chronic UTI's, magnesium for heart palpatations and Zinc

LadyDi

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Re: Sjogrens and Possible Adult Asthma
« Reply #3 on: January 25, 2018, 05:33:07 PM »
I too was diagnosed with asthma as an adult. It appeared in my 30's, prior to being diagnosed with first a multinodular thyroid goiter and then chronic sinusitis and nasal polyps.

It wasn't until a good 10 plus years later, that I was diagnosed with Sjogrens.

Ever since I can remember, I have suffered from environmental allergies. The asthma came much later and it is a severe enough case that I must take medication (montelukast) and I also have an albuterol inhaler.

I believe that the asthma is connected to my Sjogrens and having an immune system that originally overeacted to the environment around me. It then progressed to autoimmune, with my twisted immune system attacking my healthy organs and moisture producing glands.

So, it is my belief that all of my diseases and conditions are connected and related to my Sjogrens.

Primary Sjogrens, fibromyalgia,partial thyroidectomy/hypothyroid, asthma, chronic sinusitis/nasal polyps, environmental allergies. Plaquenil, Evoxac,Restasis,Neutrasal, levothyroxine, Zyrtec, Singulair, Proair inhaler, spironolactone

Liz D.

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Re: Sjogrens and Possible Adult Asthma
« Reply #4 on: January 26, 2018, 07:00:15 AM »
My story is very similar to LadyDi’s.  I too believe many of our different conditions are all related or at least exacerbated by the Sjogrens.

I was officially diagnosed with asthma as an adult in my early 40s.  But the doctor who diagnosed me feels it was probably something I had my whole life and was never caught by a doctor..  As a kid, I never could run or play sports or any strenuous activity without being short of breath.  I was given a rescue albuteral inhaler then to use from time to time.

But in my late 30s I was diagnosed with Sjogrens and my pulmonary function tests weren’t that great.  Showed small airways lung disease.  By then I was using the albuteral every day.  They have now put me on Flovent which is a maintenance inhaler I use every day.  What a difference it makes.  My breathing is so much better.  I rarely use albuteral at all anymore.

I’m still very careful though about too strenuous activity and I don’t leave the house on these frigid days we have had in New England.  Also stay in during the brutally humid days.  But all in all, I’ve been able to manage my asthma.

Liz D.
54 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Vitamins, calcium, flaxseed oil

Kathy57

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Re: Sjogrens and Possible Adult Asthma
« Reply #5 on: January 26, 2018, 09:34:24 PM »
I was diagnosed with Asthma right before I was diagnosed with Sjogrens.  I believe my symptoms were a direct result of Sjogrens.  I never had any health problems until I developed Sjogrens symptoms after age 50.

I take Albuterol inhaler As needed but take Dulera inhaler daily to prevent asthma symptoms.  I feel much better now that I am treated.  I agree with the people who feel that most of their abnormal symptoms are connected to Sjogrens because they are!🤔

Stay true to yourself and keep fighting for your health!

Kathy
Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer

Cheryl

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Re: Sjogrens and Possible Adult Asthma
« Reply #6 on: February 04, 2018, 07:47:03 PM »
I have also had problems with asthma, beginning just 3 or 4 years ago, and I'm 65.  The albuterol inhaler is what I use, too.  A CT scan done a year ago (for other issues) indicated some fibrosis that had not been there in past scans. (I assume that is due to Sjogren's.)  I'm having a follow-up scan next week, and I'm interested to see how the lung looks now.
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lighthouse33

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Re: Sjogrens and Possible Adult Asthma
« Reply #7 on: February 13, 2018, 09:21:10 AM »
I am going to see my cardiologist this afternoon.  My pulmonologist appointment is next week.

Continue to have breathing issues, even had to call for EMS again, but, they would not take me to the hospital as all test came back clear.

My friend called my neurologist, explaining the situation in a message left for the nurse.  They called in a prescription for Buspar in its generic name which is for panic attacks.  I have not had a panic attack since.  But, the breathing issues continue, and I have had to use my rescue inhaler several times.

This is beginning to get a little old and my temper is about shot.  Hopefully, we can get the ball rolling with whatever tests are needed, so that something can be diagnosed.  I get short of breath on exertion, so something has to be going on.
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Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Liz D.

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Re: Sjogrens and Possible Adult Asthma
« Reply #8 on: February 13, 2018, 05:16:01 PM »
Lighthouse, you may need to get your blood tested.  I was short of breath on exertion and thought it was my lungs.  But it ended up being anemia.  Once I got my iron levels up, I felt better.

Liz D.
54 year old female
Sjogrens Syndrome (diagnosed 2004, but problems started in 2000), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Vitamins, calcium, flaxseed oil

Carolina

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Re: Sjogrens and Possible Adult Asthma
« Reply #9 on: February 14, 2018, 10:19:45 AM »
Dear Lighthouse:

I did not have asthma as a child, tho' it was predicted that I would develop it by age 11 or 12.  Instead most of my respiratory problems got better.

HOWEVER:

About 4-5 years ago I had two episodes of what I realized were 'cough induced' asthma.  This is an asthma attack brought about by severe coughing, usually associated in children with bronchitis, but for me were related to a high level of dust in the air and a feather pillow.  The solution to cough induced asthma is usually some sort of medical intervention.  I, however, had an episode in the middle of the night when visiting my son in Paris (major remodeling caused lots of dust). 

Another solution to cough induced asthma is to STOP coughing.  Hard to do, but I did, and the wheezing and shortness of breath also went away.  Children with cough induced asthma usually cannot stop coughing, because they are so frightened by the wheezing and shortness of breath.  But once I knew what was going on, I choked back the cough, and the episodes subsided.

Recently I was also diagnosed with small airway obstruction in my lungs.  I had a lung test (those tube things you breath into) because I have CVID, and CVID often is associated with lung problems.

I was very surprised to find out I actually had this small airway obstruction, which can be pretty serious, but isn't for me since I didn't even know I had it.  It does explain the slight whistling sound I sometimes have on exhaling (maybe?).

Anything is possible once you have one Immune Disorder, especially Sjogren's which seems to be a 'gateway diagnosis' leading to many neurological problems and other disorders/conditions/diseases.

Regards,  Elaine
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susanep

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Re: Sjogrens and Possible Adult Asthma
« Reply #10 on: February 18, 2018, 10:57:59 PM »
I have asthma, but didn't have it when little. I am 64. I use albuterol, and the discus thing.

susanep
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lighthouse33

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Re: Sjogrens and Possible Adult Asthma
« Reply #11 on: February 20, 2018, 05:00:58 PM »
I saw my pulmonologist yesterday.  The breathing tests about killed me!  When I went back out to the waiting room to be with my friend I could hardly breathe.  The technician gave me an inhaler halfway through the test to see if that would help and she didn’t see much difference.

The doctor said my lungs were functioning at 103%.  That came as quite a shock.  However, he did give me the Breo inhaler which is albuteral sulfate just like my rescue inhaler, but, this lasts for 24 hours.  This is to see if it helps and to see if I have asthma.

My friend, brought up the question, if Sjogren’s is playing into what is going on with my shortness of breath and he said yes it could be.  He said pulmonary arterial hypertension is common in Sjogren’s patients.  That is high blood pressure in the vein that runs from the right hand side of the heart to the lungs.  He said it is like if you put your thumb on a running hose and it makes all tight and the water gushes out real fast.

He said that if something is going on with the right hand side of my heart it should show up on my echocardiogram.  And, that he wants the results sent to. Him, to tell my cardiologist that, because pulmonologist and cardiologists interpret tests differently. 

If something does show up on the echo, he said he would order the cardiologist to do a catherization of my heart.  This would tell him what the pressures are.  And, this is the golden standard for diagnosing pulmonary arterial hypertension.

Of course, if done some googling, and it seems as if those with rheumatic diseases don’t do well with PAH, especially those with sarcoidosis, scleroderma and lupus.  Life expectancies are not very good.

My testing will be done on March the 7th and until that time I am trying to keep an upbeat attitude.  Right now, I would take the asthma over the PAH.

Any thoughts on this?
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Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

MAT51

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Re: Sjogrens and Possible Adult Asthma
« Reply #12 on: February 23, 2018, 04:55:34 PM »
I was about to post and ask this very question. After a lifetime’s worth of allergies including eczema, alopecia anf anaphylaxis, I’ve just had a foul dry cough following a cold in early January and found I couldn’t breathe and had severe chest pain. Chest exam and X-ray should nothing untoward going on in my lungs. After trying extra anti acids for possible reflux I was tested for my peak flow rate which is standard UK fare for asthma. The doctor asked me if I’d ever had asthma before - I’m 55. What I should have said was no not been tested for full blown asthma but always after coughs and chest infections and giving birth I’ve been prescribed ventolin inhalers and left to get on with it.

This time the doctor found my peak flow very low. I’ve been so ill with viral sinusitis, blocked salivary gland and the usual stuff I’d Sjögren’s that he thinks I have post viral asthma. He gave me 40mg prednisone to take for 5 days and the usual inhaler. I admit that for months now I’ve suffered from severe anxiety and bouts of depression  - out of character for me really as usually I’m quite sanguine. But this disease and a comment from a neurologist about my “heightened health awareness”have had me nearly floored.

Not got ILD or other lung problems so a CT showed in 2016. Asthma? My rheum phoned to speak to me at my request because I wanted to come off Cellcept after a year. I’m fed up with worrying about skin blemishes and dizziness and tremors and pulsatile Tinnitus and getting infections. We have no way of telling if it’s working. With SFN the potential benefits are questionable and she has now advised me to stop. She says drugs like Pilocarpine and Carbisteceine are contraindicated did asthma. So I need to find out as if it’s all Sjögren’s then I am sufficiently debilitated by this outbreak of oral and nasal dryness to try something new.

The steroids have so far improved my airflow and got rid of the pain in my heart area. But I admit i an scared by increasingly bad small neuropathy and tremors and extremely low blood pressure during the night. The puffer and steroids might be working as my peak flow has gone from 200 - 375 over the past few days. But still I’m feeling lousy with tremors so hope to persuade my GP to refer me for another carotid Doppler test. Last one showed mild disease 3 years ago. Maybe they should be looking at pulmonary hypotension and atherosclerosis more rather than obsessing on ILD or pneumonia. It’s so scary not being able to breathe well and not being able to sleep from this problem. My blood pressure has been as low as 76/45 overnight lately. You aren’t alone in wondering if Sjögren’s is actually causing secondary asthma - I’m wondering too!
« Last Edit: February 23, 2018, 04:59:32 PM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

lighthouse33

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Re: Sjogrens and Possible Adult Asthma
« Reply #13 on: February 24, 2018, 01:00:07 PM »
From the many articles I have read online, it appears that many Sjogrens patients are being misdiagnosed with asthma when in fact they have pulmonary arterial hypertension.

Two things, I am doing better on the Breo inhaler, but, when, I was shopping in Walmart yesterday, and I started to rush a little, I noticed the tightening in my chest, and knew if I didn't slow down, I was going to get short of breath. Ah, the old exertion problem!

Second, almost, three weeks ago, I started Buspar, the generic form, for anxiety, and it is doing wonders for me.  Mentally I feel great.  No feeling like I am tied up in knots all the time. I am also undergoing counseling.  My good friend suggested I get some help and she has a friend who is a counselor and off I went.  I'm also doing an anxiety meditation that is great. 

As to the tremors, my neurologist has always said that my polyneuropathy and my tremors are secondary to my autoimmune disease, Sjogrens.  She put me on clonazepam almost ten years ago for them.  It is also good for anxiety, I am allowed to take a half a tablet twice a day.

I also have the balance issues and the ataxia, again all due to the Sjogrens according to my neurologist. 

Back to the pulmonary artierial hypertension.  It is important to catch it early.  When you do, you can slow down the progression of the disease.  Unfortunatley, again from what I have read, most of the time, people don't know they have it and by the time they get the diagnosis they are in the later stages of the disease.
« Last Edit: February 24, 2018, 01:01:43 PM by lighthouse33 »
Female
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Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

lighthouse33

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Re: Sjogrens and Possible Adult Asthma
« Reply #14 on: April 10, 2018, 02:27:11 PM »
I got my official diagnosis of asthma last week.  The lung doctor upped the dosage of m main inhaler (Breo) and told me to use my rescue inhaler twenty minutes before any activities.

I passed my cardio stress test.  No, heart problems were found. 

So, now the comes the hard work of asthma proofing the apt. Ordering all new bedding for ashmatics.  All new clear and free cleaning products. 
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products