I'm a 36yr old male. Had Sjogren's symptoms about 7 years and was diagnosed officially in 2020.
I take hydroxychloroquine, pilocarpine and betahistadine dihydrachloride(dizziness from suspected menieres).
3 years ago in the winter of 2019 I started experiencing shortness of breath. At rest and with exertion - it wasn't significantly worse with exertion however. Saw a pulmonologist who did O2 sat test, peak flow etc but no scans. The consultant felt sure that he didn't hear or see anything and I didn't push for a CT(despite knowing that this is the appropriate scan for sjogrens related lung issues).
After about 3 months it subsided and hadn't returned until this winter. I would say its worse than before - causing light headedness now when it comes on. My PCP has given me a steroid inhaler which definitely helps a bit and albuterol which has been less effective.
Do other people get this issue with the colder weather or is the time of year just coincidental?
I'm sero negative and the pulmonologist I saw 3 years ago said that meant I'm very unlikely to have Sjogren's lung issues- has anyone else heard this before?
It is episodical and not constant, doesn't worsen with exertion and previously resolved itself so I'm unsure whether I can face pursuing another pulmonology referral to be told i don't need a scan.
Any advice?
Hello and welcome.
I wish I had more information. I can only tell you that I do have problems during the cold months. I live in Texas where the winds and fronts bring in a lot of pollen but also, just the cold itself is starting to affect me. I can feel an ache in my lungs or in my back. I think it was 3-4-5 years ago that I was diagnosed with interstitial lung disease. I took it to mean that the scar tissue was building. I was getting CT scans every six months until the practice closed. I am now looking for a new pulmonologist.
I do know that the Dr. said not to let it go because there are things they can give me to help if it starts declining.
Sorry, I'm just rambling.
Wishing you the best,
Marie
I'm currently dealing with this as well. 54 yr old male.
Shortness of breath has been an issue this past year or two. Definitely worse in winter.
Have had pulmonology workup twice and am headed for a third.
It's a weird thing because I actually notice it more at rest than while doing something strenuous.
Doc says it could be the early stages of lung issues ... apparently it can be hard to tell if you have a good fitness level because your body compensates. Wish I had some helpful news other than hang in there.
I appreciate the responses. Thanks very much for coming back to me.
Gorn, I have the exact same issue. Definitely at its worst when I'm at rest. Mine flared up 3 years ago, dissapeared completely then returned this winter. Is yours constant?
Could I ask what workups the pulmonologist has done with you? I had a chest xray, ox sat and the breating tests back in 2019 and everything was normal. This time my doc is suggesting a repeat xray for comparison then a referal to respiratory where I am hoping to get an HRCT for a closer look.
Have you had the CT already? If so, was this normal?
Sorry for bombarding you with questions!
Marie - I hope this winter isn't causing you too much discomfort. I might have to use these new lung issues as an excuse to move somewhere a bit warmer than Scotland! How did your initial symptoms present? Did they remit and relapse or was it more of a progression?
Sending my best wishes to you both.
More of a progression I would say, over 4-5 years, with some months of staying the same.
I first noticed symptoms when I had trouble walking in the store or mall without sitting down often for a rest. I thought it was probably my weight. I was getting winded most every day. I lost a little which seemed to help but not enough.
I'm doing good right now, even with this 'arctic front'. Hard to figure.
Best,
Marie
I woke up today hurting down far into my esophagus , and then feeling lung pain too. I have slept most of the day using my c-pap, and feel a bit better tonight. I have times when I feel my lungs rub together. I get short of breath and then feel better. Winter sure does hit my lungs worse.
susanep
When it is cold out and need to run the heater, my lungs get extremely dry and I feel I can't breathe. The same thing occurs when the humidity is low or our SoCal Santa Ana winds are blowing.
I have been feeling a bit better, but on these March windy days, I have to wear at least a thin scarf around my neck. My lungs have always been sensitive to wind, but I think now it's always been part of these autoimmune disorders.
The stuff that will be flying off the trees will cause a lot of symptoms too.
Hope everyone is getting through all these issues.
susanep
People with Sjogrens need to pursue pulmonologists for a baseline diagnosis and assessment. Docs need to check our peak flow or how we breath with the testing they do. They use inhalers and do their fancy testing before and after the inhalers. Usually they will also do the cat scan at the beginning to get a good idea of what our lungs are like. This is needed so they can have a scan to compare our lungs to a cat scan done down the road with we have some more issues. Can tell the progression of our lung issues this way.
One of the big things that we have is the darned thick mucus that causes our lung tissue to feel like it is sticking together when we breath. It literally is sticking together as the mucus is so thick that it gums up in our lungs. Air conditioning and winter heat do a job on us as the humidity is made so low our lung secretions get even more dry. Our sjogrens causes our lung secretions to be rather abnormal as they are so sticky that can be even hard to cough up. I tell my docs that I think I could wall paper walls with my mucus. Being weird and graphic at times does help docs understand how bad something can be and they also remember us better.
Sometimes the doctors can't tell how sticky our mucus is by listening but we can feel it when we breath. I have been dealing with this for decades and have been seeing pulmonary for 30 years. I am on 3 inhalers and they do help tremendously. I was diagnosed with asthma in 1980 and have been on inhalers since then and then the sjogrens came along over the years..The one thing we need is the steroid inhaler to help control the inflammatory process or swelling in our lung tissue. The other inhalers usually help expand the airways so we can inhale and exhale air easier.
Most of us have an albuterol inhaler for rescue at times when we have tightness of chest that really cuts down on our ability to get a good air flow. Make sure to carry one of those darned masks with you cause they sure help in a large amount of dust and in cold wind. Mask has made my life much easier during snow storms and when shoveling snow.
Be aware that changes in wind, air pressure and temperature plus pollens, chemicals in the air also can have a big impact on our lungs. I have been on Mucinex or actually a generic that I order over the pharmacy counter at Walmart or on line. I will often not take it but when I am having problems taking it really does help to thin down my lung secretions. The brand Mucinex is horribly expensive and the generic on line, etc is so much cheaper. The ingredient is guaifenesin and the normal dose is a 400 mgm tablet. I have a bottle of 60 tabs bought from on line Walmart pharmacy and cost under 4$ the last time I ordered it. I usually buy several bottles at a time as it is much handier.
Make sure to talk with your doctor about taking it with other medications and to find out what dosage you should be on. Get it on line cause sure cheaper and does make a difference. Also be sure to drink water.
Another thing is to make sure your pulmonologist understands that lung issues with sjogrens can be serious and should be not taken for granted.Some pulmonologists have not caught up with the significance of sjogrens and lung issues. We can develop some serious breathing issues if we don't take care of ourselves. Another thing is to get enough physical exercise just by walking. When I started walking this summer a few months later my pulm. said my lungs had improved. I see himeevery 6 to 8 months and more often if I have issues. It is worth it as our regular family doctors don't seem to get too involved with our lung issues as it can get complicated.
Also, as we age and develop heart issues and high blood pressure our lungs and heart, BP can have a lot of interaction and we need to take care of all of these issues for optimum health to help our daily living. Good luck all. meirish
That was a really helpful post Meirish - much appreciated.
I'm still experiencing the same 'air hunger'/shortness of breath symptoms from December. My GP organised an Xray which looked normal and I have a pulmonology appointment next week, though I don't have high hopes after the last one in 2019. Very much doubt they'll order the CT.
For now I'm using my steroid inhaler twice daily and my rescue inhaler through the day. The steroid inhaler definitely does something but I don't find the salbutamol very effective.
Hoping the milder spring weather sees it off but will continue to pursue treatment. The breathing tests would be better than nothing I suppose.
B
I have an inhaler that I have used for years called Atrovent or ipratropium. It is similar to albuterol but is a long acting inhaler that decreases the need for so much albuterol.. The steroid used first decreases the inflammation and then we rinse and swish our mouth to prevent a yeast infection. Next use the Atrovent which expands the airways. These 2 inhalers are good together. Ask the new pulmonologist about this and also tell him you have sjogrens and need a baseline cat scan as people with sjogrens need to be watched closely.
Some of the conditions we can develop can really decrease our breathing and the pulmonologist should know this. Be an advocate for yourself and let doc know nicely that you are suffering and need help....assess the inhalers you are using. Make sure they keep the inhalers on the cheaper side. Some of them are really spendy even with insurance. Also ask the pulmonologist to explain your peak flow to you and ask what the inflammation and thick mucus does to the lungs of a sjogrens patient as you are having more trouble breathing. Stick up for yourself.
I am not trying to be bossy, but I have gone to docs over the years and not been assertive in a kind way and ended up coming home without any more education on what I had or with any treatment that helped. I have learned to be more assertive but have been known to let myself down at times. Take care. meirish
it is hard to be assertive without being too aggressive. Takes practice.
Didn't want to post and ghost in case anyone is having similar symptoms and following this.
Pulmo appointment went as well as could be expected. Spirometry came back with normal results for everything except peak flow, but agreed with the consultant that I'd misunderstood and tried to do a long exhale when it was actually a forceful exhale he was asking for.
Physical examination was totally normal and no crackles observed with the stethoscope.
One thing the consultant said which I found reassuring was that because my symptoms fully resolved 3 years ago before returning this winter AND because they come and go when I'm having them - he feels its very unlikely that I have interstitial lung disease or any worrisome progressive condition.
He agreed to request a CT and agreed that if nothing else, it will be useful to have as a baseline should I encounter more issues in the future. I'll let you know what comes of the scan but for now I'll just continue to use my steroid inhaler and hope it subsides like last time.
Results from my CT came back today - wondering if anyone could shed light on whether I should be concerned or not.
The consultant seems confident that there are no signs of interstitial lung disease or fibrosis. They have found some "small scattered calcified granulomata". The pulmo doesn't sound overly concerned about this, but I was under the impression that if these are occurring as part of the Sjogrens inflammatory process, you would want to address it.
If I'm borrowing trouble here and should be happy that they've said they didn't find anything worrying please feel free to say so.
Cheers,
New Sjo
So glad that you have had good luck at this pulmonologist. I don't think it is unusual to have small granulomata in our lungs. We all breath in a lot of bad air that will cause our lungs to build up a little protection to wall off anything that is irritating the tissues.
If it was anything that needed to be watched docs usually ask for repeat testing in months or year or two. Just an example I recently had that bothered me. When I had my bad Gastrointestinal bleed this winter they did a cat scan when I arrived at the hospital. I was told at that time that I had a few lesions on my pancreas. I naturally perked up at that but at the time I had bigger fish to fry with my terrible bleeding.
So when I saw the doc a few months later I questioned him about this. Turns out the lesions in my pancreas were just a couple and they were very, very small and did not need to be watched. As time passes if I have problems that seem out of the ordinary I will probably drive some doctor crazy and insist on them doing a scan again to see what those lesions are up to. I have had a lesion on my liver for many years that never changes. If you have ever butchered cattle or deer, etc it is interesting to see the lesions that are found in livers, etc. We living creatures so end up with a lot of weird stuff that doesn't cause us any problems. Good luck.meirish
Cattle sounds about right...the ammount of poking and prodding we have to put up with! :P
Really appreciate the reply. Will go to my followup, but that all sounds very reassuring.
Cheers
I am wondering if you have al albuterol inhaler in addition to the steroid inhaler. Albuterol inhaler or the "rescue" inhaler is good to have if you are having episodes of shortness of breath that is not helped by the steroid inhaler.
Sometimes we can have enough inflammation in our lungs that a rescue inhaler is needed. So, that is why I asked the question. My thinking is that if you have a steroid inhaler to help decrease inflammation then it is a possibility that a rescue inhaler could be needed. Just some food for thought. I got diagnosed with asthma in 1091 and have had 2 or 3 inhalers all these years plus have carried a rescue inhaler all this time which I have needed to use occasionally.
My asthma is not bad but the extra humid weather or extra dry weather, extremely windy weather or very cold weather along with barometer changes will give me tightness of my chest and I then need the rescue inhaler. Usually use the steroid inhaler when I get this bad and then the albuterol inhaler. Just a sample of how I use inhalers. Might help you with questions for your doctor. As the years go by we learn to deal with these issues and doctors tell us more info over time that helps. meirish