Sjogrens and lung disease

[Breathless035]

Does anyone with sjogrens have lung problems? I've been breathless for the past six months, had lots of blood tests which didn't show much.

I am breathless doing any activity and have to lie down and catch my breath. Anyone had similar?

Are pastilles/spray helping? Would you mind sharing what they are? I’m suffering from a dry mouth and it’s driving me absolutely up the wall. I’ve tried various otc sprays/sweets but not found they’ve made a great difference. Amazing how something that sounds so insignificant can be such a nuisance…

The most recommended ones in the Sjogrens forum are Xylimelts which you can buy from Amazon. But - if you have very severe Sjogrens like me and don’t produce any saliva at all they can be problematic as you stick them to your gums and they gradually dissolve but I can’t dissolve them as produce no saliva at all so they end up getting stuck and painful to remove. So it really depends on how dry you are. People in the Sjogrens group absolutely love them though.

@user31908734289

The GP prescribes them but i think you can buy otc if you wish.

Salivix Pastilles - it's just something to suck that is sugar free really. Sugar free chewing gum is also acceptable if you prefer. I don't use these as my mouth will suddenly get dry and close up with no warning so I need immediate relief.
https://salivix.com/

Salivix Spray - I use this one a lot as it stimulates saliva immediately. It does say it's peppermint flavour but I swear it's lemon (juice). I would get the same reaction from squirting a jif lemon down my throat 😂

https://salivix.com/salivix-spray/

@Breathless035Glad you’ve spoken to the rheumatologist but please make sure you continue to chase them up for the relevant tests. Make sure if you’re going to the doctors and they’re using an oximeter to check your o2 levels to point out that you’re breathless on exertion.

With me while I’m sat down my o2 levels are around 95%-97%. But moving around can drop to 78% or lower.

Thanks that's a great tip. I'm definitely following up. My Dr is booking an X ray, I'm doing the Peak Flow Tests and my Dr was also talking about further blood tests. I will ask for more oxygen tests.

Thanks - yes tried them. They’re okay but I find Oralieve spray works better for me. Going to try the other spray recommended below too. I’m not diagnosed with Sjogrens yet GP says may be perimenopause…

Thanks - will give them a try. Have got on quite well with Oralieve spray, but was hoping someone had a magic cure! GP wasn’t particularly helpful, apart from suggesting giving up caffeine, my one remaining joy…😁

I had an plmonary embolism and am also still coughing if I laugh - also very tired and get out of puff quickly. I have never been asked back for a second scan - they gave me 3 X rays before the CT and kept telling me it was fine!

Is coughing when laughing a big flag? I've had pain in the top of my right lung for ages but they don't want to do another CT as I reacted badly to the iodene.

I don't have Sjogren's but I do have psoriatic arthritis autoimmune disease, and I find similar to you that my airways are awkward and winter is far worse. At Christmas I could barely walk without my muscles seizing lack of oxygen and spoke to GP and got a type of steroid inhaler - it was amazing!
I'd also do as others have said and ask for support from secondary care as with other AI issues they start collecting in your body

Also just thought, when I was suspected of PsA I heard on Mumsnet about Facebook support groups, so maybe see if you can find a Sjogrens support group, mine has been amazing! I tend to use the UK ones as the system / drug names etc are comparable

How long ago was your PE and I’m presuming they’ve started you on blood thinners?

I actually had a PE a year before the ILD diagnosis which is why I was sent for the CT scan. I know after my PE I had pain and tenderness for a long time after and was pretty exhausted; out of puff and did cough. It could well be that you’ve still got a lot of inflammation there and it just takes time to recover, but I would be straight back down to the GP if anything changes or worsens.

Nearly 2 years ago now - they only had me on thinners for a few months as I was low risk. I am still in pain in the other lung though, really feel humidity and have a few other symptoms. Had loads of bloods done but really think I need a scan (not another useless X ray!) and feel like I'm being brushed off constantly.

If i’ve learnt anything since being diagnosed is that you have to learn to be your own advocate and don’t be fobbed off.

You know your own body and if something still feels wrong after all this time then keep going back down to your GP. Sounds like you could do with some LFTs as a minimum - presuming they’ve ruled asthma out too?

I actually had to get to a stage where I stopped worrying what the GP/ consultants thought of me and still do, doesn’t make me popular though 😄

I've been doing the peak flow tests and they've been pretty consistent: 600 twice a day.

I've sent the test results to rheumatology and will send them to my Dr but I'm really not feeling very well.

I feel absolutely exhausted and in pain.

Finally had an X ray and I have a lung infection and need antibiotics. 9 months with an infection!

Let’s hope you start feeling better soon and pleased to hear that there was nothing else going on.

I'm delighted it's not more serious but annoyed it took so long to diagnose because I obviously feel awful.