The Australian Sjögren's Syndrome Association
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Sjogrens or allergies ❓❓❓

I wonder if anyone with SS experiences nasal issues ? I'm on Plaquenil and the paresthesia is better ! Good days, bad days. My eyes are still problematic, using Refresh frequently! But my nose is driving me crazy 😳There are times when it's extremely dry...but frequently it feels moist, not enough to blow but enough to be bothersome...SS or allergies 😳

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Hi Bettyboop , i have had nasal problems, burning in nose with some sores . I found using a saline nasal spray ( sterimar ) really helped as it cleanses and moisurises the nose so helps when blowing nose. I hope you find something that helps as it is really annoying, good luck xx

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I,too, am using saline. Sometimes effective 👍🏻

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I just keep using it in the morning and before bed and occasionally if bad in between ! If things are very troublesome maybe you should see an ENT consultant 🌸

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Yes, I get sinus infections too. All of these nasal issues since diagnosed sjogrens.

Google BSSA British Sjogrens Syndrome Association. Joining that group has helped me a lot. They offer a helpline too. Plus, very knowledgeable magazine quarterly.

Whatever Sjogrens symptoms present, the advisers at BSSA have probably heard it before. Therefore, they will probably offer you helpful advice too.

As the autumn winter approaches, I pray its not a case of, here we go again for my sjogrens, because nasal n sinus symptoms are at their worst for me, during such weather changes.

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Thank you so much 👏🏻 Here's to a symptom free Fall 👍🏻

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Absolutely - For several years, when I didn't know that I had Sjogrens, I would get sores inside of my nose and it would be really dry. The sores would break and bleed.. The only thing that I found that worked was Pilocarpine once a day. More might work, but it raises blood pressure so I can only take it once a day.. It cleared the issues up almost immediately

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Ty ❤️

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More than likely it's Sjogrens have you tried Fess Saline nasel spray.

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Not familiar with Fess ❓I will look for it ‼️

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I think allergies and SS are kind of related. I've found several things help.

I've had good results from some inexpensive natural products. I take a homeopathic remedy called Natrum phos that has greatly reduced my mouth and sores. It’s available at 1-800homeopathy.com.

We have a couple of doctors who are dry-eye specialists. I recommend finding one. Something they suggested was taking fish oil which made a big improvement in my dry eye. Also, Theratears has an eyelid wash product which he recommended and helps me.

The sores and eczema, I think, are related to what I eat. So I've eliminated many things from my diet that cause inflammation, eczema and digestive upset. This has helped me feel a lot better. For me those things are all grains including non-gluten ones and high acid foods like tomatoes and citrus fruits. If I'm generally feeling good, I can cheat a bit and have a taco or gluten-free cookie. Try a paleo or elimination diet in which you eat only few bland foods and gradually add one food every so often to see how you feel or react.

We have a couple of doctors who are dry-eye specialists. I recommend finding one.

I found an essential oil for sinus congestion that helps my sinuses to drain so I can avoid sinus drugs and use only saline nose spray which is cheaper. Be sure that you are using the saline spray in a way that the solution gets into the back of your throat for best results.

Finally I just started using a salt inhaler. I was skeptical but it has made a big difference in my sinus stuffiness and nasal drip at night. I sleep longer without waking. You just breath the air twice a day from the inhaler which has been sitting around the Himalayan salt. I found it online for a minimal cost.

Hope you find some of this helpful!

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Thanks so much for all your suggestions 👍🏻

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Germany

Hi

I have an extremely dry nose with sores and use nasal oil. Have SS and there is nothing the doctors have done so far to help me with this dryness. Tried different sprays and other oils. The oil gives no relief really from the aching dryness.

Nothing really helps.

Seeing another ENT specialist next week with a bit of new hope.

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