Scleroderma & Raynaud's UK (SRUK)
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Trouble with nasal passages

Hello everyone

Just wondering if anyone has had very dry nostrils, with traces of blood in the mucus? It's been going on for some weeks, mucus can be dry and at night impedes my breathing. During the day it's more like having a slight cold but inside my nostrils it feels sore and tight. I have limited scleroderma and Raynauds. Seeing the rheumatologist in a couple of weeks time but it would be helpful to know if anyone else has experienced this, and what you did to alleviate it.

Thanks everyone for reading.....roll on some warm weather for all of us 🌻🌻

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Hi there, you sound like you have the same or similar issues with your nose to me. I have had issues with my sinuses for ages, although I seemed to have a brief respite last year from about Sept-Jan and then it came back again. Left nostril bleeds most of the time, often quite big bleeds first thing in the morning when I sit up and blow my nose to clear the blockage. Every night I need to have Olbas oil on a tissue or Vicks on my neck. Every morning I wake blocked up with a coated tongue. I always carry a tissue, and can always blow my nose. Post nasal drip going on. My ears often feel like I am under water and whistle. I mentioned it to my Consultant and said it was just another symptom I was living with. She was insistent on sending me to the Ear Nose and Throat Consultant for further advice, investigation/treatment so I am currently waiting for an appointment to see someone.

I am not sure if it is inflamed tissue in my nasal passages which has then weakened the walls of the sinuses making them bleed, or perhaps there is a telangi there that is bleeding. I have them on face, lips and hands to mention a few places so it is quite likely there is one or two that might be causing a problem.

All my best

Lucy xxx

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Hi Lucy, thank you.....Yes, one nostril is permanently bleeding slightly and it is worse when I blow my nose first thing in the morning. I've had a few telangi recently, the first for ages. I'll put it on my list for when I see the rheumy at the end of this month. I'd be interested to hear what the ENT person has to say.....and think I will ask for a referral to one as well. Thank you so much for this,

Wendy

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Hello Wendy and Lucy,

I have been meaning to ask the same question for a while so I am glad you raised it here. I am suffering with limited Ssc and Raynauds and having the exact same issues with my sinuses. They don’t bleed often (used to back in my teens but They were cauterised) but certainly get sore as if my nostrils have significantly worn out. I also have regular blocked nose overnight which badly affects the quality of my sleep. (Pls let me know if you have any solution for this). When I’ve been seen by a ear-nose- throat specialist, they don’t see anything abnormal other that that I have a generally thin/small nose (but that was never a problem before Scleroderma kicked in).

I have also developed more allergies simulataneously with the scleroderma - and I never had allergies before.

When my nostrils start to feel sore, I tend to use an ointment called “rhinolex” which I apply overnight - I get it from abroad but it is effectively a greasy ointment which helps alleviate the sore sinuses

I’d appreciate if you both can share any other ideas on how to work with this problem - for me the worst is the blockage overnight and the associated dry mouth.

Tanya

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Hi tanya1981

F or dry mouth and throat I use Biotene mouth spray and Biotene mouth gel at bedtime it works great for me. I also take Rx Evoxac to make my cells produce moisture. I hopes this info is helpful..

Best wishes

😊🌸

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Thank you, honeybug,

I will check these out- hopefully they are relatively harmless:)

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Hi Tanya, I don't have anything that I especially do, other than as I said above about going to sleep with Olbas Oil or Vicks. I guess I try and keep the room a lower temperature so it isn't stuffy and just sleep with more hot water bottles. I leave a vent open in the windows. I don't use anything too scented on myself or to wash clothes in, and I don't tolerate scented candles or air fresheners. Air conditioning makes it much worse but generally I don't go into many places with it. Sometimes I do steam inhalations. I try hard to leave my nose alone and not blow it too hard, even when it feels really blocked because that is likely to make it bleed and then it gets more irritated and more snotty! With time I have become more tolerant of it...it is just another (bl**dy irritating symptom) that I am living with day to day. The thing I dislike most is waking with a mouth coated with gunk, and having the urge to clear your throat, or feeling like your ears are whistling and under water.

I was interested to read what Honeybug had written about the sinal washes, but I am also a bit reluctant to add yet another self care ritual that I need to do to manage scleroderma...there are already seemingly hundreds of the things to just keep functioning...you know what I mean...constant moisturising of skin, lips, etc; diligent maintenance of teeth, exercises, making sure I balance activities and get enough rest, having multiple gadgets to enable me to do everyday tasks...and on and on....! ;)

I am going to be interested to see what the ENT consultant has to say when I finally see them.

Lxxxxxx

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Hi Wengc

I have Raynaud Phenom and Sjogrens. I frequently have bloody crusted nostrils here is what I use. I do nasal flushes with a bottle that has a twist on cap with a tube inserted in the center. You make a home solution of 1/8 teaspoon each of baking soda and table salt. Mix it well in 1 cup of distilled water only (sorry I’m still new at this technology and don’t know how to unbold this type) heated in the microwave for approx. 25 seconds on high in a microwavable glass measuring cup. Transfer the solution to the bottle and apply the cap. Lean over your bathroom sink place the bottle cap end to one nostril and squeeze the bottle until half of the solution is used. Repeat the process on the other nostril. Lean over the sink again and tilt your head from side to side until the excess water runs out. Then blow your nose to remove any remaining debris or water. This procedure can be done twice daily. It cleanses out the nose and sinuses while it moisturizes too.

You can also use OTC saline solutions kits...that would be pricey for everyday use. My ENT said to use petroleum gel but I’m allergic so I use a cream Bactroban 2%. Just apply as directed a little to each nostril. This keeps the nostrils moist in between flushing and while sleeping.

I also use RX Evoxac to make my cells produce moisture.

I hope this info is helpful. RXs are used for multiple conditions these days.

Best wishes for relief.

😊🌺

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Hi there, thanks very much for this and sorry not to reply before....internet problems, I will take a copy of your post with me to the docs as mine has got worse and is driving me nuts...I really appreciate your reply,

Best wishes Wendy

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My pleasure Wendy

I sure hope you get relief soon.

😊🌸

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My pleasure Wendy

I hope you find relief soon.

😊🌸

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