Nasal Douches: Hello All, Would anyone who... - Vasculitis UK

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Nasal Douches

HiveMind profile image
19 Replies

Hello All,

Would anyone who has used a nasal douche let me know how they got on with it? Was it successful? Did you have any issues. Are you using it long term? Generally what are the pros and cons? Is it worth the bother?

My ENT consultant has suggested that I use one as my nasal passages are quite inflamed and it's something he thinks (!) may help.

Thank you.

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HiveMind profile image
HiveMind
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19 Replies
Nadine99 profile image
Nadine99

A lot of my husband's WG/GPA problems exist in his nose & sinuses. He's had WG for 5 years and has been douching for nearly that time too. He just signed with a new ENT specialist who wants to rid the infection and is using a new concoction in the nasal bottle. Sea salt, bicarb of soda, sterile water, Johnson Baby shampoo & Pulmicort nebules. He uses it 3 times a day, & ensures the bottle is cleaned properly every day. It helps to keep his nose free from crusting, infection & inflammation. Due to see ENT in 2 weeks when he might add an anti biotic to the bottle depending on swab results.

Certainly can't do any harm to use it, you should have no downsides, just up.

Give it a go, best wishes

Nadine99 profile image
Nadine99

If only it was that easy

HiveMind profile image
HiveMind

Thanks Nadine. Its interesting that you mention Johnsons Baby Shampoo! My husband sometimes suffers with styes on his eyes. His doc mentioned that washing his eyelids (whilst in the shower) with JBS would help. It does!

(I have CSS or EPGA btw - 7yrs)

HiveMind profile image
HiveMind in reply toHiveMind

EGPA!

Hi, I use NeilMed sinus rinse along with the pre prepared sachets (which make the solution) and rinse most days. Can feel the difference when I neglect to do it for a couple of days. It was recommended by my ENT. Cheers.

EOLHPC profile image
EOLHPC in reply to

Me too. ENT recommended neilmed & I love all their products now. The spray tins are great for use daily (no mixing)...I use the yellow high strength spray tins morning & evening...+ every 3rd day I rinse with the sachets.

Nadine99 profile image
Nadine99

You don't need to buy the sachets for the NeilMed bottle, just use Sea Salt & make it yourself.

Before using Johnson Baby Lotion, husband used to have an oil prescribed in France but couldn't get it here so used the Lightest Virgin Olive oil in a dropper once a day. Again helped soften the crusting but now it's over to the new regime.

in reply toNadine99

I have tried making my own but I prefer the sachets as they really don't sting as much as a home made salt solution. I also find them more convenient to use.

I guess it comes down to personal preference.

alybill profile image
alybill

I use the NEILMED sachets on a daily basis and I have found them to be excellent. Since using them my frequent sinusitis has gone, the nasal crusting is still present but reduced. I haven't use any add ons in my prescription and so cannt comment on the them but if recommended by ENT Drs I would happily incorporate it into my daily douch. Best wishes

Fennella02 profile image
Fennella02

I gave just had my first ENT appt for nasal crusting and subsequent perforation. It's been very unpleasant and painful. I have been prescribed Sterimar isotonic nasal spray which gets right to the top of the nose and sinus area and Nasonex steroid spray. Both are very easy to use - just a few squirts am and pm. Despite my scepticism, the improvement in just 3 weeks has been amazing - no crusting, pain etc. I'm delighted. Good luck with whatever method you choose. Clare

Mooka profile image
Mooka

I had an operation on my sinuses in May, and the ENT doctor has told me that I still need to use the Neilmed 2/3 times a day for the rest of my life. I didn't realise that the crusting can form as high as the sinuses. When the crusting builds up it causes a blockage and then turns into an infection. I felt that I should have known/realised this before as have suffered from recurrent infections. He too advised me to make a solution from salt and bicarb. I do find that if my sinuses aren't blocked the brine can came out of my nose unannounced when I lean forward which can be embarrassing.

Good luck.

in reply toMooka

Yes Mooka, I have experienced that embarrassment too, but it not as bad as when a big crusty comes lose and flies out and you can't find it and then later discover it sitting proudly on you collar!! So very glamorous. :-)

Mooka profile image
Mooka in reply to

Oh Raspberry_tea I have yet to experience that one. That is something to look forward to!

DOUCHEIT profile image
DOUCHEIT in reply toMooka

Hi I had cancer in my ethmoid sinus and now have to douche everyday and probably for the rest of my life. But I have been a bad boy as I have never used the solution to put in the neilmed. I tried baby lotion once and just got bubbles. I find I have to rinse at least 10 bottle fills to get everything out.

I wrote about this in my blog and even created an awareness YouTube video... igoggle.wordpress.com/2017/...

But my main realisation is the ticking time bomb of old age.. potentially this problem could either kill me by not being able to clear it and I choke or suffocate in crusty mucus, or I drown by trying to clear it as I would be unable to stop the water going down the back of my throat!

I would like people to collaborate with me, share tips and experiences either on here or my Facebook page Doucheit!

Thanks in advance

HiveMind profile image
HiveMind

Thank you very much everyone for your responses. It's been very interesting finding out how everyone copes with the nasal douching. My ENT specialist is recommending it just for inflammation as I don't have any crusting. I'll give it a go and see how I get on.

Does anyone find that anything makes their nasal inflammation worse, or better? I'm finding I'm having periods of dreadful nasal inflammation and periods of manageable inflammation. I was wondering if it's something I'm doing/not doing, eating/not eating, etc?

Any information would be helpful.

Thank you so much everyone. 😘

I also use Otrivne nasal spray which was recommended by my ENT. That's good for days when the air outside irritates my nose. I have had a cream in the past I think it's called Naseptin? That was on prescription from ENT and was great for the little sores on the inside of the nose. Vaseline was also suggested to me by ENT for the dryness. Other than that, get rid of any perfumes that irritate your nose and you could try keeping diary to note when it occurs and see if it's related to something you eat or do. For example; I avoid certain cheeses and mustard because of the painful reaction in my nose.

Good luck.

HiveMind profile image
HiveMind

Thank you raspberry_tea, that's very helpful.

tintinrob profile image
tintinrob

It was suggested to me, I tried it, found it an uncomfortable experience but not as bad as a nasal biopsy. If allergens is your problem, it will wash them out till the next time you breathe in.

Your nasal kit, sinuses etc is self-cleaning through evolution so I can't see nasal douche being a long term solution. As per my rather lengthy reply to a previous post , I've just found that the ventolin I'm using for asthma is making my sinuses bad.

The question should be, 'what is getting in your sinuses to recruit the mast cells / eosinophils and cause the inflammation and snot build-up?

Can you remove yourself from the source, or remove it from you? If you get lots of bugs, up your vitamin D3 to > 4,400 iu a day and my lung consultant has suggested taking zinc (citrate, gluconate or picolinate) as well as this helps T-cell function, he says.

All the best!

Rob.

tintinrob profile image
tintinrob

I find that Otrivine makes my asthma worse, some preservative in it (benzalkonium chloride) gets into the lungs when you inhale it into my nose and then I wheeze a lot. Not for long term use!

Rob

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