Unusual med administration method?

[BookNut]

Hi everyone! I have been away for awhile again. Busy with the holidays...but also contending with two downturns in health. The usual nonsense...sinusitis, wheezing, extreme shortness of breath, the whole nine yards. Prednisone, as usual, got me out of the first bout. I decided to avoid pred the next time and did manage to get better without it. The trouble is, these downturns sap my energy...not to mention render me useless for two full weeks or more. So...have been useless for 4 out of the past 6 weeks.

I went to my favorite doctor on Friday. She said she has a few ideas. The one we all liked best was for me to use pulmicort in my electric nebulizer. But...instead of using the mouthpiece, use the face mask instead and inhale and exhale through my nose. Have any of you tried that method?

My doctor says it is obvious that i need an anti-inflammatory because i get better as soon as I am on orednisone and get worse soon after going off it. Her theory is that, since the sinusitis seems to be the main cause of my asthma symptoms, perhaps breathing in a steroid inhalation solution through my nose might improve the chronic sinusitis without the side effects of oral pred, which gives a much higher dose of steroids.

I've only been doing this for two days...but feel considerably better. I will let you know if I get some long lasting results. I would be interested in hearing from anyone who has tried this for sinus/asthma. thanks!

[Dirty Don]

I did the steroid inhalers for a short while...tho they helped, my sinus walls were pretty destroyed and sensitive thus bleeding occurred...so none since then.

[Pete]

I use a nebulizer to inhale an albuterol solution when my asthma gets too active. Gives me quick relief.

[drz]

I use a steroid nasal spray PRN when I have more fresh blood and bleeding from nasal rinses. I think it helps as bleeding seems to reduce or go away in a few days.

[BookNut]

I use a nebulizer to inhale an albuterol solution when my asthma gets too active. Gives me quick relief.

Albuterol helps me when I get short of breath. SOB....what an appropriate abbreviation!! However, it does not help the wheeze that i have on exhalation 24/7/365. It literally NEVER goes away. It is caused by my constant post-nasal drip. So, the theory here is to not only inhale a steroid, but to inhale it through and out of my nose in the hopes that method will slow down the congestion and post nasal drip going on in my nose and sinuses. My current diagnosis is asthma exacerbated by Chronic Rhinosinusitis. I am hoping this works, because the next step is Xolair, and I do NOT like what I am reading about that!

I continue on this forum because friends like you are always ready to help out. I don't have WG....but many of my symptoms are the same. This is a great forum!! Thanks for being part of it!

[BookNut]

I use a steroid nasal spray PRN when I have more fresh blood and bleeding from nasal rinses. I think it helps as bleeding seems to reduce or go away in a few days.

i use a nasal spray..generic flonase...as well. I have not noticed any improvement, but keep going with it. The budesinide (Pulmicort) does seem to help reduce the constant stream of mucus. Thanks for your reply. You are such a great resource on this forum!

[pberggren1]

Hi Jacuie, I have inhaled pulmicort as well in the past. At first I had a syringe that I used to spray it into each nostril. Then I was hospitalized and the syringe broke so one of the nurses said just to nebulize it so I did. I can't remember if it helped much at all to be honest. That was the time, I think, when the M. Abscessus was diagnosed. So, later being on all those powerful antibiotics probably cleared up everything in my body. I had recurring and ongoing sinus infection from early 2009 to mid 2010.

[MikeG-2012]

I'm surprised Phil didn't advocate for some serious sinus irrigation. It helps me keep what's left of my good mucosa (sp?) in decent shape. Also rinses out all the crud that used to be post-nasal drip.

Since I started aggressively irrigating, no more dripping, and upper airway wheezing.

MikeG-2012

[pberggren1]

Ya, rinsing is a good idea. Also Jacquie, did you not take an antibiotic like Avelox for the sinusitis? That is what I am taking now for mine.

[whatthewhat]

When I had severe chronic asthma, I did that (sans face mask) for a while, I think with asthmacort (sp?) It was 25+ years ago...anyway, it did help the nasal infkammation.inflammation.

[BookNut]

Thanks Phil, Mike and whatthewhat. A mixed bag of responses. Looks like some have tried this with various outcomes. I will let you know how it goes. I have had MANY antibiotics, including Avelox. The only one that seemed to help was Bactrim, which was prescribed by my newest ENT based on a culture he took during an endoscopy.

I have been irrigating with a Neil med every morning (twice a day when things are bad) for over a year. Doesn't seem to do much good for me, unfortunately.

[MikeG-2012]

I have been irrigating with a Neil med every morning (twice a day when things are bad) for over a year. Doesn't seem to do much good for me, unfortunately.

One bottle won't do anything when there is a flare up or infection going on. I'm currently at 3 liters two times a day running through my sinuses. Granted, my sinuses are a mess, and it takes that much to even keep them reasonably clear. So one 8 ounce bottle is not much, considering that your sinuses may hold about 4 ounces together. My wife even runs a full liter through a couple times a week to moisten here nose and keep her sinuses clean. I would consider upping the volume a little for a couple weeks and see if the increase helps you.

You gave me shivers at the mention of Avalox. Had the SEVERE tendon issues with that antibiotic. NOT FUN!! Could hardly walk for a week after stopping taking it. OUCH!!

[drz]

Neil Med advocates increasing amount of salt and soda in their rinses for tough sinus cases. I usually use about two packets per squeeze bottle. A higher concentration of Alkolol might also help with tough sinus problems. It feels cool anyway.

[MikeG-2012]

You just reminded me drz! NeilMed now has a 16 ounce bottle that might be better for some folks with wegs. More volume at once and less refills to get more through.

i think the term is hypertonic who you double the amount of saline/baking soda in the rinse.

I still mix my own with pickling salt and baking soda. 1 teaspoon salt and 1/2 tsp baking soda to 1 liter of filtered or distilled water. Much cheaper that way. If I travel, I use the zip lock pill bags you can get at the pharmacy for my measured out home brew. Haven't even been stopped by TSA when flying with all those little white powder filled baggies in my carry on luggage. (-8. I also make sure that my prescriptions are in the same compartment as well as an empty nasal rinse bottle in with the baggies.

[BookNut]

Ya, rinsing is a good idea. Also Jacquie, did you not take an antibiotic like Avelox for the sinusitis? That is what I am taking now for mine.

Yes...I have been on many different ones. The most helpful was bactrim...the first course of 21 daysI took. I am in another downturn this week and started on it again. I took ONE pill, and within an hours I was the color of a tomato from the top of my head to the tip of my toes. Fortunately no throat swelling. I forget the name of the one they switched me to. It never ends i guess.....But we all keep going. I am so glad to have this group, even though I don't have WG!

[BookNut]

You just reminded me drz! NeilMed now has a 16 ounce bottle that might be better for some folks with wegs. More volume at once and less refills to get more through.

i think the term is hypertonic who you double the amount of saline/baking soda in the rinse.

I still mix my own with pickling salt and baking soda. 1 teaspoon salt and 1/2 tsp baking soda to 1 liter of filtered or distilled water. Much cheaper that way. If I travel, I use the zip lock pill bags you can get at the pharmacy for my measured out home brew. Haven't even been stopped by TSA when flying with all those little white powder filled baggies in my carry on luggage. (-8. I also make sure that my prescriptions are in the same compartment as well as an empty nasal rinse bottle in with the baggies.

Great idea. i have been away from the list for awhile. Yet another downturn. I am taking your advice and doubling the dose AND doing it twice a day. Sometimes I wish i could turn off the damn faucet...errr...nose. However, my new technique of inhaling steroids through my nose seems to simply make it all stick up there and down in my lungs making me chronically short of breath. So, the constant nose blowing and post nasal drip is the lesser of two evils I guess. I will give using the face mask and inhaling the steroids one more try....but will reduce the dosage to once a day instead of twice and see if I can get some sort of balance going.

[MikeG-2012]

Jacquie: My ENT had me add vials of Pulmacort/Budesonide (usually what goes into nebulizers) into a NeilMed rinse bottle a few months ago to get more steroid penetration into the sinuses. That seemed to get better results for me when I had MASSIVE inflammation in my sinuses. You might want to ask your doc about that method if you aren't having very good results otherwise.

[BookNut]

Jacquie: My ENT had me add vials of Pulmacort/Budesonide (usually what goes into nebulizers) into a NeilMed rinse bottle a few months ago to get more steroid penetration into the sinuses. That seemed to get better results for me when I had MASSIVE inflammation in my sinuses. You might want to ask your doc about that method if you aren't having very good results otherwise.


SOOO interesting! How frequently did you do that? Once a day? For how long a period of time? Did you also mix in the baking soda/salt mix? One ampule of budesonide in 16 oz of solution?? I will email the info you send me to my allergist and ask if i can try it. I am getting discouraged because all the post-nasal drip is causing severe asthma flares. The downturns are coming on about every 4-6 weeks now and they knock me down for almost two weeks at a time.

i am SO appreciative of this information.

[MikeG-2012]

SOOO interesting! How frequently did you do that? Once a day? For how long a period of time? Did you also mix in the baking soda/salt mix? One ampule of budesonide in 16 oz of solution?? I will email the info you send me to my allergist and ask if i can try it. I am getting discouraged because all the post-nasal drip is causing severe asthma flares. The downturns are coming on about every 4-6 weeks now and they knock me down for almost two weeks at a time.

i am SO appreciative of this information.

It was mixed in with 8 oz of saline/baking soda mix, yes. I did it twice a day for about three weeks. Strengths of the Med was different to start with. I don't know that the doseage was but the box of Budesonide was purple for the stronger dose and orange for the lower dose. I use the orange box for regular asthma symptoms and that is "Budesonide 0.25 MG/2ML nebulizer solution". Purple box was larger/higher than this one.

[pberggren1]

I have also used Pulmicort for my nose too. At first I used an atomizer with a syringe to apply it in the nose then later I also used the nebulizer to breathe it in.

[BookNut]

Phil and Mike,

I am so glad to get this info. I have contacted both my doctors and they gave me the green light to give it a try. I started last night, and it DOES seem to be making a difference. though it is way to early to tell of course. My hope is that it will continue to work when i am completely off my current prednisone taper in about a week. I usually have 2-3 weeks of feeling semi-ok after i stop the pred, followed by a week going downhill. Then i get SOB and get worse until i start the pred again. i am SOO hoping to put an end to this cycle. Again, I am extremely grateful for the help!!

[annekat]

Just now seeing about NeilMed having a 16 oz. bottle! I will be looking for one, since I can't afford a WaterPik right now, unless I find one at a thrift store. Adding things to the solution is interesting too, whether steroids or whatever. I used to experiment with this, way before I ever knew I had Wegs. I remember adding a few drops of Goldenseal tincture and other herbs that were recommended to me as having antibiotic properties.

[JenG]

Jacquie,
My ENT has prescribed a sinus nebulizer where I nebulized a steroid and then followed with 2 seperate antibiotics also through the same system. I did this regime two times a day for a month and it worked extremely well for me. To takes topically, I think for many of us, is a wonderful way to go as we don't know if oral antibiotics cause too much stress on our bodies creating our "flares." I see you are now diagnosed as an honorary WG member but also see that you still have ongoing health issues so my guess is your body has been through enough with meds that something "topical" and not oral may be a treat!

good luck,
jennifer

[BookNut]

Thanks Jennifer. Tell me about the nebulizer. Is it a regular asthma nebulizer or something altogether different? I did use my asthma nebulizer with a mouthpiece for awhile without any real improvement. At my doctor's advice, I started using it with the pulmicort via a face mask. That was better. The nasal rinse so far is doing a much better job than any of the other methods. Not to mention that it save me tons of time, since I do nasal rinses all the time anyway. But I am always interested to have another method in case this does not prove to be the ultimate answer for me. I would love to hear back from you. Thanks!

I have been using the rinse for a little over a week now and have not felt this good in almost three years. Keeping my fingers crossed! :rolleyes1:

[BookNut]

Just now seeing about NeilMed having a 16 oz. bottle! I will be looking for one, since I can't afford a WaterPik right now, unless I find one at a thrift store. Adding things to the solution is interesting too, whether steroids or whatever. I used to experiment with this, way before I ever knew I had Wegs. I remember adding a few drops of Goldenseal tincture and other herbs that were recommended to me as having antibiotic properties.

Would love to hear more about Goldseal tincture. Do you still use it? Any other herbs?

Also - I am chuckling at the new Avatar. You have a floor lamp that looks exactly like mine. Great minds think alike I guess!:thumbsup:

[annekat]

Would love to hear more about Goldseal tincture. Do you still use it? Any other herbs?

Also - I am chuckling at the new Avatar. You have a floor lamp that looks exactly like mine. Great minds think alike I guess!:thumbsup: You can buy goldenseal tincture at health or natural food places, in health or natural food sections of regular grocery stores, at places like Super Supplements, etc., or online. I'm thinking it should be about $10-15 for a two ounce bottle, though it's been awhile since I bought it. I haven't used it since I've had Wegs, no particular reason except that I then knew I had a bigger problem than just sinus infections. I might try it again now that things have settled down, just to keep things fresh in there and forestall any infections. I would put several drops of it into the 8 oz. NeilMed rinse bottle along with the saline solution and just rinse as usual. Another tincture I tried that was said to have antibiotic properties was Yerba Mansa. I got my info from a guy at our farmers market who was selling these preparations. Now there is a different guy there with a whole different set of stuff, most of it made from plant materials of the Pacific Northwest. These would not include goldenseal or yerba mansa, I don't think, but do include things like fir, cedar, oregon grape root, and devil's club. Might share more when I know more.

Glad you like the new avatar! Yeah, the lamp was from Goodwill and I bought the shade new. It looks like I have pred cheeks but this was actually pre Wegs. I was just a little chubbier, I guess. The pic was taken by a sneaky photographer friend who thought he was funny, without my knowledge. He came over to take pics of my new kittens but snuck that one in and I didn't see it until he sent me the pics. i don't know how long I'll leave this one up, but I've been using it on Twitter for quite awhile.

[mishb]

Also - I am chuckling at the new Avatar. You have a floor lamp that looks exactly like mine. Great minds think alike I guess!:thumbsup:


This new avatar looks like you are being interrogated - are you under police suspicion Anne ??? :flapper:

Jacquie, I love reading that the nasal rinse is making you feel better - that's awesome news

[Alysia]

This new avatar looks like you are being interrogated - are you under police suspicion Anne ??? :flapper:


https://i.chzbgr.com/maxW500/4923644928/h4D05999B/

[annekat]

This new avatar looks like you are being interrogated - are you under police suspicion Anne ??? :flapper:

Jacquie, I love reading that the nasal rinse is making you feel better - that's awesome news Nope, wasn't being interrogated, just sitting on the couch in my humble abode unaware that some clown was sizing me up as a subject for a pic. It seems to work better on Twitter than it does on here, as the pic is a little smaller. Although I see it is not that big on here, either, which is good.