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BookNut
05-21-2014, 01:37 PM
Thought I would let you know that I this new to me medicine is working quite well for me. It comes in a capsule, which I dissolve in my water/salt/baking soda mixture. It is much cheaper than the budesonide I was using, and seems to be more effective at clearing my sinuses.

pberggren1
05-21-2014, 02:33 PM
Do you have stubborn crusties that are hard to get out? Where would I find either one of these?

BookNut
05-21-2014, 03:58 PM
I DO suffer with the crusties. Maybe you and I could collaborate on a cartoon. Somehow, I have a picture in my mind of obnoxious little cartoon characters that show up in the dead of night and play nasty tricks.

Anyway....both betamethasone and budesonide are steroids designed for some form of inhalation....NOT as a pill. Not nearly as high a load of steroids as prednisone pills. The brand name for budesonide is Pulmicort. I take it twice a day via electric nebulizer for my lungs. Awhile back Mike G talked about putting it (or something similar) into his saline solution in his nasal nebulizer. I do not have a nasal neb, so I mixed it into my regular NeilMed sinus rinse bottle instead. It helped quite a bit. The big problem for me is that it is very expensive. $105 a month even with my insurance. My ENT looked around for a more affordable option for my nasal rinse. He found an online pharmacy in Louisiana that sells the betamethasone for around $30. Big savings, and it actually works better than the budesonide as a nasal rinse. I still take the budesonide in the nebulizer for my lungs. TRYING HARD to get off the oral prednisone. I've had to do a pred taper five or six times since November.

Hope you are doing better. I have been out of the loop with this last downturn, but I know you were in the hospital a short time ago. Are you out now? Hope so!!

pberggren1
05-21-2014, 11:20 PM
Thanks Jacquie. I was only in the hospital for a lung infection back in December.

me2
05-22-2014, 12:59 AM
I have found the budesonide helpful as well - in my Neil med rinse. Like my ENT said , if we can help the sinus directly then we can use less of the oral steroids. Its a good theory that seems to be working for me. My budesonide costs I think $35 / month with insurance. I think the pharmacy is ESL. I order it by phone and get it in the mail.

BookNut
05-22-2014, 01:28 AM
I have found the budesonide helpful as well - in my Neil med rinse. Like my ENT said , if we can help the sinus directly then we can use less of the oral steroids. Its a good theory that seems to be working for me. My budesonide costs I think $35 / month with insurance. I think the pharmacy is ESL. I order it by phone and get it in the mail.

Thank you so much!! Although I am finding the betamethasone much more effective in the sinus rinse, I do want to continue the budesonide in my nebulizer. I will look into ESL. If you have the phone number that would be great! I will then contact my insurance company and see what they will cover. My problem seems to be that for some random reason, the insurance company classifies it as a medical expense, not a prescription. Medical expenses are covered only by medicare, not by my prescription rider. So, I get to spend 20% of the total cost which works out to $105. If it were covered under my prescription coverage, I would only have to pay $20. My husband takes it also, but not as regularly as I do. We might launch a challenge to this practice. Probably will do us no good....As I said to the insurance rep I talked to on the phone..."I guess the family that wheezes together, gets squeezed together.". Oh well.

me2
05-22-2014, 01:38 AM
I'm so glad you asked- because I had the name wrong. I dug my latest box out of the garbage and here is the info : ASL Pharmacy 866 552-7579

I see that I have ten refills left. All I have to do is call them and they mail it. But wait , there's more... on the last order they asked if I wanted the saline rinse packets with it. Well.... I himed and hawed

She said "They don't cost any extra- they are free"

Well how can I say no to free? I BUY the Neil Med saline packets

BookNut
05-22-2014, 03:11 AM
I'm so glad you asked- because I had the name wrong. I dug my latest box out of the garbage and here is the info : ASL Pharmacy 866 552-7579 (tel:866 552-7579)

I see that I have ten refills left. All I have to do is call them and they mail it. But wait , there's more... on the last order they asked if I wanted the saline rinse packets with it. Well.... I himed and hawed

She said "They don't cost any extra- they are free"

Well how can I say no to free? I BUY the Neil Med saline packets

Thanks so much. I will start looking into it.

LisaT
05-25-2014, 01:10 AM
Thank you so much!! Although I am finding the betamethasone much more effective in the sinus rinse, I do want to continue the budesonide in my nebulizer. I will look into ESL. If you have the phone number that would be great! I will then contact my insurance company and see what they will cover. My problem seems to be that for some random reason, the insurance company classifies it as a medical expense, not a prescription. Medical expenses are covered only by medicare, not by my prescription rider. So, I get to spend 20% of the total cost which works out to $105. If it were covered under my prescription coverage, I would only have to pay $20. My husband takes it also, but not as regularly as I do. We might launch a challenge to this practice. Probably will do us no good....As I said to the insurance rep I talked to on the phone..."I guess the family that wheezes together, gets squeezed together.". Oh well.

That's strange that it's not considered a prescription. I'm pretty sure that when I had pulmicort it was covered as a prescription. I might try this for my schnozz too. Thanks for the tip!

1mzorro
06-11-2014, 12:42 AM
I had quite a bit of problems with major crusting and bleeding. My ENT put me on Betamethasone and Mupriocin ointment (22grams) all diluted in the neilmed twice daily for the last 9 months. It has been great. Hardly any crusting and nose bleeds are gone.

BookNut
06-11-2014, 02:36 AM
I had quite a bit of problems with major crusting and bleeding. My ENT put me on Betamethasone and Mupriocin ointment (22grams) all diluted in the neilmed twice daily for the last 9 months. It has been great. Hardly any crusting and nose bleeds are gone.

Thank you for your reply. Unfortunately, I have a developed a bit of a problem with inhaled steroids or the steroid in a rinse. I still plan to use them - but will try modification. I feel great when I first start doing the rinse and/or the inhalation. Then all of a sudden everything seems to block up in my sinuses and in my lungs. I then am so stuffed I can't get anything out of my nose, and my lungs or windpipe constricts tighter than tight and I can no longer cough. This results in terrible shortness of breath. Next time I start getting the stronger than usual coughing and the more copious muscous flow (which will be a few days after stopping pred) i plan to use the rinse and the inhalation about every three days and see if I can gain control that way. I am also starting on a long term prophylactic use of macrolide antibiotics. The one I am starting with is Calrithromycin. I am very allergic to artificial dyes such as yellow #5 and red #40, and it is a bear getting ahold of a dye-free version. Working on it. My pharmacy gave me three this morning and had ordered a 90 day supply from their other stores...but they cannot get any more because the company no longer makes it, so we have to find yet another manufacturer. Grrrr. Anyway - the betamethasone was absolutely amazing at reducing the mucous flow and crusting. So I have not given up on it by any means!! Phil - have you every used it??

Thanks again!

pberggren1
06-11-2014, 02:41 AM
I was on Clarithomycin for over a year. It was part of the M. Abscessus treatment. I took 500mg 2xd for 13 months.

pberggren1
06-11-2014, 02:42 AM
I have never used the betamethasone.

annekat
06-18-2014, 11:00 AM
Jacquie that sounds kind of like an allergic reaction to the inhaled or rinsed steroids. Could it be? Have you talked to your doc about it?

BookNut
06-18-2014, 11:46 AM
Jacquie that sounds kind of like an allergic reaction to the inhaled or rinsed steroids. Could it be? Have you talked to your doc about it?

I suppose it is possible. But I used the rinse twice a day for 2 or 3 wks without a problem. Then I started on the budesonide inhaled into my lungs. That is the one that seems to be the icing on the cake, so to speak. I can't take it while on prednisone, and my allergist thought that using it regularly after finishing up pred, might keep me off the pred. But it does seem to always dry me up too much. It generally takes about two weeks to get the effect, which seems to be awfully slow for it to be a reaction. I go to my allergist on July 1, so maybe she will have some thoughts. I HAVE started back on the betamethasone nasal rinse....but only every three days. If I start "drying up" I will quit. And i have reduced it from twice a day to once.

Thanks for the suggestion. I will definitely put it on my list of questions!

windchime
06-18-2014, 12:38 PM
Jacquie it definitely sounds like an allergic reaction of some kind. I second Anne on this one.

I took an inhaled steroid for several years then I woke up in the middle of the night with my tongue swelling one night. That was scary, but I headed down to the emergency room for a shot of Benadryl and Prednisone. It happened for a total of 5 times spread out over a year before I finally figured out what was causing it. This is because it didn't happen every time I used it which was twice a day. After the first three times I got an Epi pen and stocked up on Benadryl and just treated myself for the last two times.

The moral of that story is that sometimes the formulations of meds change, sometimes your body just rebels. Whatever the cause you can have an allergic reaction to something you've been taking for a while.

annekat
06-18-2014, 01:29 PM
Well, I sure as heck don't understand much about allergic reactions, but just thought it sounded that way. So I'm glad someone else besides me sees something in that. Not that I'm jumping to any conclusions, just nice to know I'm not out of line suggesting something I know so little about.

BookNut
06-18-2014, 02:05 PM
Interesting... I always thought an allergic response that involved breathing would happen every time. It has never happened when I am on prednisone. The airway tightening has always been the reason I take the prednisone. And i have had the tightening happen when I was NOT using an inhaled steroid. But I think most of the time I have been using one. On the other hand. I take symbicort twice a day. It has budesonide in it. It is the med that helps me the most, next to prednisone. I have allergies to some antibiotics and artificial color....but those allergies are intense skin rashes...no breathing problems. Definitely will check it out. So glad that folks look out for each other here!!

annekat
06-18-2014, 04:05 PM
It sounds too complicated for me to draw any conclusions.... I have read some strange stuff on some of the info sheets that come with meds, about allergic reactions and such, and sometimes they included things like throat tightening, I think. At one point on high dose pred I was having some intense dry coughing several hours after taking it, and this was listed as a possible reaction on the info sheet. But then when I asked a doc about it, I drew a blank... typical. At least there was one doc who wasn't my doc but in the same office, who was on call late at night and I got him on the phone and he said that pred could do that. But he didn't tell me to stop taking it. So these episodes continued and were over with in 10 minutes or so. I didn't die. Since then, and since my WG dx, high dose pred has rarely affected me this way, so I don't know what to think. Your reaction, or whatever it was, sounds a little scarier, though, Jacquie, so, yes, I'd get it checked out. Although I guess you are already so used to severe breathing issues that it might seem less out of the ordinary. Anyway, I'm glad you aren't feeling pushed out of shape by our concern... yes, we take care of those we love on here! I know I sometimes resist being told what to do, and you are being gracious about it.

windchime
06-18-2014, 11:40 PM
Interesting... I always thought an allergic response that involved breathing would happen every time. It has never happened when I am on prednisone. The airway tightening has always been the reason I take the prednisone. And i have had the tightening happen when I was NOT using an inhaled steroid. But I think most of the time I have been using one. On the other hand. I take symbicort twice a day. It has budesonide in it. It is the med that helps me the most, next to prednisone. I have allergies to some antibiotics and artificial color....but those allergies are intense skin rashes...no breathing problems. Definitely will check it out. So glad that folks look out for each other here!!

That's why it took me so long to figure out what was causing it. The first time it happened was at 4 in the morning so it was a good 6-8 hours after the use of the inhaler. It wasn't consistent, but once I stopped the inhaler it stopped. It makes sense that if it is an allergic reaction it would NOT happen while on pred cause pred is what they give you to stop the allergic reaction.

I was on Asmanex it has formoterol fumarate in it. So does the symbicort that you use. On the other hand if it's the budesonide that helps you maybe switching to a med that doesn't have the formoterol fumarate just to see if it makes a difference. I don't know, just sharing my experience with the formoterol fumarate and I'm sure you've tried others. Ah the mysteries of medicine. :confused1:

BookNut
06-19-2014, 11:19 AM
Wow Cindy....a swelling tongue sounds VERY scary. That has not happened to me. On my "good" days, I have COPIOUS mucous. I blow my nose at least once every five minutes, and I have a very wet cough and a expiratory wheeze. This has been the case on "good" days for the past three years. However, for the past year, this "normal" condition has grown periodically worse. the loose gunk hardens up, I get SOB and am basically useless till I get through a 40 mg taper of pred. Off the pred for two weeks and it all starts again. So, the usual meds all need to be reevaluated. I feel like my pulmy looks at me as if I were a pair of lungs. And my lungs are in better shape than most he sees, as he is a critical care pulmonologist. My ENT sees sinuses that are not nearly as blocked as others he sees. So, right now I feel that I only have two doctors that see me as a whole case...albeit a weird one. Maybe my allergist and PC can get to the bottom of things.

I've had a very good few days comparatively speaking. Today we took our granddaughter to Corning Glass Museum. We had SUCH a good time. But it involved a very moderate amount of walking, and I realized how very much the last year's roller coaster has taken its toll. I found it terribly difficult to keep up....getting very quickly out of breath. Huffing and puffing with just a short walk across the museum. Three years ago, I was walking 3-5 miles about 4 times a year (her hee. I meant to say 4 times a week!!). Now that Jess has gone home again, it is time for me to get control of all this. I have an appt with my allergist on July1. Also i am keeping my fingers crossed that the long term antibiotic will help. Meanwhile...back to daily Yoga!!!

I will definitely check out the allergy possibility. Thank you both...Anne and Cindy for spotting the possibility!!

annekat
06-19-2014, 12:52 PM
Jacquie, what you have to go through with your breathing and sinus discharge sounds perfectly awful. If only all four of your docs could work together and figure it all out! I wish the best for you so you can get this stuff behind you and live your life unburdened by it.

windchime
06-19-2014, 01:42 PM
Jacquie I'm glad you enjoyed your visit even if you got more exercise than you bargained for.

I can partially understand your misery with the mucous. Prior to getting on the pred I had a lot of sinus drainage. Nothing dried it up. Since I've been on the pred it's pretty much dried up, however I've noticed that now that I'm down to 10 mg it's slowly creeping back in. I don't have the gunk hardening so i feel for you there. I can relate to the SOB though. That's why I'm on O2 which doesn't relieve the SOB just gives me O2.

Anyway hopefully you can get it sorted out and get some new answers some time soon. Enjoy your yoga.