My thinking is that the salt rooms can get high in cost. I am just starting my journey with MAC, did not know about the saline nebulizer but sounds much better. I will ask my doctor about this. Thank you for the info.
@jammer You may want to mention that many of us on this site are using the inhaled saline. You would want to ask for a prescription for sodium chloride 7% and you will need a scrip for the nebulizer also. If you scroll up, you will see a 'search' box. Type in 'sodium chloride' in that box and push enter. Past conversations about sodium chloride should pop up. This site has all kinds of buried information. You just have to dig, hunt and peck around for it. We jave a Discussion board also. It is located on the Mac home-page.
@jammer You may want to mention that many of us on this site are using the inhaled saline. You would want to ask for a prescription for sodium chloride 7% and you will need a scrip for the nebulizer also. If you scroll up, you will see a 'search' box. Type in 'sodium chloride' in that box and push enter. Past conversations about sodium chloride should pop up. This site has all kinds of buried information. You just have to dig, hunt and peck around for it. We jave a Discussion board also. It is located on the Mac home-page.
@windwalker About the sodium chloride percentage, at my request, my Dr. prescribed 3%, but when I went to fill it, the pharmacist at CVS here in NY said the highest they make for people at home is .9%. That is what I’m currently using. Where do you get higher apercentage than that? Is it from a special pharmacy?
@windwalker About the sodium chloride percentage, at my request, my Dr. prescribed 3%, but when I went to fill it, the pharmacist at CVS here in NY said the highest they make for people at home is .9%. That is what I’m currently using. Where do you get higher apercentage than that? Is it from a special pharmacy?
@ginak I got mine from CVS this last time. I used to get it at Walgreen's. You can go to http://www.goodrx.com and see who in your area has it. You can order it online too. Someone recently posted that they purchased it for $21.00.
@windwalker About the sodium chloride percentage, at my request, my Dr. prescribed 3%, but when I went to fill it, the pharmacist at CVS here in NY said the highest they make for people at home is .9%. That is what I’m currently using. Where do you get higher apercentage than that? Is it from a special pharmacy?
@jaejack I found this to a very interesting discussion. We are retired military and Walter Reed Bethesda Medical Center will never run out of patients. On the others hand, we find the doctors, even though the active duty, to be very caring. They care, because they are interested in the wellness of the person they are treating. It is the same though as anywhere else, you must be willing to establish that patient/doctor relationship. My wife was given the choices concerning the "Triple Treat" good and bad sides. She tried it for six month or so and it was too much for her suppressed immune system. It did help her for a period of time, but the "bite became worse than the bark", meaning it did more harm than good. She is back at the point of need some sort of treatment, but "Triple Treatment" has been ruled out as far as she is concerned; It her choice...
As stated previously, I am a researcher, not by trade, but out of necessitate. I joined this thread to see what other persons are going through and the type of help they think they are getting for their problem. One thing I notice right away, there are more women, according to this thread, than men suffering from this disease or bacteria. I am wondering what that is an indication of. We are scheduled for a CATSCAN later this month to determine negative progression or not.
One other conclusion we have come to, we started to died the day we were born. There will be many trials , suffering, and tribulations we have no control over, but trust we will be taken through them. The life we live is not all about us and the Date of birth (DOB) or the Date of Death (DOD), but DASH in betweew them. We have recognized there is only so much doctors are going to be able to do for us and it is incumbent upon to do as much for ourselves and others while we live. That's why we will trust the doctors to do their part, but trust more in that the creation of life to give us and do the best we can with it. I am researching all of the medicstion individuals on this thread are taking organizing what people are saying that works best for them. As we all know, what will work for some, doesn't work for others, but we will have a strting point of where we should be.
@jaejack Wow! You are spot on in your observations. I often wonder too why it is predominantly women that get this disease combo. The only thing I can think of is that it may have to do with hormones. I have pondered if testosterone serves as a protection against it. Do I need a sex re-assignment? Just kidding. Got to try to have humor in an un-funny situation. You Know?
@heathert......in addition to Arikayce were you on antibiotics for a year or more? And to everyone else out there......is anyone else concerned about the long term damage we are doing to our bodies by taking the big 3 for 18 months? In addition to damaging eyes and ears these dugs especially long term affect our memory, our emotions and our psychological well-being not to mention other more frightening side effects. Our culture has long been heavy handed in dispensing antibiotics and studies have shown that people live longer healthier lives in areas where antibiotics are not prescribed. I know Azithromycin, Ethanbutol and Rifampin is the recipe favored by Mayo and NJH but many progressive doctors are beginning to question the use of these drugs. I want to believe that what I’m taking is absolutely necessary in getting rid of MAC and not something that is consistently prescribed to keep the medical and pharmaceutical companies afloat. It’s been said that doctors and pharmacies love chronic illness as we continue to pay for years .....I’d hope that they love us instead for their desire to cure us. Let’s hope the Hippocratic oath is their top priority.
@hydrang3a My Mayo dr does not favor the traditional Big 3. He thinks they are over-prescribed. You can click on my picture and read my bio and see how I was treated. I am concerned that drs are not keeping current and giving patients other options to choose from. I think every one of us should ask our treating physician what their success rate is in using the Big 3. I bet they would say "What do you consider success?" or another answer might even be. "I don't know".
@ginak I got mine from CVS this last time. I used to get it at Walgreen's. You can go to http://www.goodrx.com and see who in your area has it. You can order it online too. Someone recently posted that they purchased it for $21.00.
@ginak@windwalker after gathering info from other members in our group I asked my pulmonologist to write a prescription for the 7% Hypertonic Saline. The cost at my local Walgreens (in south Georgia) was around $70 for a months supply. It's been a few months but I think it was that price because Medicare didn't cover it or my Part D prescription plan didn't cover it. Either way, Insurance plans are different in every region so do your own research for sure. My point is, due to limited income I was able to get my prescription filled thru Alliance Rx Pharmacies for $21 to $27 a month, depending on which supplier ships. They are very nice talking to you on the phone and will do their best to fill your prescription at a reduced price and/or thru your insurance. Hope this is helpful. Margie
@ginak I got mine from CVS this last time. I used to get it at Walgreen's. You can go to http://www.goodrx.com and see who in your area has it. You can order it online too. Someone recently posted that they purchased it for $21.00.
@ginak@windwalker after gathering info from other members in our group I asked my pulmonologist to write a prescription for the 7% Hypertonic Saline. The cost at my local Walgreens (in south Georgia) was around $70 for a months supply. It's been a few months but I think it was that price because Medicare didn't cover it or my Part D prescription plan didn't cover it. Either way, Insurance plans are different in every region so do your own research for sure. My point is, due to limited income I was able to get my prescription filled thru Alliance Rx Pharmacies for $21 to $27 a month, depending on which supplier ships. They are very nice talking to you on the phone and will do their best to fill your prescription at a reduced price and/or thru your insurance. Hope this is helpful. Margie
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I heard that too and am going to one in Sugarland soon so I will let you know!
@jammer You may want to mention that many of us on this site are using the inhaled saline. You would want to ask for a prescription for sodium chloride 7% and you will need a scrip for the nebulizer also. If you scroll up, you will see a 'search' box. Type in 'sodium chloride' in that box and push enter. Past conversations about sodium chloride should pop up. This site has all kinds of buried information. You just have to dig, hunt and peck around for it. We jave a Discussion board also. It is located on the Mac home-page.
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3 Reactions@windwalker About the sodium chloride percentage, at my request, my Dr. prescribed 3%, but when I went to fill it, the pharmacist at CVS here in NY said the highest they make for people at home is .9%. That is what I’m currently using. Where do you get higher apercentage than that? Is it from a special pharmacy?
@ginak I got mine from CVS this last time. I used to get it at Walgreen's. You can go to http://www.goodrx.com and see who in your area has it. You can order it online too. Someone recently posted that they purchased it for $21.00.
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2 Reactions@ginak, Your CVS pharmacy should be able to order in for you.
@jaejack Wow! You are spot on in your observations. I often wonder too why it is predominantly women that get this disease combo. The only thing I can think of is that it may have to do with hormones. I have pondered if testosterone serves as a protection against it. Do I need a sex re-assignment? Just kidding. Got to try to have humor in an un-funny situation. You Know?
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1 Reaction@hydrang3a My Mayo dr does not favor the traditional Big 3. He thinks they are over-prescribed. You can click on my picture and read my bio and see how I was treated. I am concerned that drs are not keeping current and giving patients other options to choose from. I think every one of us should ask our treating physician what their success rate is in using the Big 3. I bet they would say "What do you consider success?" or another answer might even be. "I don't know".
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Hug
1 Reaction@ginak @windwalker after gathering info from other members in our group I asked my pulmonologist to write a prescription for the 7% Hypertonic Saline. The cost at my local Walgreens (in south Georgia) was around $70 for a months supply. It's been a few months but I think it was that price because Medicare didn't cover it or my Part D prescription plan didn't cover it. Either way, Insurance plans are different in every region so do your own research for sure. My point is, due to limited income I was able to get my prescription filled thru Alliance Rx Pharmacies for $21 to $27 a month, depending on which supplier ships. They are very nice talking to you on the phone and will do their best to fill your prescription at a reduced price and/or thru your insurance. Hope this is helpful. Margie
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2 Reactions@windwalker Oddly my CVS told me they couldn’t get it. But thanks, I’ll see about ordering it online
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1 Reaction@margiebanks
Thanks. I’ll try searching around and seeing what I come up with