Hypertonic solution ...

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Grendel

New member
Have many of you all out there tried HYPERtonic solution? How does it work for you? What brand/company name is the product? What percent salt is what you are inhailing? I've heard different things from 3% to 7% hypertonic?

Lastly, my doctor said hypertonic solution is not prescribed while on pulmozyme, that it is an either or situation. Is this your expereince as well?

Thanks.
male/33/CF
 
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IG

Guest
I tried it. At the time I tried it I was on the 3% [they said anything above 3% for me was too much for my lungs to handle] I don't remember the brand or company. It worked great at the time I was on the TX list and going down hill anyway one of those things that was unavoidable despite anything we did. I was doing the saline right during the time I got a g-tube and my FEV 1 just shot up. went from 20% to 40% [it was probably a combination of actually gaining weight and getting crap out of my lungs for once.] It really helped me to move the stuff out. I was on it during pulmozyme, and while I was on the hypertonic saline it was just this crazy thing from the west that my doctor had heard of. I don't think it was anything in trial period at the time. I definitely suggest hypertonic saline since it seemed to help me a lot.
 
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miesl

New member
I don't have my study links at work, but I believe there is a study about alternating pulmozyme/hypertonic saline on an every other day basis. If you want, I might be able to find that link again. There are studies that vary the percent from 3-10%.

Jeremy uses 5% hypertonic saline 5 ml/twice daily. He does his albuterol/atrovent/mucomyst neb first - since saline can cause constriction of the lungs. Our pharmacy had a heck of a time getting saline that his insurance would cover, so since the pharmacy is part of Fairview hospital, they just mix us up an IV bag of solution every month. We draw it out with luer-lock syringes.

It seems to work really well. Jeremy had eh-to-negative results with pulmozyme, so this seemed like a good (and cheaper) alternative. He coughs more, and he says stuff seems "easier" to cough up.
 
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blindhearted

New member
Need Advice

I asked my CF doctor about Hypertonic Saline. He would not put me on it. He doesn't believe in it. Said there was no evidence that it even worked. Plus it caused a lot of Bron. Spaz. and was hard to get. That's all he said, no further discussion. Not even a "if you really want to, we can try it. Wouldn't hurt anything." I could go to my local pulmonologist (more lay back, not CF Spec.) and ask for it, but it will probably make my doctor at the CF Clinic very mad.

From what I have read up here from everyone, it seems to be a good thing (enough evidence for me to try). Since my FEV-1 is at 34% I am will to try it to get my PFTs up. What should I do about this?
 
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miesl

New member
It's upsetting that your doctor told you there is no evidence. You should look up the studies and print out copies for him.

What I would do would be to find another doctor. Excuses like "it's hard to get" are bull, since that's NOT a reason not to use something. Our CF doc warned us that it would be hard to get, then he worked with the pharmacy for two days to make sure we were able to get some that wouldn't cost us an arm and a leg.

Bronchiospasm. The solution to this is also in the studies - bronchiodilators prior to treament.

This is YOUR treatment. It is YOUR life. Make sure you get things done your way. This doctor seems to not value your opinion as a patient, this is bad.
 
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SeasonsOfLove

Guest
Danyell,

Maybe if you printed out some positive articles about studies involving hypertonic saline and showed them to your doc that might help?

Does anyone here do BOTH pulmozyme and hypertonic saline daily?

Thanks and have a nice weekend everyone,
 
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anonymous

New member
Grendel here.

Well, I will be getting hypertonic solution next week. It will cost me $50 for 50 viles. My insurance doesn't seem to cover it. My CF physisician (assistant) said that they don't perscirbe it along with pulmozyme, but I snaked my way around that and it will be here next week. I will post any benefits if anyone is interested. I will be doing pulmozyme in conjunction with the hypertonic solution. Just not at the same time.

Thanks for the info.

As for Danyell, kick that doctor to the curb. If a doctor was mad at me for going to see someone else I would serve it up to him for lunch. My disease is not about his ego. Its about my survival. Also, as in my case, when one doctor says "no", it is easy enough to find another to say "yes". You have to be your own advocate. At the end of the day you are living with your disease, not the doctor, ultimately they don't care. I have traveled all over the country meeting CF doctors and I haven't found one that i think has a sence of the patient goes through or has demonstrated to the slightest degree that they care.

Good luck.
 
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anonymous

New member
Grendel here.

Well, I will be getting hypertonic solution next week. It will cost me $50 for 50 vials. My insurance doesn't seem to cover it. My CF physician (assistant) said that they don't prescribe it along with Pulmozyme, but I snaked my way around that and it will be here next week. I will post any benefits if anyone is interested. I will be doing Pulmozyme in conjunction with the hypertonic solution. Just not at the same time.

Thanks for the info.

As for Danyell, kick that doctor to the curb. If a doctor were mad at me for going to see someone else I would serve it up to him for lunch. My disease is not about his ego. Its about my survival. Also, as in my case, when one doctor says "no", it is easy enough to find another to say "yes". You have to be your own advocate. At the end of the day you are living with your disease, not the doctor, ultimately they don't care. I have traveled all over the country meeting CF doctors and I haven't found one that I think has a sense of the patient goes through or has demonstrated to the slightest degree that they care.

Good luck.
 
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anonymous

New member
I've been on hypertonic saline for 5 mos now. It costs me around $40 a box, and I get it from the CF pharmacy. I alternate my hypertonic saline with Tobi (which I am on every other month.) It is not true that you can't be on hypertonic saline and pulmozyme! When they originally did the clinical trials of hypertonic saline, they were alternating it with pulmozyme for cost purposes. But, there isn't any reason why you can't be on both. I'm not really sure if my case is unusual, but since I have been on hypertonic saline, my lung function has been better than it has been in prob 5 yrs! Before I went on hypertonic saline, my lung function was in the low 70's when well. My first dr's visit after I was on hypertonic saline, my lung function was 83%! Better yet, when I went most recently it was up to 87%! Usually, I need IV antibiotics every 3-5 months. However, now I haven't needed IV's for over 8 mos! Like I said, I don't know if anyone else has reacted this well to hypertonic saline, but it has been like a miracle for me. I have never reacted this drastically to a medicine before, not even pulmozyme. So to make a short story long, I think it worth talking to your doctor about.
 
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