Hypertonic Saline

[serendipity730]

Hi all -
My doctor put me on a nebulized hypertonic saline (3% saline) a month ago. Yesterday, I went back to the doctors. My FEV1 was up 13 percentage points!! I was amazed. Other than that, I haven't done anything different in the last month, in fact I have even been more lax with my exercising Now, I am not saying this will work so well for everyone, but I would reccommend giving it a try.

 

[abloedel]

Were you on Pulmozyme before trying this? I was just wondering if you can speak to the difference between the two as far as how they affected (or is it effected) you. I talked to my doctor about both and they said they prefer Pulmozyme...any preferences from your point of view?

Amy
36 w/CF

 

[anonymous]

My question is, would they let anyone use HS or do you have to have a certain FEV level to use it?
In other words, say if your FEV1 was 25% would they let you use it? I know some trials they won't let you try if you have a lower FEV#.

 

[serendipity730]

To answer Amy's question, yes I am on pulmozyme. I have been on Pulmozyme for 10 years, so it is hard for me to remember how much it affected. When I started Pulmozyme my FEV1 was still in the 90's, so there wasn't as much room for improvement. I am not a jump on the banwagon sort of person, I didn't get all excited about curcamin or some of the other things that have come out lately. But I think that a 13% pt. increase speaks for itself. I, personally, hate when dr's say they prefer a certain medication. You are the one who is going to take and the one who might benefit from it. If hypertonic saline sounds like something you would like to try, I would push for it, if I were you. As for the other question, I don't know. You would have to ask your dr.

 

[anonymous]

Hi Mary what was your FEV1 prior to using the HSaline???
D

 

[AimeeSue82]

I've been on HTS for years now. 3% while I'm at home and when I got in for a tune up they kick it up to 6, 9, or 10%. I've noticed that it helps me produce right away. I actually use it in my IPV machine. This has been the best combo to get me to cough anything up during treatments. And (to Amy) while your dr may PREFER Pulmozyme, you can do both. I'm on Pulmo also. I usually do the Pulmo in the a.m. when I'm in a hurry and the HTS at night in my IPV. The only think I don't like about HTS is that you use Albuterol first (to prevent bronchospasms). That gets my heart beating super fast and makes it hard to go to sleep. Other than that, I love it. And my baseline PFTs are in the 90s.

-Aimee/22

 

[abloedel]

My baseline FEV's are in the mid 50s, and jump to mid 60s after using a bronchodialator. That's interesting to know you can use both...I was under the impression it was either one or the other....I am new to all of this so I'm trying to get up to speed quickly! I realize it is my doctor who will have to go through, but I appreciate having the additional info to ask more intelligent questions and be able to make a more informed decision! Thanks everyone...

Amy
36 w/CF

 

[thefrogprincess]

I was also under the impression that it was one or the other. When I started pulmozyme my FEV1 was in the low 50's but jumped to mid 60's in 6 weeks. So if HTS could get me up even a few more points I'd be thrilled.

 

[anonymous]

Hi Everyone,

This may seem like a strange question..but can someone confirm that the medication I am using is Hypertonic saline? When I started using tobramycin (inhaled) the doctor recommended that I mix the tobramycin prior to use with a saline solution, but never used a specific name for the saline. The saline comes in pink long rectangular type vials. The tops have to be twisted to let the saline out. Is this Hypertonic saline?

Do most individuals inhale the saline separately from any other medication?

Dxat35

 

[anonymous]

It would have to indicate on the box that it is 3% saline....... I believe yours is normal saline 0.9% .

But check the box!

A

 

[serendipity730]

I use hypertonic saline and pulmozyme....orginally they were looking at hypertonic saline to alternate it with pulmozyme (mostly for financial purposes.) Hypertonic saline is cheap, only like $14 a month. Also, to answer someone's question...my pft's are usually in the low 70's, upper 60's. It has been 5 mos since my last IV meds, so usually around this time I would start getting sick. So, you can imagine my excitement in having my pft's up to 83%!!!

 

[anonymous]

Did you have to ask your dr for it or did they approach you? I wonder why if it works so well for some its not more widely used. Is there a downside maybe for some? I'm curious because My fevs are 40. I would very much like to get them up and have been trying. Thanks for the info. Becky

 

[anonymous]

Do you use the Hypertonic saline every day? I used it in the hospital once and woke up during the night coughing, and coughing and coughing - of course at that time I had a chest tube in and even though coughing was good, it hurt like crazy.

Do you use it before your pulmozyme? I think that is what I remember. I have been thinking about asking if I can use it again. I do know that they didn't want me to become dependant on it, and using it too often, I heard, can change the pH in the lungs.

I have to say I loved that it loosened things up. Great news on your PFTs. I would sure love mine to skyrocket like that.

Sarah 27 w/cf

 

[anonymous]

My FEV1's are mid 20's to mid 30's and hypertonic saline works very well for me. The transplant doctor "gave me" 1-2 years to live 2 years ago when my FEVs dipped to the low 20s. I think HS has been key in maintaining my FEVs - currently mid 30's.

I think every patient should talk with their doctor about trying it. I had never heard of becoming dependant on it or it significantly altering the pH in the lungs, but I'm no chemist. My guess as to why this treatment is slow to the market (or more widely used) is there is no big drug company pushing the research or offering samples to cf clinics. The stuff is hard to get. What's in it for them? It costs pennies compared to pulmozyme or TOBI. After years of being on them, neither have been effective for me but HS has.

Jason 30 w/cf

viva la saline!

 

[serendipity730]

I take hypersaline 2x a day everyday. I am considering doing it only once a day when I am on Tobi. I have never heard of the changing pH thing...I will have to ask my dr. about that. It doesn't make me cough like crazy, but it certainly makes me cough more. Oh, and my dr. mentioned it to me, not vice versa.

 

[anonymous]

Maybe I missed this previously, but what are some of the side effects of hypertonic saline?
I assume it is NOT an antibiotic, right, but more like albuterol or Xopenex?

 

[luke]

hypertonic saline is a different type of medicine than albuterol and xopenex as well. It is a high concentration saline that promotes coughing. Actually it can be so irriatating that you have to give albuterol or xopenex with it so you don't have a wheezing attack. Studies show that it decreases inflammation and helps in mucociliary function as well. It also has a property that helps stop bacteria growth that is just be a bonus side effect.

 

[anonymous]

You're right - it's not an antibiotic or a bronchiodialator. It's sterile highly concentrated salt water. As previously mentioned the only side affect I'm aware of is bronchiospasms (fancy description of tight airways). I prefer to do my bronchiodialator after it to open my airways back up after coughing stuff up.

Jason 30 wcf

 

[anonymous]

I thought that hypertonic saline works by introducing a solution with a higher NaCl concentration (than lung epithelial cells) into the lungs, therefore drawing water out of the cells and thinning the mucus making it easier to cough up. Is this correct?

Laura

 

[abloedel]

I had to go to clinic Thursday because I was coughing NONSTOP...very aggravating, especially when EVERYONE who passes says "Are you OKAY"? Do they really want to hear the "real" answer to that question? Anyway, getting off topic there...I have been on Pulmozyme for a month, and my FEV's were up 71% (from a baseline in the mid-50s), BUT they suspected the reason for my constant cough was some sort of allergic type reaction to the Pulmozyme. So, we have discontinued the Pulmozyme, and we will start the Hypertonic Saline in a couple of weeks after my lungs calm down (and I finish my latest antibitiotics).

So, it sounds like coughing (increased) is a pretty common side effect of the the HTS...Is it only immediately after using it or is it more constant, all day/night coughing? How long does it take to inhale the HTS (sounds like it takes more time than the Pulmozyme). Just curious. I'll keep you all posted once I start this and what it does for my FEV's - I hope I have as much success with this as you have!

Amy
36 w/CF