Just started Hypertonic Saline...Have Q's

[anonymous]

Well, I did my FIRST HS 7% treatment this morning and that stuff is nasty. I can totally feel it going down my throat and yes I cough alot. Right after the treatment my chest felt full but as the day went on my chest felt better. Those who are on it, do you :

1. Feel the salt burning your throat as you are doing it? Does it get better? Does your throat get use to it?

2. Do you feel icky after, chest feels full but later goes away?

3. I can not take a deep breathe yet while doing it, will that improve?

4. Anyone else on TOBI and HS? Do you alternate months?

Thanks!!!! I look foward to seeing how this works out after I have been on it for a month. I am on it during my OFF TOBI months because I feel "icky" when I am not on TOBI.


Thanks!!!


Jennifer 34 Years old with CF and CFRD

 

[anonymous]

I just started the hypertonic saline today as well and I have questions as well. I am not on tobi, but I am on colistin. What order do you do your nebs in? Can I do my vest while I am doing any of them?

 

[anonymous]

I do the saline after colistin, the colistin is also mixed with saline, so I don´t have to clean the nebulizer meanwhile.

Uli,43,Germany

 

[littledebbie]

I do albuterol first, then HS then i do clearance and then tobi (or coliston depending on the month) I do albuterol frist to open me up so everything gets in <img src="i/expressions/face-icon-small-smile.gif" border="0"> then HS to cough crap out. Then since it's all nice and loose i do clearance. then the antibiodic which you DO NOT want to cough out <img src="i/expressions/face-icon-small-smile.gif" border="0">.

HS does burn a little, I drink a little water every few minutes, it seems to help me. And it makes me cough so much up that it seems really worth it to me. it makes me feel very FULL of junk but to me I think that's good because It was all in there already but now it's loose and I can get it out. I think of it as lung draino. Sort of burns but sure clears out the gunk.

The deep breath thing...is it because it makes you cough?, that happens to me and I go with it, i turn off the machine for a second and cough/spit, then sip water and start again. It's actually very tiring to me but it's so productive I can't argue with it.

 

[perl]

it does burn. it does get a little better.
i do not feel icky after, just tired sometimes from coughing so much.
it's hard for me to take a full breath of it, but doesn't seem to be a problem since the coughing is helping it to get deeper into the lungs.

if i am on tobi, i don't stop the HS.

also, i think it's best to do HS b4 Tobi. that way the Tobi can reach further, after coughing all that gunk up from the HS.

i do: bronchodialators (while using vest), pulmozyme (10 more minutes of vest), HS, Tobi (or Colistin...)

 

[anonymous]

Thanks. I flutter first and get as much out as possible. Then I do Albuterol thru the neb while doing the vest. Then I stop vest and do HS. I can not do the vest while doing HS cause I cough too much. THen I cough more after HS. Then strap on the vest again for Pulmozyme. Doctor has me doing HS only on off TOBI months, but if I did do TOBI I would vest while doing it and that would be my last neb treatment. Its a wonder i get out of the house in the AM at all and to bed at night!!!! Yikes! Actually cause it takes me sooo long in the AM to do all that plus I sleep til 9:00 sometimes 10. My am is noon!! HA HA


Jennifer 34 years old with CF and CFRD

 

[anonymous]

I have been using the saline for about a year now and I love it. Using it twice a day has become as important as using my vest to me. I use 7% solution when i vest in the morning and night every day. When I am on tobi i use the saline for the first twenty min of my vest and then take a ten min break of just vesting (if i have time) and then use my tobi so that my lungs are clear when i use the tobi.

to answer your questions from what happens to me with it:
1. I got used to the salty taste and hardly notice it now.
2. After using it if i cough up enough stuff my throught will feel a little slimy for a while but it isnt that uncomfortable.
3.Hopefully once you adjust to the taste and saltyness you should be able to take deeper breaths just be prepared to cough.
4. I alternate tobi months and use the saline all the time in place of pulmozine ( thats what i used to have) the saline is just the best for me.

Good luck and give it a chance to work cause like i said it makes me feel way better after coughing everything out.

=)

 

[princessjdc]

1. Yes your throat does get use to it

2. I dont feel icky, but I do feel the mucous moving around in my chest and after maybe 10 mins its gone

3. Yes once you get use to HS then you will be able to take in deep breaths

4. Im on Tobi and I dont alternate them at all, I do the HS even when Im on the tobi month it, doesnt bother me at all

First thing I do when starting my treatments is my inhalers, Comibivent first followd by Advair, then I do my pumozyme, next is Hypertonic Saline after that comes the vest and last but not least Tobi, when Im on. i was told not to do any nebs while on the vest because you dont get all the medicine in you.

 

[eli]

Hi Jen,

Just a thought, if your finding that its irriating you too much try lowering your concentration level to 41/2%. We just had a talk at clinic and they sugested that people starting it for first time should try the lower concentration and then work your way up.
See how you go, good luck.

 

[Robin]

I just did HS tonight for the first time. I'm not coughing as much as it sounds like you guys are. I wonder why. My Tobi makes me cough a lot more. Although, I did cough some mucus and it was pretty loose. It seems okay so far. I do my Tobi every day once a day. My doc told me to do the Tobi and albueterol first to kind of coat my airways and throat a little. My throat did hurt a little after doing this treatment. I hope this gets better. I'm really glad to hear that it does help. I'm so tired of getting out of breath playing with my dogs for 5 minutes!!

 

[lynchmobshredder]

I also just started it today. i coughed my head off! man this stuff works! i had a ton of the stuff left in the rubber bottles? am i really just supposed to toss it out?

 

[ladybug]

Robin,

I've done HS several times, and have found it to be less of a wonder drug than I expected... I barely coughed, and felt like crap all day (and the next day!) I felt tight and SOB and even had some wheezing. I even tried to cough during HS and couldn't. I feel like I'm the oddball that is destined to have nothing work.

As far as the saltiness... drinking water really helps.

 

[john81john]

Hi,

right now I nebulise my morning HS...I nebulise it for 4 month and I find it very helpful for me. Before HS I was doing in the morning 15 ml saline solution (0.9%) and 10ml Amiloride (something like Albuterol, but european version...). The same I have done at the evening... plus Pulmozyme in the afternoon...I expectore about 150 ml mucus daily for more then 3 years, but now with HS it is much easier and my last FEV1 levels (16th Mai 2006 - 90%) were 5% higher than before (11th January 2006 - 85%).
Now I nebulise 10ml 0.9% saline solution, then bronchodilator and 15ml HS...during and after this therapy I can expectorate much better and easier then before I have done HS. I drink every 5-10 minutes a swallow of water, because of the salt taste in my mouth and throat. I feel my throat got use to it after 3-4 sessions. I can breath deeper after it because of bronchodilator and clearer lungs (after better expectoration). After this therapy I can do mountain biking or play tennis without breathe problems, when I need to expectorate during the day it is easier too, then before I have nebulised HS (HS keep better "environment" in lungs for longer time then Amiloride or Albuterol).

There is no problem to nebulise it with TOBI

 

[Brad]

I just did my first dose of HS 7 % it burned just a bit at first

then I got used to it, I coughed more than normal
but I then got up more than normal also,,

After about I an hour getting a little more up , it is thinner than normal.
So first dose went well...
No pains in chest, burning is all gone..
Seems to do as it is intended .....

Only draw back I can see ,it tastes like every Ocean
I have ever swam in, From Delaware Beach to South Beach Florida
and all point in between,,,,, not to tasty,, But It Works !!!<img src="">

 

[Momtana]

I am pretty new to CF - diagnosis 3 yr ago (after being treated for asthma & allergy for nealry 50 years! darn, those shots never helped) - my favorite treatments are the saline sinus rinse and HS in the nebulizer. I am on a trial for the vest and like that least of all. I find the coughing with the HS quite rewarding. The CF center at National Jewish in Denver is OUT of the saline for the neblizer. They tell me there is a nationwide shortage following the article about the Australian surfers with CF.

 

[lovingBenandCambree]

I tried the 7% once and it made me feel tight and not able to take a deep breath. I went and did PFTs immediately after and they had gone down 10% from an hour earlier. From 44-32. It was crazy. They said that I had bronchospasm from it and didn't want me to do it anymore. Because of this I am now currently on 3% HS. I love it and think that it really helps. You could be feeling this way because of bronchospasm. The feeling of not being able to breath got better within about 2-3 hours. I would ask your doc about it and then possibly go to a lesser percentage. Good luck! I really do think the HS helps though.

 

[anonymous]

Does everyone buy actual saline solution or do you just mix it yourself? Is it safe to just mix it yourself in distilled water?

 

[anonymous]

I have my Hypertonic 7% saline compounded by Foundcare pharmacy. Each sterile premixed and premeasured dose comes is a small vial with a twist off top.
web site: www.Foundcare.com

The cost for a one months supply of 2 doses a day of is $36 and that includes free shipping. Their number is 877-291-1122.

 

[thefrogprincess]

My HS (which I also just started) comes in 15 mL vials. The doc said use 5 in the morning, 5 at night and toss the rest so it doesn't get contaminated.

 

[gsplover]

To Anonymous:

I have been using foundation care as well. Thanks for the update on the price they knocked the price down by .90 a dose. I just called and refilled my prescription. Thanks for the information.