My doctor suggested i post this question since she keeps asking me if i had tried Hypertonic saline and i keep telling her i am reluctant to, since i have hemoptysis problems. I remember someone saying a while back they thought the hypertonic saline was causing hemoptysis, and i dont need any help in that area. Does anyone with hemoptysis problems use hypertonic saline? If so, has it worsened? gotten better? Any info would greatly help.... Thanks
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Hypertonic Saline and hemoptysis
- Thread starter Diane
- Start date
My doctor believes that saline can aggrivate hemoptysis just like Pulmozyme can. She doesnt avoid it just because of the "what ifs". For me saline has also irritated the airways badly as well. It seemed to start having more negative impact then the original positive. Hopefully I will be able to return to it & get the original positive results. I am very sensitive to bleeds & even if the saline itself didnt irritate it the coughing that it made me do might have. Of course as we know each person is different. Some have been able to combat the problem by going with a lower % of saline. I wish it was cut/dry answer for you!
Melissa, i was hoping you had tried it and had an answer for me. It seems you and i have the same problems with hemoptysis. What a pain in the a**. I told my nurse if i do try it, we will start on the 3%, the lowest , just to be safe and see how that goes and go from there. I dont have a problem with pulmozyme and hemoptysis so thats good, but with hemoptysis problems i always hate to try something new.
I have had hemoptysis since I was 13. Sometimes even daily. Never major bleeds. I've never coughed up more than a few TBSP. I use hypertonic saline daily and I do not see an increase of hemoptysis. Do you keep a journal of your bleeding history? If not, start to and then when you start a new drug you'll see if there's a change. I've found a journal very helpful. I just use one of those very small one's (pocket size) from Hallmark. I mark an H, streaking or BH (big Hemoptyis) as well as other things I'm tracking.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
Melissa, i was hoping you had tried it and had an answer for me. It seems you and i have the same problems with hemoptysis. What a pain in the a**. I told my nurse if i do try it, we will start on the 3%, the lowest , just to be safe and see how that goes and go from there. I dont have a problem with pulmozyme and hemoptysis so thats good, but with hemoptysis problems i always hate to try something new.</end quote></div>
Just to add.....for the first 2 months I thought it was great. When things finally went haywire they really did. I might be able to return to it with no problem, but personally am scared to do so. I dont want to take steps backwards. Also the results I were impressed with were what I coughed up, but it didnt have an improvement on my pfts so its just how I felt that was an obvious benefit!
Melissa, i was hoping you had tried it and had an answer for me. It seems you and i have the same problems with hemoptysis. What a pain in the a**. I told my nurse if i do try it, we will start on the 3%, the lowest , just to be safe and see how that goes and go from there. I dont have a problem with pulmozyme and hemoptysis so thats good, but with hemoptysis problems i always hate to try something new.</end quote></div>
Just to add.....for the first 2 months I thought it was great. When things finally went haywire they really did. I might be able to return to it with no problem, but personally am scared to do so. I dont want to take steps backwards. Also the results I were impressed with were what I coughed up, but it didnt have an improvement on my pfts so its just how I felt that was an obvious benefit!
Lauren, I do mark on my calendar when i have hemoptysis and what amount., but the idea of a litttle journal is a good one, i may try that <img src="i/expressions/face-icon-small-smile.gif" border="0"> . I had massive hemoptysis 4 years ago and had an embolization , and then a month and a half later had a sub massive hemoptysis and had to have another embolization. I have hemoptysis still but smaller amounts , a teaspoon here a table spoon to a few table spoons there. I just dont want to aggravate it too much, because i hate it and it still scares the heck out of me.
me too scares me and I'm trying to get to the bottom of why and if I can help it to not visit. I like Mel have not seen a drastic improvement in my pft's. I say give it a try and see if you feel the benefits are worth the risk with your hemoptysis. At least that way you'll be able to see if there's any increase in bleeding.
Do you take Singulair? I just read on it's drug sheet that it increases bleeding. hmm.. I take this drug.
Do you take Singulair? I just read on it's drug sheet that it increases bleeding. hmm.. I take this drug.
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Diane</b></i>
No Lauren i dont take Singulair. I take Advair, Albuterol, and Pulmozyme, That's it for the lungs ( except for antibiotics). I did however start taking L-Lysine to help with the bleeding in my lungs and it has helped a bit. Maybe you may want to try looking into that ....</end quote></div>
Diane, I came across your response trying to find info on H.S. I see that you take L-Lysine for bleeding in the lungs. I have taken this for years because it is supposed to help prevent cold sores. I have never had problems with coughing up blood; just wonder if the Lysine has helped. Just thought I'd mention that.
No Lauren i dont take Singulair. I take Advair, Albuterol, and Pulmozyme, That's it for the lungs ( except for antibiotics). I did however start taking L-Lysine to help with the bleeding in my lungs and it has helped a bit. Maybe you may want to try looking into that ....</end quote></div>
Diane, I came across your response trying to find info on H.S. I see that you take L-Lysine for bleeding in the lungs. I have taken this for years because it is supposed to help prevent cold sores. I have never had problems with coughing up blood; just wonder if the Lysine has helped. Just thought I'd mention that.
I have found the problem to be fungus and since be on Itraconazole, a fairly high dose, I have not had (knock on wood) a bad bleed in a year or so. I had them to the point of going in to the hospital, but never had to have it cautorized, my doctor wasn't real thrilled about having that done anyway. I have been on HS for 6 months now, I have also been exercising more and lifting weights, but I have had no bleeding other than really light streaking. I like the HS and I believe I heard from my CF nurse that some study showed it lowered instances of bleeding. But TOBI always made me bleed.
Sarah
29 w/cf
Sarah
29 w/cf
Sarah, I hope you look at this again since you were on as anon. I don't have anyway else to contact you. I recently started culturing aspergillus (fungus) in my lungs. Is this what you have/had that required Itraconazole? Do you know what your igE levels were prior to being put on the Itraconazole? My doctor said that unless I have elevated igE levels that I am not allergic to aspergillus and that if I'm not allergic (ABPA) then I don't require treatment. I do however have an increase in hemoptysis but still no major bleeds...I'd like to keep it that way. Please feel free to PM me if you have an account I'd love to chat in more depth with you about this. We can do it here though as I'm sure someone else might find it interesting. Oh I hope you see this.
my65roses4me
New member
<span style=" font-size: small;">I started having hemoptysis when I
was 21. It was about two months after I started Pulmozyme. The dr's
started me on Tobi to "help" keep infection down because
of the bleeding. I was on this for two years when at the same time
my hemoptysis was getting worse. I had to have about 23
embolizations. Not kidding. I have been thru hell and back with
hemoptysis. When I was about 23 I had the worst bleed ever. It was
more like hemoraging. I had three blood transfusions and another
embolizaton with no avail. They finally decide to take out the part
of my lung that was bleeding. They took out a whole lobe of my left
upper side. I still had hemoptysis after that but not as bad. I
finally got it thru the Dr's heads that the pulmo and tobi were
causing all of this. They finally dc'd both meds. I have been
better since. I now have bronchectisis that causes small bleeds. I
am 31 now. I now take HS. It works great by keeping me clearer and
hasn't made my hemoptysis worse at all. I have been taking it for
about 2 months now. I will be sure to reprt back to all of you if I
notice an increase.
was 21. It was about two months after I started Pulmozyme. The dr's
started me on Tobi to "help" keep infection down because
of the bleeding. I was on this for two years when at the same time
my hemoptysis was getting worse. I had to have about 23
embolizations. Not kidding. I have been thru hell and back with
hemoptysis. When I was about 23 I had the worst bleed ever. It was
more like hemoraging. I had three blood transfusions and another
embolizaton with no avail. They finally decide to take out the part
of my lung that was bleeding. They took out a whole lobe of my left
upper side. I still had hemoptysis after that but not as bad. I
finally got it thru the Dr's heads that the pulmo and tobi were
causing all of this. They finally dc'd both meds. I have been
better since. I now have bronchectisis that causes small bleeds. I
am 31 now. I now take HS. It works great by keeping me clearer and
hasn't made my hemoptysis worse at all. I have been taking it for
about 2 months now. I will be sure to reprt back to all of you if I
notice an increase.
lovingBenandCambree
New member
I have had severe hemoptysis and had to have 3 embolizations. I have been on HS for 4 months and I absolutely love it. I can only tolerate 3% but it still works wonders for me. It has not caused anymore hemoptysis for me.
lovingBenandCambree
New member
*repeat message* sorry
blackchameleon
New member
hypertonic saline is a wonderful help for me. i have been
"using" for 4 years now and believe it helps me clear my
lungs out better than any other "med". my fev1 was at
65-70% around 6 years ago and started dropping rapidly as the PA
really took hold of my lungs.4 years ago my fev1 was @ 35% and my
drs were talking transplant in the near future. i started trialling
HS as i felt i had nothing to lose and i felt the salt air from the
beach helped me. now 4 years on my fev1 is around 65% again and my
quality of life is enormously better. now this is the bit i feel
made the REAL difference, excersize! it was only through
persistence and mongrel determination that i have turned my health
around, hypertonic saline gave me the opportunity to do the
excersize if i could motivate myself, just sucking the stuff in
everyday was a help but its not the a miracle fix IMO. oh and my
bleeding improved greatly after getting a little worse at first, i
think it was about learning to control my coughing and concentrate
on huffing. i use up to 10% mix now depending on my asthma, the
higher percentage the more effective my lung clearance. i have gone
from being on home oxygen and being exhausted from walking up our
steps to now swimming 2 km most days--- amazing really. not sure if
this is truly any help re the bleeding however i hope it is
encouraging to someone!! Blackchameleon
"using" for 4 years now and believe it helps me clear my
lungs out better than any other "med". my fev1 was at
65-70% around 6 years ago and started dropping rapidly as the PA
really took hold of my lungs.4 years ago my fev1 was @ 35% and my
drs were talking transplant in the near future. i started trialling
HS as i felt i had nothing to lose and i felt the salt air from the
beach helped me. now 4 years on my fev1 is around 65% again and my
quality of life is enormously better. now this is the bit i feel
made the REAL difference, excersize! it was only through
persistence and mongrel determination that i have turned my health
around, hypertonic saline gave me the opportunity to do the
excersize if i could motivate myself, just sucking the stuff in
everyday was a help but its not the a miracle fix IMO. oh and my
bleeding improved greatly after getting a little worse at first, i
think it was about learning to control my coughing and concentrate
on huffing. i use up to 10% mix now depending on my asthma, the
higher percentage the more effective my lung clearance. i have gone
from being on home oxygen and being exhausted from walking up our
steps to now swimming 2 km most days--- amazing really. not sure if
this is truly any help re the bleeding however i hope it is
encouraging to someone!! Blackchameleon
Scarlett81
New member
Diane,
I have never had hemoptysis in my life. Actually I'd never heard of it till I cam to this site. I started the hyp saline and in 2 weeks I had my first hemopysis! But it went away very quickly. It was also very mild blood, like streaks really.
I just lowered my dosage to 5% instead of 7%. I personally wouldn't <i>not</i> do it bc you're worried about bleeding. Try a low dose maybe? I mean, its just improved my lung function so much.
I have never had hemoptysis in my life. Actually I'd never heard of it till I cam to this site. I started the hyp saline and in 2 weeks I had my first hemopysis! But it went away very quickly. It was also very mild blood, like streaks really.
I just lowered my dosage to 5% instead of 7%. I personally wouldn't <i>not</i> do it bc you're worried about bleeding. Try a low dose maybe? I mean, its just improved my lung function so much.
I am definitely considering trying it since, so far ,everyone who has tried it , say they notice a difference. I already told my nurse if/when i decide to finally try it, i will only use 3% and see how that goes. Hemoptysis is nothing i want to play around with.
-------------------------------------------------------------------------------------------------------------------------
~Vestgirl ~ Irritation / infection to the lungs is one leading reasons for hemoptysis. Other causes could be a broken blook vessel ( usually from repeated infections or very hard coughing) The lungs themselves can get irritated( usually from infection or mucus plugs) and bleed. My largest bleed was caused by a broken blood vessel in one of the main arteries that had a big gaping hole in it that would no longer allow clotting. I was told our blood vessels get twisted and bent which makes them weaker and more susceptible to breakage. Irritation and infection just add to the mix .
-------------------------------------------------------------------------------------------------------------------------
~Vestgirl ~ Irritation / infection to the lungs is one leading reasons for hemoptysis. Other causes could be a broken blook vessel ( usually from repeated infections or very hard coughing) The lungs themselves can get irritated( usually from infection or mucus plugs) and bleed. My largest bleed was caused by a broken blood vessel in one of the main arteries that had a big gaping hole in it that would no longer allow clotting. I was told our blood vessels get twisted and bent which makes them weaker and more susceptible to breakage. Irritation and infection just add to the mix .
Replying to Laurens question. As I previously wrote under Anon.
I am not allergic to Aspergillus (yes that is what I culture). My understanding is that many institutions don't treat unless the patient is allergic. My doc feels that it is the major cause of my bleeds irregardless of the allergic issue. Through blood test we are able to see if I have a high enough drug level in my system with the itraconazole and since my levels are now at there best I have, like I said, been doing much much better. I have done IV amphiteracin - which sucks - but that got my aspergillus down and so I now control it with my higher dose of Itraconazole.
Sarah
29 w/ cf
I am not allergic to Aspergillus (yes that is what I culture). My understanding is that many institutions don't treat unless the patient is allergic. My doc feels that it is the major cause of my bleeds irregardless of the allergic issue. Through blood test we are able to see if I have a high enough drug level in my system with the itraconazole and since my levels are now at there best I have, like I said, been doing much much better. I have done IV amphiteracin - which sucks - but that got my aspergillus down and so I now control it with my higher dose of Itraconazole.
Sarah
29 w/ cf