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Hemoptysis - Solution without Embolization

B

BreetheFree

Guest
Still trying to figure out this forum thing... sorry about the double posts...<br><br style="font-weight: bold;"><font size="6"><span style="color: rgb(0, 0, 255);">I emailed the authors of the above article and told him that there are 3 people that I know are using tranexamic acid successfully to stop hemoptysis so if he would like us to be part of his study let me know.  Here's what he wrote back.</font><br><br><pre>Dear Mark,<br> <br>Very many thanks for your interest in our article, and for getting in touch.<br> <br>As you probably know, there is very little evidence to support the use of<br>tranexamic acid in patients with CF. However many patients find tranexamic<br>acid useful. <br> <br>In the absence of a clinical trial to determine how effective tranexamic<br>acid is, we wanted start a discussion based on the experience of our patient. <br>The discussion at the Royal Society meeting (from which this article was born) <br>suggests that many patients appear to derive benefit. However in the absence <br>of evidence from a clinical trial, many doctors need to weigh up the benefit <br>over the cost/risks of such treatments.<br> <br>Many thanks once again, with best wishes,<br> <br>Matt Hurley<br> <br>Dr Matthew Hurley<br>Wellcome Trust Clinical Research Fellow<br>Child Health<br>School of Clinical Sciences<br>E Floor East Block<br>Queens Medical Centre<br>Nottingham<br><br><font size="3"><span style="color: rgb(0, 0, 255); font-family: arial;">My Comment:<br style="font-family: arial;"></font><font size="3"><span style="font-family: arial; color: rgb(0, 0, 255);">---Unfortunately and fortunately TA is available in generic form so there is little financial motivation for big drug <br>companies to do a study on it to test it's</font><span style="font-family: arial;"><font size="3"><span style="color: rgb(0, 0, 255);"> effectiveness. So I imagine it will be left to the patients and <br>doctors</font><font size="4"><font size="3"><span style="color: rgb(0, 0, 255);"> to use it or not use it. My hope is that someone pick up this drug to study and I would not<br>expect it to happen.</font><span style="color: rgb(0, 0, 255); font-weight: bold;"><br></font></pre><br>
 
B

BreetheFree

Guest
Still trying to figure out this forum thing... sorry about the double posts...<br><br style="font-weight: bold;"><font size="6"><span style="color: rgb(0, 0, 255);">I emailed the authors of the above article and told him that there are 3 people that I know are using tranexamic acid successfully to stop hemoptysis so if he would like us to be part of his study let me know. Here's what he wrote back.</font><br><br><pre>Dear Mark,<br> <br>Very many thanks for your interest in our article, and for getting in touch.<br> <br>As you probably know, there is very little evidence to support the use of<br>tranexamic acid in patients with CF. However many patients find tranexamic<br>acid useful. <br> <br>In the absence of a clinical trial to determine how effective tranexamic<br>acid is, we wanted start a discussion based on the experience of our patient. <br>The discussion at the Royal Society meeting (from which this article was born) <br>suggests that many patients appear to derive benefit. However in the absence <br>of evidence from a clinical trial, many doctors need to weigh up the benefit <br>over the cost/risks of such treatments.<br> <br>Many thanks once again, with best wishes,<br> <br>Matt Hurley<br> <br>Dr Matthew Hurley<br>Wellcome Trust Clinical Research Fellow<br>Child Health<br>School of Clinical Sciences<br>E Floor East Block<br>Queens Medical Centre<br>Nottingham<br><br><font size="3"><span style="color: rgb(0, 0, 255); font-family: arial;">My Comment:<br style="font-family: arial;"></font><font size="3"><span style="font-family: arial; color: rgb(0, 0, 255);">---Unfortunately and fortunately TA is available in generic form so there is little financial motivation for big drug <br>companies to do a study on it to test it's</font><span style="font-family: arial;"><font size="3"><span style="color: rgb(0, 0, 255);"> effectiveness. So I imagine it will be left to the patients and <br>doctors</font><font size="4"><font size="3"><span style="color: rgb(0, 0, 255);"> to use it or not use it. My hope is that someone pick up this drug to study and I would not<br>expect it to happen.</font><span style="color: rgb(0, 0, 255); font-weight: bold;"><br></font></pre><br>
 
B

BreetheFree

Guest
Still trying to figure out this forum thing... sorry about the double posts...<br><br style="font-weight: bold;"><font size="6"><span style="color: rgb(0, 0, 255);">I emailed the authors of the above article and told him that there are 3 people that I know are using tranexamic acid successfully to stop hemoptysis so if he would like us to be part of his study let me know. Here's what he wrote back.</font><br><br><pre>Dear Mark,<br> <br>Very many thanks for your interest in our article, and for getting in touch.<br> <br>As you probably know, there is very little evidence to support the use of<br>tranexamic acid in patients with CF. However many patients find tranexamic<br>acid useful. <br> <br>In the absence of a clinical trial to determine how effective tranexamic<br>acid is, we wanted start a discussion based on the experience of our patient. <br>The discussion at the Royal Society meeting (from which this article was born) <br>suggests that many patients appear to derive benefit. However in the absence <br>of evidence from a clinical trial, many doctors need to weigh up the benefit <br>over the cost/risks of such treatments.<br> <br>Many thanks once again, with best wishes,<br> <br>Matt Hurley<br> <br>Dr Matthew Hurley<br>Wellcome Trust Clinical Research Fellow<br>Child Health<br>School of Clinical Sciences<br>E Floor East Block<br>Queens Medical Centre<br>Nottingham<br><br><font size="3"><span style="color: rgb(0, 0, 255); font-family: arial;">My Comment:<br style="font-family: arial;"></font><font size="3"><span style="font-family: arial; color: rgb(0, 0, 255);">---Unfortunately and fortunately TA is available in generic form so there is little financial motivation for big drug <br>companies to do a study on it to test it's</font><span style="font-family: arial;"><font size="3"><span style="color: rgb(0, 0, 255);"> effectiveness. So I imagine it will be left to the patients and <br>doctors</font><font size="4"><font size="3"><span style="color: rgb(0, 0, 255);"> to use it or not use it. My hope is that someone pick up this drug to study and I would not<br>expect it to happen.</font><span style="color: rgb(0, 0, 255); font-weight: bold;"><br></font></pre><br>
 
C

cf83mp

New member
<P>I would like to know where you find the herb Gotu Kola and if you have had any side effects from the Tranexamic Acid? Can you recommend a specific brand of the Gotu Kola? Lastly, do you only take Tranexamic Acid when you bleed or do you take it regularly? </P>
<P>Thanks,</P>
<P>Meranda, 28 with CF</P>
 
C

cf83mp

New member
<P>I would like to know where you find the herb Gotu Kola and if you have had any side effects from the Tranexamic Acid? Can you recommend a specific brand of the Gotu Kola? Lastly, do you only take Tranexamic Acid when you bleed or do you take it regularly? </P>
<P>Thanks,</P>
<P>Meranda, 28 with CF</P>
 
C

cf83mp

New member
<P>I would like to know where you find the herb Gotu Kola and if you have had any side effects from the Tranexamic Acid? Can you recommend a specific brand of the Gotu Kola? Lastly, do you only take Tranexamic Acid when you bleed or do you take it regularly? <BR></P>
<P>Thanks,</P>
<P>Meranda, 28 with CF</P>
 
L

lizlas

Guest
<P>hi</P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka  cyklocapron 500 mg.</P>
<P> </P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing  frequency and weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>the highest dose  they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</P>
<P> </P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait,  which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole  and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of <STRONG>* (BXTS</STRONG>) and severity of it is not reflected in my PFT s ....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you.  Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P> </P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
 
L

lizlas

Guest
<P>hi</P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka cyklocapron 500 mg.</P>
<P></P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing frequencyand weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>thehighest dose they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</P>
<P></P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait, which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of<STRONG>*(BXTS</STRONG>)and severity of it is not reflected in my PFT s....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you. Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P></P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
 
L

lizlas

Guest
<P><BR>hi<BR></P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka cyklocapron 500 mg.</P>
<P></P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing frequencyand weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>thehighest dose they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</P>
<P></P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait, which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of<STRONG>*(BXTS</STRONG>)and severity of it is not reflected in my PFT s....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you. Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P></P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
 
C

caza

Guest
Thats interesting Lizlas - about the TA - I wonder why some people get benefit from it but then others dont seem to as much.   Glad you seem to have found the answer to your bleeding - to have ivs as soon as your get the more sputum or decrease in lung function.  I  have had mac bacateria and also got the blood - which is very scary no matter how much you have - I just dont know how some people seem to just get back up and carry on after they had a bleed - I sure cant for quite a while.  Anyway I will ask my clinic if they prescribe TA cos I would like to know that there is something they can use - even though some do not get the best results from it.   I wonder if this herb mentioned really works or could be just coincidence - but shouldnt knock it I guess any help is better than none.  Someone once told me about Rutin found in Vit C and it is supposed to help strengthen the capiliaries - as I do think that some people just do bleed more than others.  <br>
 
C

caza

Guest
Thats interesting Lizlas - about the TA - I wonder why some people get benefit from it but then others dont seem to as much. Glad you seem to have found the answer to your bleeding - to have ivs as soon as your get the more sputum or decrease in lung function. I have had mac bacateria and also got the blood - which is very scary no matter how much you have - I just dont know how some people seem to just get back up and carry on after they had a bleed - I sure cant for quite a while. Anyway I will ask my clinic if they prescribe TA cos I would like to know that there is something they can use - even though some do not get the best results from it. I wonder if this herb mentioned really works or could be just coincidence - but shouldnt knock it I guess any help is better than none. Someone once told me about Rutin found in Vit C and it is supposedto help strengthen the capiliaries - as I do think that some people just do bleed more than others. <br>
 
C

caza

Guest
Thats interesting Lizlas - about the TA - I wonder why some people get benefit from it but then others dont seem to as much. Glad you seem to have found the answer to your bleeding - to have ivs as soon as your get the more sputum or decrease in lung function. I have had mac bacateria and also got the blood - which is very scary no matter how much you have - I just dont know how some people seem to just get back up and carry on after they had a bleed - I sure cant for quite a while. Anyway I will ask my clinic if they prescribe TA cos I would like to know that there is something they can use - even though some do not get the best results from it. I wonder if this herb mentioned really works or could be just coincidence - but shouldnt knock it I guess any help is better than none. Someone once told me about Rutin found in Vit C and it is supposedto help strengthen the capiliaries - as I do think that some people just do bleed more than others. <br>
 
A

ashish

Guest
Hello i am a doctor..physician..my wife is BRONCHIECTASIS WITH HEMOPTYSIS, it is almost same as C F so i wantto know about the use of GOTU KOLA for hemoptysis as i am from INDIA here this herb is used but surprisinglyit is being used by pharma indrusties for the brain tonic or for the vitalitry...<br>my question is how u come to know about the use of gotu kola for hemoptysis, i do believe in your experienceand i myself want to be benifited by this herb.So please tell me for the first time how u come to know about the use of gotu kola for hemoptysis...thanksplease do reply as my wife had already under gone 03 BRONCHIAL ARTERY EMBOLIZATION...
 
A

ashish

Guest
Hello i am a doctor..physician..my wife is BRONCHIECTASIS WITH HEMOPTYSIS, it is almost same as C F so i wantto know about the use of GOTU KOLA for hemoptysis as i am from INDIA here this herb is used but surprisinglyit is being used by pharma indrusties for the brain tonic or for the vitalitry...<br>my question is how u come to know about the use of gotu kola for hemoptysis, i do believe in your experienceand i myself want to be benifited by this herb.So please tell me for the first time how u come to know about the use of gotu kola for hemoptysis...thanksplease do reply as my wife had already under gone 03 BRONCHIAL ARTERY EMBOLIZATION...
 
L

lizlas

Guest
<P>Hi Ashish:</P>
<P>Sorry to hear of your wifes problems. I know it is very scary and upsetting.</P>
<P>I doubt if Breathfree will reply , hes not on forum very much....</P>
<P>I dont know how he came across Gotu Kola, but it is a herb which is supposed to strengthen blood vessels...</P>
<P>so regardless where he found out about it, if it is avbailable to you , just start taking it, maybe she has started taking it already.</P>
<P>also can she get on the cyklokapron (tranexamic Acid) ? that seems to help alotof people with hemoptyisis. and also pregesterone.</P>
<P>TA is available here in 500 mg tablets. and has your wife been treated regularly with Iv antibiotics for infections? </P>
<P>What is treatment and cared like for bronchiectais (bxis) and Cf in India. </P>
<P></P>
<P>Sorry I cant be of more help.</P>
<P></P>
<P></P>
 
L

lizlas

Guest
<P>Hi Ashish:</P>
<P>Sorry to hear of your wifes problems. I know it is very scary and upsetting.</P>
<P>I doubt if Breathfree will reply , hes not on forum very much....</P>
<P>I dont know how he came across Gotu Kola, but it is a herb which is supposed to strengthen blood vessels...</P>
<P>so regardless where he found out about it, if it is avbailable to you , just start taking it, maybe she has started taking it already.</P>
<P>also can she get on the cyklokapron (tranexamic Acid) ? that seems to help alotof people with hemoptyisis. and also pregesterone.</P>
<P>TA is available here in 500 mg tablets. and has your wife been treated regularly with Iv antibiotics for infections? </P>
<P>What is treatment and cared like for bronchiectais (bxis) and Cf in India. </P>
<P></P>
<P>Sorry I cant be of more help.</P>
<P></P>
<P></P>
 
A

ashish

Guest
THANKS

I had started the GOLU-KOTA 350mg cap since one month,
she is also on the TA 5OOmg off and on

to be honest gotu-kola is helping but its too early...
ashish
 
A

ashish

Guest
THANKS

I had started the GOLU-KOTA 350mg cap since one month,
she is also on the TA 5OOmg off and on

to be honest gotu-kola is helping but its too early...
ashish
 
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