B
BreetheFree
Guest
<br>
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an alternative browser.
You should upgrade or use an alternative browser.
B
BreetheFree
Guest
<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>
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>
<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>
<P>Thanks,</P>
<P>Meranda, 28 with CF</P>
<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>
<P>Thanks,</P>
<P>Meranda, 28 with CF</P>
<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>
<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$.</P>
<P> </P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait, which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of <STRONG>* (BXTS</STRONG>) and severity of it is not reflected in my PFT s ....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you. Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P> </P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka cyklocapron 500 mg.</P>
<P> </P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing frequency and weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>the highest dose they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</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$.</P>
<P></P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait, which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of<STRONG>*(BXTS</STRONG>)and severity of it is not reflected in my PFT s....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you. Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P></P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka cyklocapron 500 mg.</P>
<P></P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing frequencyand weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>thehighest dose they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</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$.</P>
<P></P>
<P>The thing that helps me is IV Antibiotics,,,,IV antibiotics!!! and more IV antibiotics...(within the first week or so of increased sputum)....not a long wait, which unfortunately had been happening to me, as I dont get much of a fever or much of a rise in WBC...IV antibiotics were delayed </P>
<P>and then the Hmoptysis was harder to get under control....I was not pleased and extremely upset with the delay...and now I can feel my lungs dont feel as good and neithr do I as a whole and cant keep FEV at 100...keeps wanting to go to 90%...the dr, said.the amount of<STRONG>*(BXTS</STRONG>)and severity of it is not reflected in my PFT s....I think it is, I used to be 118 ish in 2005..</P>
<P>Hope the cyklocapron does help all of you. Im going to hunt down the Gotu Kola today....</P>
<P>also at only 6 pills a day ...the picc line was removed because even on that amount dr. said can get clots along line....</P>
<P></P>
<P>*bronchiectasis <STRONG>(BXTS)</STRONG></P>
<P>The clinic I go to in toronto uses tranexamic acid.....aka cyklocapron 500 mg.</P>
<P></P>
<P>I have been on it 6 pills a day ...3000 mg and it didn treally help me....and I was having small amounts of hemoptysis compared to what I am reading about here ...still upsetting and it was occurring with increasing frequencyand weekly which was unusal for me.</P>
<P>My Dr. said for some people it definately helps and stops the bleeding.</P>
<P>thehighest dose they have given to one patient is 16 pills...8,000 mg</P>
<P>100 pills cost 144$.</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>
<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>
<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
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
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