I'm considering starting progesterone therapy to treat my hemoptysis (I do not cough up blood between periods or when pregnant... when progesterone levels are high). Has anyone else done this? If so, did you do the "mini pill" (progesterone only) OR progesterone therapy like what is administered to some women during pregnancy?<br>I have an appt this afternoon and need to do some info gathering!
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Progesterone therapy for hemoptysis?
- Thread starter jmiller
- Start date
I'm considering starting progesterone therapy to treat my hemoptysis (I do not cough up blood between periods or when pregnant... when progesterone levels are high). Has anyone else done this? If so, did you do the "mini pill" (progesterone only) OR progesterone therapy like what is administered to some women during pregnancy?<br>I have an appt this afternoon and need to do some info gathering!
M
Melly527
Guest
Hello,
I do not take a specific progesterone pill for my hemoptysis, however I have had the same problem and therefore take me regular birth control pill consecutively (skipping placebo week) so that I do not experience the hormone drop. It's worked wonderfully for me and I have not had hemoptysis since.
Hope that helps,
Mel
31 w/CF, married w/ one amazing son (7+months)
I do not take a specific progesterone pill for my hemoptysis, however I have had the same problem and therefore take me regular birth control pill consecutively (skipping placebo week) so that I do not experience the hormone drop. It's worked wonderfully for me and I have not had hemoptysis since.
Hope that helps,
Mel
31 w/CF, married w/ one amazing son (7+months)
M
Melly527
Guest
Hello,
I do not take a specific progesterone pill for my hemoptysis, however I have had the same problem and therefore take me regular birth control pill consecutively (skipping placebo week) so that I do not experience the hormone drop. It's worked wonderfully for me and I have not had hemoptysis since.
Hope that helps,
Mel
31 w/CF, married w/ one amazing son (7+months)
I do not take a specific progesterone pill for my hemoptysis, however I have had the same problem and therefore take me regular birth control pill consecutively (skipping placebo week) so that I do not experience the hormone drop. It's worked wonderfully for me and I have not had hemoptysis since.
Hope that helps,
Mel
31 w/CF, married w/ one amazing son (7+months)
I too did not bleed during pregnancy but pretty much as soon as pregnancy ended (actually the week before I gave birth) it started again. I was never a major bleeder just an area that would just keep breaking and then it would take a few days to be blood free and it would happen again. A few TBSP. of pure red blood. I was put on the mini pill (progesterone only) after birth while breast feeding. The bleeding continued. I gave birth in July'07 and by Jan.'08 I was DONE with dealing with daily bleeds. I wanted to be like I was while I was pregnant - blood free! So I opted for an embolization. I did not fit the criteria for getting a BAE for which there are about 5 reasons. My doctor agreed tho and we went forth. I lost a % point of O2 sat for a year but regained it. I did not loose lung function as a result of the BAE. In Oct. '09 I got the non-hormonal IUD called Paragard as I felt (from my experience) that no hormone therapy was probably the best approach until further studies are done as to what is good for us. 3 years later I have the occasional bleed which is indicative of infection because as soon as I start IVs the blood clears up in a day or two and is gone for months.
I too did not bleed during pregnancy but pretty much as soon as pregnancy ended (actually the week before I gave birth) it started again. I was never a major bleeder just an area that would just keep breaking and then it would take a few days to be blood free and it would happen again. A few TBSP. of pure red blood. I was put on the mini pill (progesterone only) after birth while breast feeding. The bleeding continued. I gave birth in July'07 and by Jan.'08 I was DONE with dealing with daily bleeds. I wanted to be like I was while I was pregnant - blood free! So I opted for an embolization. I did not fit the criteria for getting a BAE for which there are about 5 reasons. My doctor agreed tho and we went forth. I lost a % point of O2 sat for a year but regained it. I did not loose lung function as a result of the BAE. In Oct. '09 I got the non-hormonal IUD called Paragard as I felt (from my experience) that no hormone therapy was probably the best approach until further studies are done as to what is good for us. 3 years later I have the occasional bleed which is indicative of infection because as soon as I start IVs the blood clears up in a day or two and is gone for months.
This is interesting. Since I was a late dx & didn't start bleeds till after I had all 4 of my sons & wouldn't know if it was the same for me.. I did however feel great throughout my pregnancy's (my gi symptoms were so much better) & I have always said there has to be some correlation to pregnancy & how it affects your symptoms. My sister Linda had hemoptysis from age 16 till she passed at age 50 (from breast cancer) we were dxd that year so she went her whole life not knowing she had cf till the very end <img src="i/expressions/face-icon-small-sad.gif" border="0">
This is interesting. Since I was a late dx & didn't start bleeds till after I had all 4 of my sons & wouldn't know if it was the same for me.. I did however feel great throughout my pregnancy's (my gi symptoms were so much better) & I have always said there has to be some correlation to pregnancy & how it affects your symptoms. My sister Linda had hemoptysis from age 16 till she passed at age 50 (from breast cancer) we were dxd that year so she went her whole life not knowing she had cf till the very end <img src="i/expressions/face-icon-small-sad.gif" border="0">
interesting. I wonder if her bleeds were concurrent with her cycle? This might be too personal but do you find that your bleeds correlate with your cycle?
I was prescribed prometrium (200mg) so I'm going to do that and see if it works for me. It should be the closest to mimicking pregnancy... if I could just be pregnant all the time but without any more babies! If it weren't for CF I would totally be a surrogate <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was prescribed prometrium (200mg) so I'm going to do that and see if it works for me. It should be the closest to mimicking pregnancy... if I could just be pregnant all the time but without any more babies! If it weren't for CF I would totally be a surrogate <img src="i/expressions/face-icon-small-smile.gif" border="0">
interesting. I wonder if her bleeds were concurrent with her cycle? This might be too personal but do you find that your bleeds correlate with your cycle?
I was prescribed prometrium (200mg) so I'm going to do that and see if it works for me. It should be the closest to mimicking pregnancy... if I could just be pregnant all the time but without any more babies! If it weren't for CF I would totally be a surrogate <img src="i/expressions/face-icon-small-smile.gif" border="0">
I was prescribed prometrium (200mg) so I'm going to do that and see if it works for me. It should be the closest to mimicking pregnancy... if I could just be pregnant all the time but without any more babies! If it weren't for CF I would totally be a surrogate <img src="i/expressions/face-icon-small-smile.gif" border="0">
Lauren - thanks for sharing this info with me. Can you tell me more about Paragard? IS this only an option if you are certain that you are done having children? I don't think we are ready to permanantly close that door (if there is a cure we would love more!) but if you've had luck with it then I'd be interested to learn more.
Also, were your lung bleeds cyclical in nature before and after pregnancy?
Also, were your lung bleeds cyclical in nature before and after pregnancy?
Lauren - thanks for sharing this info with me. Can you tell me more about Paragard? IS this only an option if you are certain that you are done having children? I don't think we are ready to permanantly close that door (if there is a cure we would love more!) but if you've had luck with it then I'd be interested to learn more.
Also, were your lung bleeds cyclical in nature before and after pregnancy?
Also, were your lung bleeds cyclical in nature before and after pregnancy?
saveferris2009
New member
I have frequent hemoptysis and my Mirena hasn't helped any.
<br>
<br>I get blood clots with my PICC lines, so estrogen-based, systemic BC pills are out for me.
<br>
<br>Mirena's hormones (progesterone) are a bit less systemic and more localized, so the clot chance is dramatically less. In fact, no clots with PICCs since stopping my BC pills 2 years ago.
<br>
<br>Hasn't changed my hemoptysis frequency, though.... wish it did!
<br>
<br>I get blood clots with my PICC lines, so estrogen-based, systemic BC pills are out for me.
<br>
<br>Mirena's hormones (progesterone) are a bit less systemic and more localized, so the clot chance is dramatically less. In fact, no clots with PICCs since stopping my BC pills 2 years ago.
<br>
<br>Hasn't changed my hemoptysis frequency, though.... wish it did!
saveferris2009
New member
I have frequent hemoptysis and my Mirena hasn't helped any.
<br>
<br>I get blood clots with my PICC lines, so estrogen-based, systemic BC pills are out for me.
<br>
<br>Mirena's hormones (progesterone) are a bit less systemic and more localized, so the clot chance is dramatically less. In fact, no clots with PICCs since stopping my BC pills 2 years ago.
<br>
<br>Hasn't changed my hemoptysis frequency, though.... wish it did!
<br>
<br>I get blood clots with my PICC lines, so estrogen-based, systemic BC pills are out for me.
<br>
<br>Mirena's hormones (progesterone) are a bit less systemic and more localized, so the clot chance is dramatically less. In fact, no clots with PICCs since stopping my BC pills 2 years ago.
<br>
<br>Hasn't changed my hemoptysis frequency, though.... wish it did!
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i> I have always said there has to be some correlation to pregnancy & how it affects your symptoms. <img src=""> </end quote>
<br><br>Joni experts think this is because your body's immune system (and thus inflammation) is down-regulated while pregnant.<br>Basically, you are carrying a foreign entity in your body and you need your body not to attack it (I know, sounds crazy, but it's the truth), so the immune system really dials down while pregnant.<br>With the immune system calming down, inflammation (and markers of inflammation) in the body, including lungs, decreases quite noticeably.<br>So as far as the most research I have seen, the great feeling during pregnancy is NOT related to pregnancy related hormones - otherwise we would all feel great while taking meds with progesterone (levonorgestrel) including Noroplant, some oral BC pills, etc.
<br><br>Joni experts think this is because your body's immune system (and thus inflammation) is down-regulated while pregnant.<br>Basically, you are carrying a foreign entity in your body and you need your body not to attack it (I know, sounds crazy, but it's the truth), so the immune system really dials down while pregnant.<br>With the immune system calming down, inflammation (and markers of inflammation) in the body, including lungs, decreases quite noticeably.<br>So as far as the most research I have seen, the great feeling during pregnancy is NOT related to pregnancy related hormones - otherwise we would all feel great while taking meds with progesterone (levonorgestrel) including Noroplant, some oral BC pills, etc.
saveferris2009
New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>BelEAche</b></i> I have always said there has to be some correlation to pregnancy & how it affects your symptoms. <img src=""> </end quote>
<br><br>Joni experts think this is because your body's immune system (and thus inflammation) is down-regulated while pregnant.<br>Basically, you are carrying a foreign entity in your body and you need your body not to attack it (I know, sounds crazy, but it's the truth), so the immune system really dials down while pregnant.<br>With the immune system calming down, inflammation (and markers of inflammation) in the body, including lungs, decreases quite noticeably.<br>So as far as the most research I have seen, the great feeling during pregnancy is NOT related to pregnancy related hormones - otherwise we would all feel great while taking meds with progesterone (levonorgestrel) including Noroplant, some oral BC pills, etc.
<br><br>Joni experts think this is because your body's immune system (and thus inflammation) is down-regulated while pregnant.<br>Basically, you are carrying a foreign entity in your body and you need your body not to attack it (I know, sounds crazy, but it's the truth), so the immune system really dials down while pregnant.<br>With the immune system calming down, inflammation (and markers of inflammation) in the body, including lungs, decreases quite noticeably.<br>So as far as the most research I have seen, the great feeling during pregnancy is NOT related to pregnancy related hormones - otherwise we would all feel great while taking meds with progesterone (levonorgestrel) including Noroplant, some oral BC pills, etc.