Please help me..I need relief

M

mb101

New member
Hello. I seem to be going through a tough time with my health. This year has been a horrible one for me, so I'll spare everyone the details. Anyway, I have a history of massive hemoptysis. This year it has been worse than ever for me as complications landed me in the ICU and on a ventilator. That was in April and ever since then I've had trouble breathing. In the past when I'd have trouble, I would take an Ibuprofen or some turmeric and I'd be just fine again. My breathing problems have always been due to inflammation.

After my situation in April I have noticed that I do not tolerate anti-inflammatory drugs or foods as well because they set off my hemoptysis pretty easily. Same goes for when I use pulmozyme. After 3 or 4 doses I cough up blood. My doctors have never told me what I should avoid to prevent my bouts of hemoptysis. I was trying to research if using Singulair would be safe for me, but I have had little luck.

Please, does anyone know if it would be ok for me to take singulair? If not, is there any other way to treat inflammation without setting off my hemoptysis? I'm so tired of trying to breathe, it hurts.
 
M

mb101

New member
Hello. I seem to be going through a tough time with my health. This year has been a horrible one for me, so I'll spare everyone the details. Anyway, I have a history of massive hemoptysis. This year it has been worse than ever for me as complications landed me in the ICU and on a ventilator. That was in April and ever since then I've had trouble breathing. In the past when I'd have trouble, I would take an Ibuprofen or some turmeric and I'd be just fine again. My breathing problems have always been due to inflammation.

After my situation in April I have noticed that I do not tolerate anti-inflammatory drugs or foods as well because they set off my hemoptysis pretty easily. Same goes for when I use pulmozyme. After 3 or 4 doses I cough up blood. My doctors have never told me what I should avoid to prevent my bouts of hemoptysis. I was trying to research if using Singulair would be safe for me, but I have had little luck.

Please, does anyone know if it would be ok for me to take singulair? If not, is there any other way to treat inflammation without setting off my hemoptysis? I'm so tired of trying to breathe, it hurts.
 
M

mb101

New member
Hello. I seem to be going through a tough time with my health. This year has been a horrible one for me, so I'll spare everyone the details. Anyway, I have a history of massive hemoptysis. This year it has been worse than ever for me as complications landed me in the ICU and on a ventilator. That was in April and ever since then I've had trouble breathing. In the past when I'd have trouble, I would take an Ibuprofen or some turmeric and I'd be just fine again. My breathing problems have always been due to inflammation.
<br />
<br />After my situation in April I have noticed that I do not tolerate anti-inflammatory drugs or foods as well because they set off my hemoptysis pretty easily. Same goes for when I use pulmozyme. After 3 or 4 doses I cough up blood. My doctors have never told me what I should avoid to prevent my bouts of hemoptysis. I was trying to research if using Singulair would be safe for me, but I have had little luck.
<br />
<br />Please, does anyone know if it would be ok for me to take singulair? If not, is there any other way to treat inflammation without setting off my hemoptysis? I'm so tired of trying to breathe, it hurts.
 
S

shal624

New member
well a humidifier would probably help with that. helps make the cell walls of ur lungs stronger, but also would contribute to more mucus. also, sounds like a time for steroids like prednisone to help get ur inflammation under control. singulair might help, but inhalers might too. have you been diagnosed with a blood condition? cause it sound like the anti-inflammatory drugs could be thinning your blood too much to cause your vessles to be leaky. just some thoughts. best thing to do is to talk with your doctor.
 
S

shal624

New member
well a humidifier would probably help with that. helps make the cell walls of ur lungs stronger, but also would contribute to more mucus. also, sounds like a time for steroids like prednisone to help get ur inflammation under control. singulair might help, but inhalers might too. have you been diagnosed with a blood condition? cause it sound like the anti-inflammatory drugs could be thinning your blood too much to cause your vessles to be leaky. just some thoughts. best thing to do is to talk with your doctor.
 
S

shal624

New member
well a humidifier would probably help with that. helps make the cell walls of ur lungs stronger, but also would contribute to more mucus. also, sounds like a time for steroids like prednisone to help get ur inflammation under control. singulair might help, but inhalers might too. have you been diagnosed with a blood condition? cause it sound like the anti-inflammatory drugs could be thinning your blood too much to cause your vessles to be leaky. just some thoughts. best thing to do is to talk with your doctor.
 
M

moxie1

Guest
I've dealt with hemo in the pass to the point of having 3 bronchial artery emoblizations.

They really didn't stop the bleeding. Nothing stopped it until I stopped the Pulmozyme. They day after I stopped that, the bleeding shut off like a faucet. I ended up going back on it, because without it my pfts dropped.

However, my dose is greatly reduced. I only do Pulmozyme once every three days instead of twice a day. The other days I do 7% Hypertonic Saline (I started out at 3% to see if I would tolerate it). It seems to be the perfect dose for me. Pfts are stable and no bleeding. (It's been over three years now).

You are going to have to experiment to see how your body handles things. Start keeping a bleeding diary to see how changes might affect things. Maybe Pulmozyme is also a culprit for you...maybe it is something else.

One thing that I came across somewhere is the use of cayenne pepper being useful for bleeding. It said to put a 1/4 tsp in a glass of water and sip at it. You might try that the next time you have a bleed.
 
M

moxie1

Guest
I've dealt with hemo in the pass to the point of having 3 bronchial artery emoblizations.

They really didn't stop the bleeding. Nothing stopped it until I stopped the Pulmozyme. They day after I stopped that, the bleeding shut off like a faucet. I ended up going back on it, because without it my pfts dropped.

However, my dose is greatly reduced. I only do Pulmozyme once every three days instead of twice a day. The other days I do 7% Hypertonic Saline (I started out at 3% to see if I would tolerate it). It seems to be the perfect dose for me. Pfts are stable and no bleeding. (It's been over three years now).

You are going to have to experiment to see how your body handles things. Start keeping a bleeding diary to see how changes might affect things. Maybe Pulmozyme is also a culprit for you...maybe it is something else.

One thing that I came across somewhere is the use of cayenne pepper being useful for bleeding. It said to put a 1/4 tsp in a glass of water and sip at it. You might try that the next time you have a bleed.
 
M

moxie1

Guest
I've dealt with hemo in the pass to the point of having 3 bronchial artery emoblizations.
<br />
<br />They really didn't stop the bleeding. Nothing stopped it until I stopped the Pulmozyme. They day after I stopped that, the bleeding shut off like a faucet. I ended up going back on it, because without it my pfts dropped.
<br />
<br />However, my dose is greatly reduced. I only do Pulmozyme once every three days instead of twice a day. The other days I do 7% Hypertonic Saline (I started out at 3% to see if I would tolerate it). It seems to be the perfect dose for me. Pfts are stable and no bleeding. (It's been over three years now).
<br />
<br />You are going to have to experiment to see how your body handles things. Start keeping a bleeding diary to see how changes might affect things. Maybe Pulmozyme is also a culprit for you...maybe it is something else.
<br />
<br />One thing that I came across somewhere is the use of cayenne pepper being useful for bleeding. It said to put a 1/4 tsp in a glass of water and sip at it. You might try that the next time you have a bleed.
 
J

JORDYSMOM

New member
I'm sorry you are struggling so much. If your doctors are not taking a proactive stance with you, think about getting a second opinion. Some docs/clincs are so passive about these things, and seem to feel that it is just normal CF progression. You don't have to jut accept it.

You said you feel that a lot of your problems are due to inflammation. If so, you might try a change in your diet. Going on an anti-inlfammatory diet could help tremendously. Of course, make sure you pay attention to your CFRD while making these diet changes. Also, keeping allergies under control is vital. Allergies cause so much inflammation, and they have been a major cause in many exacerbations for my son. I've never know singulair to contribute to hemoptysis. It worked well for Jordan.

Definitely look at your surroundings too. There may be things you can do to eliminate irritants in your home. We removed our carpet, and bought leather furniture. It helped all of us breathe better. Our entire family has very severe allergies.

I hope you find some answers, and can feel better soon.

Stacey
 
J

JORDYSMOM

New member
I'm sorry you are struggling so much. If your doctors are not taking a proactive stance with you, think about getting a second opinion. Some docs/clincs are so passive about these things, and seem to feel that it is just normal CF progression. You don't have to jut accept it.

You said you feel that a lot of your problems are due to inflammation. If so, you might try a change in your diet. Going on an anti-inlfammatory diet could help tremendously. Of course, make sure you pay attention to your CFRD while making these diet changes. Also, keeping allergies under control is vital. Allergies cause so much inflammation, and they have been a major cause in many exacerbations for my son. I've never know singulair to contribute to hemoptysis. It worked well for Jordan.

Definitely look at your surroundings too. There may be things you can do to eliminate irritants in your home. We removed our carpet, and bought leather furniture. It helped all of us breathe better. Our entire family has very severe allergies.

I hope you find some answers, and can feel better soon.

Stacey
 
J

JORDYSMOM

New member
I'm sorry you are struggling so much. If your doctors are not taking a proactive stance with you, think about getting a second opinion. Some docs/clincs are so passive about these things, and seem to feel that it is just normal CF progression. You don't have to jut accept it.
<br />
<br />You said you feel that a lot of your problems are due to inflammation. If so, you might try a change in your diet. Going on an anti-inlfammatory diet could help tremendously. Of course, make sure you pay attention to your CFRD while making these diet changes. Also, keeping allergies under control is vital. Allergies cause so much inflammation, and they have been a major cause in many exacerbations for my son. I've never know singulair to contribute to hemoptysis. It worked well for Jordan.
<br />
<br />Definitely look at your surroundings too. There may be things you can do to eliminate irritants in your home. We removed our carpet, and bought leather furniture. It helped all of us breathe better. Our entire family has very severe allergies.
<br />
<br />I hope you find some answers, and can feel better soon.
<br />
<br />Stacey
 
M

mb101

New member
I'm sure the Pulmozyme is what caused this small bleed. I also space out my doses but for the past few weeks I've been having a deal of trouble coughing things out, so I've needed to use it more than usual. As of March of this year I'm having a hard time breathing almost 24/7 and I'm sure it's due to inflammation...I can feel it. Like I said, in the past I'd just use some turmeric or ibuprofen but I can't handle taking that stuff anymore because my hemoptysis is triggered so easily now.

I just want to find something that I can take for inflammation that will not cause me to bleed and the first thing I thought of is Singulair. There has to be something out there. Also, a couple of months ago my doctors put me on Tramadol because of rib and back pains when I breathe in deep or cough. I have read that Tramadol is not an NSAID, but it sure does have some sort of anti-inflammatory effect because when I take it every now and then, I get some relief. The problem with that is it only lasts a short time. Turmeric or an Ibuprofen used to hold me over for at least a couple of hours.

I've tried changing my diet and my home environment (we also had our carpets replaced with hardwood floors) but none of that seemed to help much. The bugs I have in my lungs are resistant to almost everything so I'm assuming my immune system is going nuts trying to fight it off, thus keeping my lungs inflamed. Like I said, all I want is to find some sort of inflammation relief that won't make me bleed.

I want to thank all of you for your time, thoughts and suggestions so far. It feels good to be able to come here and talk to folks who experience the same things as you do and know what you're talking about. I'm going to give my doctor a call tomorrow and ask about the Singulair and I pray that it is a safe option for me.

(Oh, just wanted to let it be known that I too have had 4 bouts of massive hemoptysis, 3 embolizations. My most recent and worst being this past April. First embolization something went wrong and they couldn't stop the bleeding so they left me on the ventilator so they could keep suctioning the blood and junk from my lungs as it kept on. Next day I had a second procedure done, but I was on the ventilator for a total of 3 days. When I was taken off of the machine I had lost enough blood that I needed a transfusion and received 2 units.)
 
M

mb101

New member
I'm sure the Pulmozyme is what caused this small bleed. I also space out my doses but for the past few weeks I've been having a deal of trouble coughing things out, so I've needed to use it more than usual. As of March of this year I'm having a hard time breathing almost 24/7 and I'm sure it's due to inflammation...I can feel it. Like I said, in the past I'd just use some turmeric or ibuprofen but I can't handle taking that stuff anymore because my hemoptysis is triggered so easily now.

I just want to find something that I can take for inflammation that will not cause me to bleed and the first thing I thought of is Singulair. There has to be something out there. Also, a couple of months ago my doctors put me on Tramadol because of rib and back pains when I breathe in deep or cough. I have read that Tramadol is not an NSAID, but it sure does have some sort of anti-inflammatory effect because when I take it every now and then, I get some relief. The problem with that is it only lasts a short time. Turmeric or an Ibuprofen used to hold me over for at least a couple of hours.

I've tried changing my diet and my home environment (we also had our carpets replaced with hardwood floors) but none of that seemed to help much. The bugs I have in my lungs are resistant to almost everything so I'm assuming my immune system is going nuts trying to fight it off, thus keeping my lungs inflamed. Like I said, all I want is to find some sort of inflammation relief that won't make me bleed.

I want to thank all of you for your time, thoughts and suggestions so far. It feels good to be able to come here and talk to folks who experience the same things as you do and know what you're talking about. I'm going to give my doctor a call tomorrow and ask about the Singulair and I pray that it is a safe option for me.

(Oh, just wanted to let it be known that I too have had 4 bouts of massive hemoptysis, 3 embolizations. My most recent and worst being this past April. First embolization something went wrong and they couldn't stop the bleeding so they left me on the ventilator so they could keep suctioning the blood and junk from my lungs as it kept on. Next day I had a second procedure done, but I was on the ventilator for a total of 3 days. When I was taken off of the machine I had lost enough blood that I needed a transfusion and received 2 units.)
 
M

mb101

New member
I'm sure the Pulmozyme is what caused this small bleed. I also space out my doses but for the past few weeks I've been having a deal of trouble coughing things out, so I've needed to use it more than usual. As of March of this year I'm having a hard time breathing almost 24/7 and I'm sure it's due to inflammation...I can feel it. Like I said, in the past I'd just use some turmeric or ibuprofen but I can't handle taking that stuff anymore because my hemoptysis is triggered so easily now.
<br />
<br />I just want to find something that I can take for inflammation that will not cause me to bleed and the first thing I thought of is Singulair. There has to be something out there. Also, a couple of months ago my doctors put me on Tramadol because of rib and back pains when I breathe in deep or cough. I have read that Tramadol is not an NSAID, but it sure does have some sort of anti-inflammatory effect because when I take it every now and then, I get some relief. The problem with that is it only lasts a short time. Turmeric or an Ibuprofen used to hold me over for at least a couple of hours.
<br />
<br />I've tried changing my diet and my home environment (we also had our carpets replaced with hardwood floors) but none of that seemed to help much. The bugs I have in my lungs are resistant to almost everything so I'm assuming my immune system is going nuts trying to fight it off, thus keeping my lungs inflamed. Like I said, all I want is to find some sort of inflammation relief that won't make me bleed.
<br />
<br />I want to thank all of you for your time, thoughts and suggestions so far. It feels good to be able to come here and talk to folks who experience the same things as you do and know what you're talking about. I'm going to give my doctor a call tomorrow and ask about the Singulair and I pray that it is a safe option for me.
<br />
<br />(Oh, just wanted to let it be known that I too have had 4 bouts of massive hemoptysis, 3 embolizations. My most recent and worst being this past April. First embolization something went wrong and they couldn't stop the bleeding so they left me on the ventilator so they could keep suctioning the blood and junk from my lungs as it kept on. Next day I had a second procedure done, but I was on the ventilator for a total of 3 days. When I was taken off of the machine I had lost enough blood that I needed a transfusion and received 2 units.)
 
M

my65roses4me

New member
This last feb was my 24th embolization and I have had a lobectomy too. So I know what hemo is like. We have to walk a thin line when it comes to what we take for pain and inflamation. I have not ever found anything that helps. Every once in awhile when pain gets tough I take aleve although it has blood thinning properties but it helps alot. Hemo is so hard to deal with and its been about 13 yrs for me and many tranfusions later still no answers. But I know what started it for sure...pulmozyme and tobi. They started my first bout and many more before i finally convinced my drs that those meds were the culprit. But now there is perm damage.
Also my menstral period seems to be linked to it now.
Sorry about my ramble but this is so close to my heart and hate to see others affected so horribly by it.
I hope you find what works. Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

my65roses4me

New member
This last feb was my 24th embolization and I have had a lobectomy too. So I know what hemo is like. We have to walk a thin line when it comes to what we take for pain and inflamation. I have not ever found anything that helps. Every once in awhile when pain gets tough I take aleve although it has blood thinning properties but it helps alot. Hemo is so hard to deal with and its been about 13 yrs for me and many tranfusions later still no answers. But I know what started it for sure...pulmozyme and tobi. They started my first bout and many more before i finally convinced my drs that those meds were the culprit. But now there is perm damage.
Also my menstral period seems to be linked to it now.
Sorry about my ramble but this is so close to my heart and hate to see others affected so horribly by it.
I hope you find what works. Hugs! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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