Sinus/Allergy Issue

[etabetac]

I'm sorry I ask for more help than I give. I'm having some issues I hope someone can help me think about or solve.

I have really severe allergies plus really bad asthma and a lot of sinus issues. They all interact with each other (and also mess around with a little thing that begins with a c). On top of it I have high IgE levels (but I do not have APBA which is everyone's initial thought when I first see them, though I allergy test postive to all other molds). I've had several allergy tests (intradermal, RAST, etc.) over the last 5 years.

My problem is allergy medicine and nasal steroids are no longer helping. Some time ago we switched over to alcohol-free, scent-free nasal steroids. That solved the problem for a little bit but now I have a pardoxical reaction to the nasal steroids (read: nonstop sneezing for periods of several minutes). Also the allergy medicine is not helping (I take singular and a double dose of zyrtec). I also do sinus rinses with hypertonic saline. I've tried allergy shots with no noticeable difference. My dr will not prescribe xolair b/c of the high risk in my case for a reaction to it (and I think I'm fine with that). I am maxed out on asthma drugs. I've had all kinds of testing to make sure it's not some other disease.

I am having fairly frequent nose bleeds, bouts of non-stop sneezing, significant (post and regular) nasal drainage, and all the regular allergy symptoms (itchy eyes, wheezing). I do have some sinus scarring and the beginning of polyps but we are not ready to operate yet.

I have allergy proofed where I live. Hardwood floors, nothing in the bedroom besides the bed, real hepa filter air filters, hepa air filters on the a/c and heat, no mold damage, no pets, use mask if I clean, allergy covers, etc. I have these problems regardless of location (though they are worst outside).

I am very uncomfortable. It is affecting my quality of life, my ability to exercise (which I did manage to do until today) and breathe. Has anyone found a solution or way to improve quality of life? I need to get off of the double dose of zyrtec, in particular, because it dries me out but it's the only thing really helping me with asthma as a result of allergies and keeping hives under control.

Thanks for any help or advice!

 

[etabetac]

I'm sorry I ask for more help than I give. I'm having some issues I hope someone can help me think about or solve.

I have really severe allergies plus really bad asthma and a lot of sinus issues. They all interact with each other (and also mess around with a little thing that begins with a c). On top of it I have high IgE levels (but I do not have APBA which is everyone's initial thought when I first see them, though I allergy test postive to all other molds). I've had several allergy tests (intradermal, RAST, etc.) over the last 5 years.

My problem is allergy medicine and nasal steroids are no longer helping. Some time ago we switched over to alcohol-free, scent-free nasal steroids. That solved the problem for a little bit but now I have a pardoxical reaction to the nasal steroids (read: nonstop sneezing for periods of several minutes). Also the allergy medicine is not helping (I take singular and a double dose of zyrtec). I also do sinus rinses with hypertonic saline. I've tried allergy shots with no noticeable difference. My dr will not prescribe xolair b/c of the high risk in my case for a reaction to it (and I think I'm fine with that). I am maxed out on asthma drugs. I've had all kinds of testing to make sure it's not some other disease.

I am having fairly frequent nose bleeds, bouts of non-stop sneezing, significant (post and regular) nasal drainage, and all the regular allergy symptoms (itchy eyes, wheezing). I do have some sinus scarring and the beginning of polyps but we are not ready to operate yet.

I have allergy proofed where I live. Hardwood floors, nothing in the bedroom besides the bed, real hepa filter air filters, hepa air filters on the a/c and heat, no mold damage, no pets, use mask if I clean, allergy covers, etc. I have these problems regardless of location (though they are worst outside).

I am very uncomfortable. It is affecting my quality of life, my ability to exercise (which I did manage to do until today) and breathe. Has anyone found a solution or way to improve quality of life? I need to get off of the double dose of zyrtec, in particular, because it dries me out but it's the only thing really helping me with asthma as a result of allergies and keeping hives under control.

Thanks for any help or advice!

 

[etabetac]

I'm sorry I ask for more help than I give. I'm having some issues I hope someone can help me think about or solve.

I have really severe allergies plus really bad asthma and a lot of sinus issues. They all interact with each other (and also mess around with a little thing that begins with a c). On top of it I have high IgE levels (but I do not have APBA which is everyone's initial thought when I first see them, though I allergy test postive to all other molds). I've had several allergy tests (intradermal, RAST, etc.) over the last 5 years.

My problem is allergy medicine and nasal steroids are no longer helping. Some time ago we switched over to alcohol-free, scent-free nasal steroids. That solved the problem for a little bit but now I have a pardoxical reaction to the nasal steroids (read: nonstop sneezing for periods of several minutes). Also the allergy medicine is not helping (I take singular and a double dose of zyrtec). I also do sinus rinses with hypertonic saline. I've tried allergy shots with no noticeable difference. My dr will not prescribe xolair b/c of the high risk in my case for a reaction to it (and I think I'm fine with that). I am maxed out on asthma drugs. I've had all kinds of testing to make sure it's not some other disease.

I am having fairly frequent nose bleeds, bouts of non-stop sneezing, significant (post and regular) nasal drainage, and all the regular allergy symptoms (itchy eyes, wheezing). I do have some sinus scarring and the beginning of polyps but we are not ready to operate yet.

I have allergy proofed where I live. Hardwood floors, nothing in the bedroom besides the bed, real hepa filter air filters, hepa air filters on the a/c and heat, no mold damage, no pets, use mask if I clean, allergy covers, etc. I have these problems regardless of location (though they are worst outside).

I am very uncomfortable. It is affecting my quality of life, my ability to exercise (which I did manage to do until today) and breathe. Has anyone found a solution or way to improve quality of life? I need to get off of the double dose of zyrtec, in particular, because it dries me out but it's the only thing really helping me with asthma as a result of allergies and keeping hives under control.

Thanks for any help or advice!

 

[etabetac]

I'm sorry I ask for more help than I give. I'm having some issues I hope someone can help me think about or solve.

I have really severe allergies plus really bad asthma and a lot of sinus issues. They all interact with each other (and also mess around with a little thing that begins with a c). On top of it I have high IgE levels (but I do not have APBA which is everyone's initial thought when I first see them, though I allergy test postive to all other molds). I've had several allergy tests (intradermal, RAST, etc.) over the last 5 years.

My problem is allergy medicine and nasal steroids are no longer helping. Some time ago we switched over to alcohol-free, scent-free nasal steroids. That solved the problem for a little bit but now I have a pardoxical reaction to the nasal steroids (read: nonstop sneezing for periods of several minutes). Also the allergy medicine is not helping (I take singular and a double dose of zyrtec). I also do sinus rinses with hypertonic saline. I've tried allergy shots with no noticeable difference. My dr will not prescribe xolair b/c of the high risk in my case for a reaction to it (and I think I'm fine with that). I am maxed out on asthma drugs. I've had all kinds of testing to make sure it's not some other disease.

I am having fairly frequent nose bleeds, bouts of non-stop sneezing, significant (post and regular) nasal drainage, and all the regular allergy symptoms (itchy eyes, wheezing). I do have some sinus scarring and the beginning of polyps but we are not ready to operate yet.

I have allergy proofed where I live. Hardwood floors, nothing in the bedroom besides the bed, real hepa filter air filters, hepa air filters on the a/c and heat, no mold damage, no pets, use mask if I clean, allergy covers, etc. I have these problems regardless of location (though they are worst outside).

I am very uncomfortable. It is affecting my quality of life, my ability to exercise (which I did manage to do until today) and breathe. Has anyone found a solution or way to improve quality of life? I need to get off of the double dose of zyrtec, in particular, because it dries me out but it's the only thing really helping me with asthma as a result of allergies and keeping hives under control.

Thanks for any help or advice!

 

[etabetac]

I'm sorry I ask for more help than I give. I'm having some issues I hope someone can help me think about or solve.

I have really severe allergies plus really bad asthma and a lot of sinus issues. They all interact with each other (and also mess around with a little thing that begins with a c). On top of it I have high IgE levels (but I do not have APBA which is everyone's initial thought when I first see them, though I allergy test postive to all other molds). I've had several allergy tests (intradermal, RAST, etc.) over the last 5 years.

My problem is allergy medicine and nasal steroids are no longer helping. Some time ago we switched over to alcohol-free, scent-free nasal steroids. That solved the problem for a little bit but now I have a pardoxical reaction to the nasal steroids (read: nonstop sneezing for periods of several minutes). Also the allergy medicine is not helping (I take singular and a double dose of zyrtec). I also do sinus rinses with hypertonic saline. I've tried allergy shots with no noticeable difference. My dr will not prescribe xolair b/c of the high risk in my case for a reaction to it (and I think I'm fine with that). I am maxed out on asthma drugs. I've had all kinds of testing to make sure it's not some other disease.

I am having fairly frequent nose bleeds, bouts of non-stop sneezing, significant (post and regular) nasal drainage, and all the regular allergy symptoms (itchy eyes, wheezing). I do have some sinus scarring and the beginning of polyps but we are not ready to operate yet.

I have allergy proofed where I live. Hardwood floors, nothing in the bedroom besides the bed, real hepa filter air filters, hepa air filters on the a/c and heat, no mold damage, no pets, use mask if I clean, allergy covers, etc. I have these problems regardless of location (though they are worst outside).

I am very uncomfortable. It is affecting my quality of life, my ability to exercise (which I did manage to do until today) and breathe. Has anyone found a solution or way to improve quality of life? I need to get off of the double dose of zyrtec, in particular, because it dries me out but it's the only thing really helping me with asthma as a result of allergies and keeping hives under control.

Thanks for any help or advice!

 

[mom2lillian]

seriously read my blog about xolair NOW, google it, read everything you can, ask me any questions, it is life altering. CF doc is unlikely to give it to you but get to an allergist who will, it WILL change your life.

 

[mom2lillian]

seriously read my blog about xolair NOW, google it, read everything you can, ask me any questions, it is life altering. CF doc is unlikely to give it to you but get to an allergist who will, it WILL change your life.

 

[mom2lillian]

seriously read my blog about xolair NOW, google it, read everything you can, ask me any questions, it is life altering. CF doc is unlikely to give it to you but get to an allergist who will, it WILL change your life.

 

[mom2lillian]

seriously read my blog about xolair NOW, google it, read everything you can, ask me any questions, it is life altering. CF doc is unlikely to give it to you but get to an allergist who will, it WILL change your life.

 

[mom2lillian]

seriously read my blog about xolair NOW, google it, read everything you can, ask me any questions, it is life altering. CF doc is unlikely to give it to you but get to an allergist who will, it WILL change your life.

 

[etabetac]

It was the allergist who wouldn't do it. CF dr agreed with allergist b/c I went to allergist as a consult to see if it would clear up an exacerbation I was having that lasted months. I had a second opinion from another allergist who agreed. I would like to do it I think. I've read everything available including some studies. Maybe I just need to push harder. I don't know if insurance will cover it either.

On a less serious note, poor hamster ovaries. Xolair is yet another drug that Chinese hamster ovaries were used in.

 

[etabetac]

It was the allergist who wouldn't do it. CF dr agreed with allergist b/c I went to allergist as a consult to see if it would clear up an exacerbation I was having that lasted months. I had a second opinion from another allergist who agreed. I would like to do it I think. I've read everything available including some studies. Maybe I just need to push harder. I don't know if insurance will cover it either.

On a less serious note, poor hamster ovaries. Xolair is yet another drug that Chinese hamster ovaries were used in.

 

[etabetac]

It was the allergist who wouldn't do it. CF dr agreed with allergist b/c I went to allergist as a consult to see if it would clear up an exacerbation I was having that lasted months. I had a second opinion from another allergist who agreed. I would like to do it I think. I've read everything available including some studies. Maybe I just need to push harder. I don't know if insurance will cover it either.

On a less serious note, poor hamster ovaries. Xolair is yet another drug that Chinese hamster ovaries were used in.

 

[etabetac]

It was the allergist who wouldn't do it. CF dr agreed with allergist b/c I went to allergist as a consult to see if it would clear up an exacerbation I was having that lasted months. I had a second opinion from another allergist who agreed. I would like to do it I think. I've read everything available including some studies. Maybe I just need to push harder. I don't know if insurance will cover it either.

On a less serious note, poor hamster ovaries. Xolair is yet another drug that Chinese hamster ovaries were used in.

 

[etabetac]

It was the allergist who wouldn't do it. CF dr agreed with allergist b/c I went to allergist as a consult to see if it would clear up an exacerbation I was having that lasted months. I had a second opinion from another allergist who agreed. I would like to do it I think. I've read everything available including some studies. Maybe I just need to push harder. I don't know if insurance will cover it either.

On a less serious note, poor hamster ovaries. Xolair is yet another drug that Chinese hamster ovaries were used in.

 

[mom2lillian]

yes, thank you to all the chinese hamspters all over the world LOL!

I can tell you the drug is TRULY miraculous for me and I wasnt even aware I was having issues I just wanted it to keep my ABPA in 'remission' which I had been in for 4+years.

My CF docs said no because it wasnt marketed to CFers yet, duh we meet all the requirements just because we have an additional issue should not invalidate that! I went back for a check up recently and was doing excellent and I told the doc (partner of the one that said no) I owed it to xolair yada yada and he said "Oh, did we start you on that" and I said NO and told him I went elsewhere etc. I could tell he was pondering it. I will mention it each and every time I am doing well because I know there are others at my clinic that can benefit from it as well. My cf nurse told me that my doc (also areas severe asthma specialist) gives it to slews of kids with asthma, they call him the King Xolair but not to cf'ers which infuriates me.

I am hoping they are starting studies soon, I read something I believe about ABPA but cant rmemeber.

It is insanely expensive so definately look into the insurance, even if they say no try to find someone to administer it and fight the company with letter saying why its necessary and showing how it could save money on other things etc. I have to get the shot every 2 weeks instead of every month because my ige is 350 before starting so for me it costs $2000 a month but if you were on the monthly dosing I believe it woudl be about 1/2 that.

Effects for me include, more open airways, no 'bad' days when its rainins, no post nasal drainage, no I cant go out its damp, no I cant go in forest its damp, less response to my allergens, and the most impressive is that overall I have WAY LESS mucous production on a daily basis (perhaps due to less inflammation), I would say at least 50 but closer to 75% less at least. That with excercise gave me the best PFT's I've ever had last year.

keep pushing, they arent always right!

 

[mom2lillian]

yes, thank you to all the chinese hamspters all over the world LOL!

I can tell you the drug is TRULY miraculous for me and I wasnt even aware I was having issues I just wanted it to keep my ABPA in 'remission' which I had been in for 4+years.

My CF docs said no because it wasnt marketed to CFers yet, duh we meet all the requirements just because we have an additional issue should not invalidate that! I went back for a check up recently and was doing excellent and I told the doc (partner of the one that said no) I owed it to xolair yada yada and he said "Oh, did we start you on that" and I said NO and told him I went elsewhere etc. I could tell he was pondering it. I will mention it each and every time I am doing well because I know there are others at my clinic that can benefit from it as well. My cf nurse told me that my doc (also areas severe asthma specialist) gives it to slews of kids with asthma, they call him the King Xolair but not to cf'ers which infuriates me.

I am hoping they are starting studies soon, I read something I believe about ABPA but cant rmemeber.

It is insanely expensive so definately look into the insurance, even if they say no try to find someone to administer it and fight the company with letter saying why its necessary and showing how it could save money on other things etc. I have to get the shot every 2 weeks instead of every month because my ige is 350 before starting so for me it costs $2000 a month but if you were on the monthly dosing I believe it woudl be about 1/2 that.

Effects for me include, more open airways, no 'bad' days when its rainins, no post nasal drainage, no I cant go out its damp, no I cant go in forest its damp, less response to my allergens, and the most impressive is that overall I have WAY LESS mucous production on a daily basis (perhaps due to less inflammation), I would say at least 50 but closer to 75% less at least. That with excercise gave me the best PFT's I've ever had last year.

keep pushing, they arent always right!

 

[mom2lillian]

yes, thank you to all the chinese hamspters all over the world LOL!

I can tell you the drug is TRULY miraculous for me and I wasnt even aware I was having issues I just wanted it to keep my ABPA in 'remission' which I had been in for 4+years.

My CF docs said no because it wasnt marketed to CFers yet, duh we meet all the requirements just because we have an additional issue should not invalidate that! I went back for a check up recently and was doing excellent and I told the doc (partner of the one that said no) I owed it to xolair yada yada and he said "Oh, did we start you on that" and I said NO and told him I went elsewhere etc. I could tell he was pondering it. I will mention it each and every time I am doing well because I know there are others at my clinic that can benefit from it as well. My cf nurse told me that my doc (also areas severe asthma specialist) gives it to slews of kids with asthma, they call him the King Xolair but not to cf'ers which infuriates me.

I am hoping they are starting studies soon, I read something I believe about ABPA but cant rmemeber.

It is insanely expensive so definately look into the insurance, even if they say no try to find someone to administer it and fight the company with letter saying why its necessary and showing how it could save money on other things etc. I have to get the shot every 2 weeks instead of every month because my ige is 350 before starting so for me it costs $2000 a month but if you were on the monthly dosing I believe it woudl be about 1/2 that.

Effects for me include, more open airways, no 'bad' days when its rainins, no post nasal drainage, no I cant go out its damp, no I cant go in forest its damp, less response to my allergens, and the most impressive is that overall I have WAY LESS mucous production on a daily basis (perhaps due to less inflammation), I would say at least 50 but closer to 75% less at least. That with excercise gave me the best PFT's I've ever had last year.

keep pushing, they arent always right!

 

[mom2lillian]

yes, thank you to all the chinese hamspters all over the world LOL!

I can tell you the drug is TRULY miraculous for me and I wasnt even aware I was having issues I just wanted it to keep my ABPA in 'remission' which I had been in for 4+years.

My CF docs said no because it wasnt marketed to CFers yet, duh we meet all the requirements just because we have an additional issue should not invalidate that! I went back for a check up recently and was doing excellent and I told the doc (partner of the one that said no) I owed it to xolair yada yada and he said "Oh, did we start you on that" and I said NO and told him I went elsewhere etc. I could tell he was pondering it. I will mention it each and every time I am doing well because I know there are others at my clinic that can benefit from it as well. My cf nurse told me that my doc (also areas severe asthma specialist) gives it to slews of kids with asthma, they call him the King Xolair but not to cf'ers which infuriates me.

I am hoping they are starting studies soon, I read something I believe about ABPA but cant rmemeber.

It is insanely expensive so definately look into the insurance, even if they say no try to find someone to administer it and fight the company with letter saying why its necessary and showing how it could save money on other things etc. I have to get the shot every 2 weeks instead of every month because my ige is 350 before starting so for me it costs $2000 a month but if you were on the monthly dosing I believe it woudl be about 1/2 that.

Effects for me include, more open airways, no 'bad' days when its rainins, no post nasal drainage, no I cant go out its damp, no I cant go in forest its damp, less response to my allergens, and the most impressive is that overall I have WAY LESS mucous production on a daily basis (perhaps due to less inflammation), I would say at least 50 but closer to 75% less at least. That with excercise gave me the best PFT's I've ever had last year.

keep pushing, they arent always right!

 

[mom2lillian]

yes, thank you to all the chinese hamspters all over the world LOL!

I can tell you the drug is TRULY miraculous for me and I wasnt even aware I was having issues I just wanted it to keep my ABPA in 'remission' which I had been in for 4+years.

My CF docs said no because it wasnt marketed to CFers yet, duh we meet all the requirements just because we have an additional issue should not invalidate that! I went back for a check up recently and was doing excellent and I told the doc (partner of the one that said no) I owed it to xolair yada yada and he said "Oh, did we start you on that" and I said NO and told him I went elsewhere etc. I could tell he was pondering it. I will mention it each and every time I am doing well because I know there are others at my clinic that can benefit from it as well. My cf nurse told me that my doc (also areas severe asthma specialist) gives it to slews of kids with asthma, they call him the King Xolair but not to cf'ers which infuriates me.

I am hoping they are starting studies soon, I read something I believe about ABPA but cant rmemeber.

It is insanely expensive so definately look into the insurance, even if they say no try to find someone to administer it and fight the company with letter saying why its necessary and showing how it could save money on other things etc. I have to get the shot every 2 weeks instead of every month because my ige is 350 before starting so for me it costs $2000 a month but if you were on the monthly dosing I believe it woudl be about 1/2 that.

Effects for me include, more open airways, no 'bad' days when its rainins, no post nasal drainage, no I cant go out its damp, no I cant go in forest its damp, less response to my allergens, and the most impressive is that overall I have WAY LESS mucous production on a daily basis (perhaps due to less inflammation), I would say at least 50 but closer to 75% less at least. That with excercise gave me the best PFT's I've ever had last year.

keep pushing, they arent always right!