CF and asthma

A

amber682

New member
Last summer my son was put on QVAR (beclamethasone) 80 mcg because the doctor at clinic said he may have asthma. How would a doctor decide if a CF patient has asthma as well? Just by wheezing and stuff? He was sick when he was first put on it, and ended up going on 2 weeks of IV's. (Some of you may remember me posting about all of this last summer.)

Last clinic visit, at our new clinic, I asked if this is something they're going to keep him on forever, because he was put on it while sick, and has no cough or wheezing. The doctor said yes, because the last doctor said he may have "a touch of asthma". I guess it just concerns me that he may be on a med he doesn't need, especially a corticosteroid, and it's not even approved for children under age 5 (Vinny is 2).

What do you think, should I be pushing these doctors? I have researched this med quite a bit, and have thoroughly read and re-read the package inserts. I know it inhibits inflammatory cells, but he doesn't have an infection or wheeze or cough. The highest recommended dose for a 5-17 year old child is 80 mcg twice a day. They have him on 240 twice a day. I understand he has CF, not just asthma, but this seems like overkill to me, but not the doctor. And we use a spacer, so it's not like half of it is going to waste.

Am I over-reacting here because my gut is telling me to go in there at our next visit this week and get them to wean him off ar atleast lower the dosage. Sorry so long!
 
A

amber682

New member
Last summer my son was put on QVAR (beclamethasone) 80 mcg because the doctor at clinic said he may have asthma. How would a doctor decide if a CF patient has asthma as well? Just by wheezing and stuff? He was sick when he was first put on it, and ended up going on 2 weeks of IV's. (Some of you may remember me posting about all of this last summer.)

Last clinic visit, at our new clinic, I asked if this is something they're going to keep him on forever, because he was put on it while sick, and has no cough or wheezing. The doctor said yes, because the last doctor said he may have "a touch of asthma". I guess it just concerns me that he may be on a med he doesn't need, especially a corticosteroid, and it's not even approved for children under age 5 (Vinny is 2).

What do you think, should I be pushing these doctors? I have researched this med quite a bit, and have thoroughly read and re-read the package inserts. I know it inhibits inflammatory cells, but he doesn't have an infection or wheeze or cough. The highest recommended dose for a 5-17 year old child is 80 mcg twice a day. They have him on 240 twice a day. I understand he has CF, not just asthma, but this seems like overkill to me, but not the doctor. And we use a spacer, so it's not like half of it is going to waste.

Am I over-reacting here because my gut is telling me to go in there at our next visit this week and get them to wean him off ar atleast lower the dosage. Sorry so long!
 
A

amber682

New member
Last summer my son was put on QVAR (beclamethasone) 80 mcg because the doctor at clinic said he may have asthma. How would a doctor decide if a CF patient has asthma as well? Just by wheezing and stuff? He was sick when he was first put on it, and ended up going on 2 weeks of IV's. (Some of you may remember me posting about all of this last summer.)

Last clinic visit, at our new clinic, I asked if this is something they're going to keep him on forever, because he was put on it while sick, and has no cough or wheezing. The doctor said yes, because the last doctor said he may have "a touch of asthma". I guess it just concerns me that he may be on a med he doesn't need, especially a corticosteroid, and it's not even approved for children under age 5 (Vinny is 2).

What do you think, should I be pushing these doctors? I have researched this med quite a bit, and have thoroughly read and re-read the package inserts. I know it inhibits inflammatory cells, but he doesn't have an infection or wheeze or cough. The highest recommended dose for a 5-17 year old child is 80 mcg twice a day. They have him on 240 twice a day. I understand he has CF, not just asthma, but this seems like overkill to me, but not the doctor. And we use a spacer, so it's not like half of it is going to waste.

Am I over-reacting here because my gut is telling me to go in there at our next visit this week and get them to wean him off ar atleast lower the dosage. Sorry so long!
 
L

lightNlife

New member
I'm on asthma meds, have been for 14 years now. I'm on Advair, and Singulair.

I understand your concern about having your little one on QVAR. But don't worry. From what I've learned about steroids, they are SAFE in a child of that age. In fact, the reason the doc probably prescribed it is because it will enable your kid to have better lung volume in the long run. If you were to stop it now, any effects of asthma would impair his lung function. The idea with prescribing asthma meds for people with CF, is that those drugs can help stave of decreasing in lung capacity. The longer we can do that, the better chance we have of keeping that FEV1 up as high as possible for as long as possible.

It has been my experience that anything that helps reduce inflammation of the airways (i.e. asthma meds) can boost the efficiency of my CF specific drugs. After all, if I didn't have bronchodilators to open up the airways, no amount of coughing I would do would be effective.

Asthma is a tightening of the airways, particularly in response to allergens or airborne pathogens. Usually it's characterized by wheezing. Sometimes in patients with CF and asthma, no wheezing is heard because the mucus in the airways is so sticky that air cannot pass through with enough force to cause a vibration producing sound waves (i.e. wheezing.)

As with most things involving the lungs and CF, prevention is of utmost importance. Although you may be hesitant to keep your kid on any form of a steroid, I don't think it sounds like an unreasonable amount of "overkill" as you said. It would be more problematic to not use it. Constricted airways will cause the oxygen saturation to drop. That's something you don't want.

You may get lucky and your kid may outgrow the asthma. If he does, then the steroids will have done their job to help keep the lung capacity high.

I hope that helps. Be sure to talk to your doctor about your concerns. I'm sure he can explain it better than I can.
 
L

lightNlife

New member
I'm on asthma meds, have been for 14 years now. I'm on Advair, and Singulair.

I understand your concern about having your little one on QVAR. But don't worry. From what I've learned about steroids, they are SAFE in a child of that age. In fact, the reason the doc probably prescribed it is because it will enable your kid to have better lung volume in the long run. If you were to stop it now, any effects of asthma would impair his lung function. The idea with prescribing asthma meds for people with CF, is that those drugs can help stave of decreasing in lung capacity. The longer we can do that, the better chance we have of keeping that FEV1 up as high as possible for as long as possible.

It has been my experience that anything that helps reduce inflammation of the airways (i.e. asthma meds) can boost the efficiency of my CF specific drugs. After all, if I didn't have bronchodilators to open up the airways, no amount of coughing I would do would be effective.

Asthma is a tightening of the airways, particularly in response to allergens or airborne pathogens. Usually it's characterized by wheezing. Sometimes in patients with CF and asthma, no wheezing is heard because the mucus in the airways is so sticky that air cannot pass through with enough force to cause a vibration producing sound waves (i.e. wheezing.)

As with most things involving the lungs and CF, prevention is of utmost importance. Although you may be hesitant to keep your kid on any form of a steroid, I don't think it sounds like an unreasonable amount of "overkill" as you said. It would be more problematic to not use it. Constricted airways will cause the oxygen saturation to drop. That's something you don't want.

You may get lucky and your kid may outgrow the asthma. If he does, then the steroids will have done their job to help keep the lung capacity high.

I hope that helps. Be sure to talk to your doctor about your concerns. I'm sure he can explain it better than I can.
 
L

lightNlife

New member
I'm on asthma meds, have been for 14 years now. I'm on Advair, and Singulair.

I understand your concern about having your little one on QVAR. But don't worry. From what I've learned about steroids, they are SAFE in a child of that age. In fact, the reason the doc probably prescribed it is because it will enable your kid to have better lung volume in the long run. If you were to stop it now, any effects of asthma would impair his lung function. The idea with prescribing asthma meds for people with CF, is that those drugs can help stave of decreasing in lung capacity. The longer we can do that, the better chance we have of keeping that FEV1 up as high as possible for as long as possible.

It has been my experience that anything that helps reduce inflammation of the airways (i.e. asthma meds) can boost the efficiency of my CF specific drugs. After all, if I didn't have bronchodilators to open up the airways, no amount of coughing I would do would be effective.

Asthma is a tightening of the airways, particularly in response to allergens or airborne pathogens. Usually it's characterized by wheezing. Sometimes in patients with CF and asthma, no wheezing is heard because the mucus in the airways is so sticky that air cannot pass through with enough force to cause a vibration producing sound waves (i.e. wheezing.)

As with most things involving the lungs and CF, prevention is of utmost importance. Although you may be hesitant to keep your kid on any form of a steroid, I don't think it sounds like an unreasonable amount of "overkill" as you said. It would be more problematic to not use it. Constricted airways will cause the oxygen saturation to drop. That's something you don't want.

You may get lucky and your kid may outgrow the asthma. If he does, then the steroids will have done their job to help keep the lung capacity high.

I hope that helps. Be sure to talk to your doctor about your concerns. I'm sure he can explain it better than I can.
 
A

amber682

New member
Thank you. I can understand why it would be beneficial. Do you know if it's common to be on such a high dosage, since it's for CF and asthma, not just asthma?
 
A

amber682

New member
Thank you. I can understand why it would be beneficial. Do you know if it's common to be on such a high dosage, since it's for CF and asthma, not just asthma?
 
A

amber682

New member
Thank you. I can understand why it would be beneficial. Do you know if it's common to be on such a high dosage, since it's for CF and asthma, not just asthma?
 
W

wuffles

New member
I take Symbicort (200/6) and Bricanyl. Personally, my asthma is more of a day-to-day hassle than CF most of the time. If I skip dosages of my preventative inhaler, or forget to take my reliever before I play sport, I really know about it. I'm not sure how you'd really tell how a young child has asthma, but I guess that's the doctor's job, not mine <img src="i/expressions/face-icon-small-tongue.gif" border="0">

If you are worried, could you ask the doc for the reasons he thinks Vinny has asthma? I would just say discuss it with the doc, most would be happy to lower the dosage and monitor how he goes from there.
 
W

wuffles

New member
I take Symbicort (200/6) and Bricanyl. Personally, my asthma is more of a day-to-day hassle than CF most of the time. If I skip dosages of my preventative inhaler, or forget to take my reliever before I play sport, I really know about it. I'm not sure how you'd really tell how a young child has asthma, but I guess that's the doctor's job, not mine <img src="i/expressions/face-icon-small-tongue.gif" border="0">

If you are worried, could you ask the doc for the reasons he thinks Vinny has asthma? I would just say discuss it with the doc, most would be happy to lower the dosage and monitor how he goes from there.
 
W

wuffles

New member
I take Symbicort (200/6) and Bricanyl. Personally, my asthma is more of a day-to-day hassle than CF most of the time. If I skip dosages of my preventative inhaler, or forget to take my reliever before I play sport, I really know about it. I'm not sure how you'd really tell how a young child has asthma, but I guess that's the doctor's job, not mine <img src="i/expressions/face-icon-small-tongue.gif" border="0">

If you are worried, could you ask the doc for the reasons he thinks Vinny has asthma? I would just say discuss it with the doc, most would be happy to lower the dosage and monitor how he goes from there.
 
M

mom2lillian

New member
I would say most cf'ers should be treated for asthma since IMO the cost benefit analysis is in our favor. I would ensure that you have read the dosing info correctly and then take that concern directly to the doc. Is there the potential for a 2nd opinion?

Perhaps your doc could allow you to try adjusting the dosage and use a peak flow take 2x daily readings over a period of tiem to see the effect? I take advair 250/50 for a while they had me on the lower dose and I wo udl still occasionally get the 'asthma bark' cough so they upped it to 250/50 then I was having some issues and they tried me on 500 but it was too much for me so we have played with it and found 250 with albuterol when needed is best.
 
M

mom2lillian

New member
I would say most cf'ers should be treated for asthma since IMO the cost benefit analysis is in our favor. I would ensure that you have read the dosing info correctly and then take that concern directly to the doc. Is there the potential for a 2nd opinion?

Perhaps your doc could allow you to try adjusting the dosage and use a peak flow take 2x daily readings over a period of tiem to see the effect? I take advair 250/50 for a while they had me on the lower dose and I wo udl still occasionally get the 'asthma bark' cough so they upped it to 250/50 then I was having some issues and they tried me on 500 but it was too much for me so we have played with it and found 250 with albuterol when needed is best.
 
M

mom2lillian

New member
I would say most cf'ers should be treated for asthma since IMO the cost benefit analysis is in our favor. I would ensure that you have read the dosing info correctly and then take that concern directly to the doc. Is there the potential for a 2nd opinion?

Perhaps your doc could allow you to try adjusting the dosage and use a peak flow take 2x daily readings over a period of tiem to see the effect? I take advair 250/50 for a while they had me on the lower dose and I wo udl still occasionally get the 'asthma bark' cough so they upped it to 250/50 then I was having some issues and they tried me on 500 but it was too much for me so we have played with it and found 250 with albuterol when needed is best.
 
J

JazzysMom

New member
I have the Asmtha coponent with my CF. If my Asmtha is kicking in then I will be guaranteed problems with my CF. If my airways close down then there is no way for the sputum to come up. My airways are extremely sensitive. I use albeuterol & pulmicort via neb and advair 250/50 twice daily. My doctor has mentioned cutting the pulmicort out a few times since I am using the advair, but I am scared to do that. WHat I do now I know how it works......I dont want to risk changing it! The actual amount you speak of I am not sure about and I think you should question the dose, but the need for the need for the med itself I dont think is too far off. If in doubt ask the doctor why~~~
 
J

JazzysMom

New member
I have the Asmtha coponent with my CF. If my Asmtha is kicking in then I will be guaranteed problems with my CF. If my airways close down then there is no way for the sputum to come up. My airways are extremely sensitive. I use albeuterol & pulmicort via neb and advair 250/50 twice daily. My doctor has mentioned cutting the pulmicort out a few times since I am using the advair, but I am scared to do that. WHat I do now I know how it works......I dont want to risk changing it! The actual amount you speak of I am not sure about and I think you should question the dose, but the need for the need for the med itself I dont think is too far off. If in doubt ask the doctor why~~~
 
J

JazzysMom

New member
I have the Asmtha coponent with my CF. If my Asmtha is kicking in then I will be guaranteed problems with my CF. If my airways close down then there is no way for the sputum to come up. My airways are extremely sensitive. I use albeuterol & pulmicort via neb and advair 250/50 twice daily. My doctor has mentioned cutting the pulmicort out a few times since I am using the advair, but I am scared to do that. WHat I do now I know how it works......I dont want to risk changing it! The actual amount you speak of I am not sure about and I think you should question the dose, but the need for the need for the med itself I dont think is too far off. If in doubt ask the doctor why~~~
 
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