Frustrated and sad

[mamaScarlett]

Its possible that her crummy feeling isn't tied to the Prednisone per se. yes, that drug sucks-but 15 mgs isn't <i>that</i> high of a dose. Of course it affects everyone differently. I do not think her body aches are connected to the pred. I've had tons of horrible symptoms with pred, but that was at doses of 50-60mgs by IV, and body aches wasn't one of them.
<br />I'm not familiar with VFend, so I can't really comment on that.
<br />
<br />I can relate to how you feel and to your frustration. No one wants to live on steroids. I second the idea to #1 call the doc and #2 speak with an allergist.
<br />In my experience, sometimes the pediatric cf docs want to handle it all (lung, GI, allergy, skin, etc) but sometimes thinking outside the box helps. Talking to an allergist certainly won't hurt and might be the answer to your prayers.
<br />If her pfts are back to baseline and she's still feeling this way then you need to look in another direction. Moms know in their gut when something isn't right.
<br />Push for answers and push for appointments to talk.

 

[phutton]

I can relate to your frustrations! I was on the same rollercoaster of prednisone and anitfungals for years. I am allergic to the oral antifungals and just refused to do steroids. I couldn't do it anymore!

So my dr just started me on inhaled amphotericin b and xolair. I feel so much better, it has only been 2 months, but amazing difference. According to my allergist, it is common practice for Aspergillus.

Amphotercin is an inhaled antifungal. It gets directly to the lung w/o liver toxity. The DR said we are on unchartered territory, but they use pre/post transplants.

Pepsi

 

[phutton]

I can relate to your frustrations! I was on the same rollercoaster of prednisone and anitfungals for years. I am allergic to the oral antifungals and just refused to do steroids. I couldn't do it anymore!

So my dr just started me on inhaled amphotericin b and xolair. I feel so much better, it has only been 2 months, but amazing difference. According to my allergist, it is common practice for Aspergillus.

Amphotercin is an inhaled antifungal. It gets directly to the lung w/o liver toxity. The DR said we are on unchartered territory, but they use pre/post transplants.

Pepsi

 

[phutton]

I can relate to your frustrations! I was on the same rollercoaster of prednisone and anitfungals for years. I am allergic to the oral antifungals and just refused to do steroids. I couldn't do it anymore!
<br />
<br />So my dr just started me on inhaled amphotericin b and xolair. I feel so much better, it has only been 2 months, but amazing difference. According to my allergist, it is common practice for Aspergillus.
<br />
<br />Amphotercin is an inhaled antifungal. It gets directly to the lung w/o liver toxity. The DR said we are on unchartered territory, but they use pre/post transplants.
<br />
<br />Pepsi

 

[tammykrumrey]

Thanks for the input! I had called clinic yesterday morning, and her doctor put her on Bactrim and Levaquin. She has an appt. next Friday and we will see how she is doing then.

I am not thrilled about Levaquin after reading the drug info that comes with the Rx. I have refused to put her on it before, but I guess we will try it this time. She plays club volleyball and I am very worried about the risk of tearing muscles. But her clinic says that Cipro has the same risks, and she has been on that dozens of times with no problems...

Not only does she have ABPA issues, but has cultured MAC several times over the past year (never treated for it) and B. Multivorans and PA and MRSA. So manybe it is something else causing her to feel poorly.

Thanks again for the suggestions! I will take them with me next Friday to her appt!

 

[tammykrumrey]

Thanks for the input! I had called clinic yesterday morning, and her doctor put her on Bactrim and Levaquin. She has an appt. next Friday and we will see how she is doing then.

I am not thrilled about Levaquin after reading the drug info that comes with the Rx. I have refused to put her on it before, but I guess we will try it this time. She plays club volleyball and I am very worried about the risk of tearing muscles. But her clinic says that Cipro has the same risks, and she has been on that dozens of times with no problems...

Not only does she have ABPA issues, but has cultured MAC several times over the past year (never treated for it) and B. Multivorans and PA and MRSA. So manybe it is something else causing her to feel poorly.

Thanks again for the suggestions! I will take them with me next Friday to her appt!

 

[tammykrumrey]

Thanks for the input! I had called clinic yesterday morning, and her doctor put her on Bactrim and Levaquin. She has an appt. next Friday and we will see how she is doing then.
<br />
<br />I am not thrilled about Levaquin after reading the drug info that comes with the Rx. I have refused to put her on it before, but I guess we will try it this time. She plays club volleyball and I am very worried about the risk of tearing muscles. But her clinic says that Cipro has the same risks, and she has been on that dozens of times with no problems...
<br />
<br />Not only does she have ABPA issues, but has cultured MAC several times over the past year (never treated for it) and B. Multivorans and PA and MRSA. So manybe it is something else causing her to feel poorly.
<br />
<br />Thanks again for the suggestions! I will take them with me next Friday to her appt!

 

[KingJames]

The dosage which you mentioned isn't too bad, but my mother refused to allow my doctor to keep me on steroids for more than five or six days when I was a kid, and I still stay away from it. In the long-run, it can cause liver and vision damage. However, I do understand if your child needs it. Out of curiosity, did the albuterol/cromolyn nebulizer not work sufficiently (As a kid, I usually did the nebulizer twice a day)? In my personal opinion, I would only use steroids as a very last resort.

Also, with regard to Levaquin, the muscle issue is only present in a certain percentage of people. I fortunately never had any of those issues, and I played sports all the time. Levaquin was something only prescribed to me when I needed an extra kick to kill off a bacterial infection (Usually upper respiratory).

 

[KingJames]

The dosage which you mentioned isn't too bad, but my mother refused to allow my doctor to keep me on steroids for more than five or six days when I was a kid, and I still stay away from it. In the long-run, it can cause liver and vision damage. However, I do understand if your child needs it. Out of curiosity, did the albuterol/cromolyn nebulizer not work sufficiently (As a kid, I usually did the nebulizer twice a day)? In my personal opinion, I would only use steroids as a very last resort.

Also, with regard to Levaquin, the muscle issue is only present in a certain percentage of people. I fortunately never had any of those issues, and I played sports all the time. Levaquin was something only prescribed to me when I needed an extra kick to kill off a bacterial infection (Usually upper respiratory).

 

[KingJames]

The dosage which you mentioned isn't too bad, but my mother refused to allow my doctor to keep me on steroids for more than five or six days when I was a kid, and I still stay away from it. In the long-run, it can cause liver and vision damage. However, I do understand if your child needs it. Out of curiosity, did the albuterol/cromolyn nebulizer not work sufficiently (As a kid, I usually did the nebulizer twice a day)? In my personal opinion, I would only use steroids as a very last resort.
<br />
<br />Also, with regard to Levaquin, the muscle issue is only present in a certain percentage of people. I fortunately never had any of those issues, and I played sports all the time. Levaquin was something only prescribed to me when I needed an extra kick to kill off a bacterial infection (Usually upper respiratory).

 

[tammykrumrey]

KingJames: She does Albuterol three times a day with her Cayston. My major concern with the Levaquin is that her risks of muscle problems was increased because of the usage of prednisone. There were three factors that increased this risk, and that was one, and being over 60 and something else, just can't remember. I may not had really thought too much of it if it wasn't for her being on prednisone.

Thanks for the input!!

 

[tammykrumrey]

KingJames: She does Albuterol three times a day with her Cayston. My major concern with the Levaquin is that her risks of muscle problems was increased because of the usage of prednisone. There were three factors that increased this risk, and that was one, and being over 60 and something else, just can't remember. I may not had really thought too much of it if it wasn't for her being on prednisone.

Thanks for the input!!

 

[tammykrumrey]

KingJames: She does Albuterol three times a day with her Cayston. My major concern with the Levaquin is that her risks of muscle problems was increased because of the usage of prednisone. There were three factors that increased this risk, and that was one, and being over 60 and something else, just can't remember. I may not had really thought too much of it if it wasn't for her being on prednisone.
<br />
<br />Thanks for the input!!

 

[Lex]

Post transplant patients (like me) are on pred for life. So, while others have said it affects each of us differently, there's no end point for me. As a result of the side effects, I was on insulin for over a year. I'm currently on 7.5 mgs/day for life. Low dose, but never lower at this point.

Levaquin can be brutal. I tolerate ABX very well and this was the only exception. Make sure her achillis tendon doesn't become sore after a couple days. When I reported that to my doc, she said, "stop immediately."

Good luck!

 

[Lex]

Post transplant patients (like me) are on pred for life. So, while others have said it affects each of us differently, there's no end point for me. As a result of the side effects, I was on insulin for over a year. I'm currently on 7.5 mgs/day for life. Low dose, but never lower at this point.

Levaquin can be brutal. I tolerate ABX very well and this was the only exception. Make sure her achillis tendon doesn't become sore after a couple days. When I reported that to my doc, she said, "stop immediately."

Good luck!

 

[Lex]

Post transplant patients (like me) are on pred for life. So, while others have said it affects each of us differently, there's no end point for me. As a result of the side effects, I was on insulin for over a year. I'm currently on 7.5 mgs/day for life. Low dose, but never lower at this point.
<br />
<br />Levaquin can be brutal. I tolerate ABX very well and this was the only exception. Make sure her achillis tendon doesn't become sore after a couple days. When I reported that to my doc, she said, "stop immediately."
<br />
<br />Good luck!