Frustrated and sad

T

tammykrumrey

Guest
I am just so frustrated! I feel like Kayla will never get off Prednisone<img src="i/expressions/face-icon-small-sad.gif" border="0"> She has been on it now since the middle of October, as well as VFend, for ABPA. And although her FEV has come back to baseline, she obviously isn't coming off of either one of the meds any time soon. After two months, her ige levels were checked, and not only did they not improve, they went up! That was a month ago. If she misses just one dose of her Vfend, she feels awful.

Can we ever get rid of ABPA?!? How long can she safely stay on Prednisone? She is on 15mg every other day. I am just sad that it seems like she is dependent on them <img src="i/expressions/face-icon-small-sad.gif" border="0">

She is feeling just cruddy right now. She really can't pinpoint what feels so bad, besides an increase in cough. She says her whole body just hurts. Can that be because of the prednisone? She has been on Cayston for a month...

Any input would be so helpful. I am just discouraged<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
I am just so frustrated! I feel like Kayla will never get off Prednisone<img src="i/expressions/face-icon-small-sad.gif" border="0"> She has been on it now since the middle of October, as well as VFend, for ABPA. And although her FEV has come back to baseline, she obviously isn't coming off of either one of the meds any time soon. After two months, her ige levels were checked, and not only did they not improve, they went up! That was a month ago. If she misses just one dose of her Vfend, she feels awful.

Can we ever get rid of ABPA?!? How long can she safely stay on Prednisone? She is on 15mg every other day. I am just sad that it seems like she is dependent on them <img src="i/expressions/face-icon-small-sad.gif" border="0">

She is feeling just cruddy right now. She really can't pinpoint what feels so bad, besides an increase in cough. She says her whole body just hurts. Can that be because of the prednisone? She has been on Cayston for a month...

Any input would be so helpful. I am just discouraged<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
T

tammykrumrey

Guest
I am just so frustrated! I feel like Kayla will never get off Prednisone<img src="i/expressions/face-icon-small-sad.gif" border="0"> She has been on it now since the middle of October, as well as VFend, for ABPA. And although her FEV has come back to baseline, she obviously isn't coming off of either one of the meds any time soon. After two months, her ige levels were checked, and not only did they not improve, they went up! That was a month ago. If she misses just one dose of her Vfend, she feels awful.
<br />
<br />Can we ever get rid of ABPA?!? How long can she safely stay on Prednisone? She is on 15mg every other day. I am just sad that it seems like she is dependent on them <img src="i/expressions/face-icon-small-sad.gif" border="0">
<br />
<br />She is feeling just cruddy right now. She really can't pinpoint what feels so bad, besides an increase in cough. She says her whole body just hurts. Can that be because of the prednisone? She has been on Cayston for a month...
<br />
<br />Any input would be so helpful. I am just discouraged<img src="i/expressions/face-icon-small-sad.gif" border="0">
 
L

LouLou

New member
Add'lly I'd get a rec from your friends and community for a good allergist. You can ask the cf doc but don't be surprised if he/she poo-poos the request. A trial of Xolair might be in order. This will require monthly visits hence the rec for a local allergist. Xolair WILL lower the igE level but will this solve K's problems who knows until she tries.
 
L

LouLou

New member
Add'lly I'd get a rec from your friends and community for a good allergist. You can ask the cf doc but don't be surprised if he/she poo-poos the request. A trial of Xolair might be in order. This will require monthly visits hence the rec for a local allergist. Xolair WILL lower the igE level but will this solve K's problems who knows until she tries.
 
L

LouLou

New member
Add'lly I'd get a rec from your friends and community for a good allergist. You can ask the cf doc but don't be surprised if he/she poo-poos the request. A trial of Xolair might be in order. This will require monthly visits hence the rec for a local allergist. Xolair WILL lower the igE level but will this solve K's problems who knows until she tries.
 
L

LouLou

New member
Extended Vfend and pred use don't come without their own list of side effects so it's worth a shot adding something else or changing up the routine if it isn't working. Good luck!
 
L

LouLou

New member
Extended Vfend and pred use don't come without their own list of side effects so it's worth a shot adding something else or changing up the routine if it isn't working. Good luck!
 
L

LouLou

New member
Extended Vfend and pred use don't come without their own list of side effects so it's worth a shot adding something else or changing up the routine if it isn't working. Good luck!
 
R

Rebjane

Super Moderator
I don't have any advice to give but I understand your frustration. Keep us updated on how things turn out.
 
R

Rebjane

Super Moderator
I don't have any advice to give but I understand your frustration. Keep us updated on how things turn out.
 
R

Rebjane

Super Moderator
I don't have any advice to give but I understand your frustration. Keep us updated on how things turn out.
 
J

JennifersHope

New member
I was on both of them, I will never be able to come off steroids for my addison's disease. When I took the V Fend I felt sick most of the time, The lights looked like green shadows, and my body ached. I am sorry about the Prednisone and news.

Sending love
 
J

JennifersHope

New member
I was on both of them, I will never be able to come off steroids for my addison's disease. When I took the V Fend I felt sick most of the time, The lights looked like green shadows, and my body ached. I am sorry about the Prednisone and news.

Sending love
 
J

JennifersHope

New member
I was on both of them, I will never be able to come off steroids for my addison's disease. When I took the V Fend I felt sick most of the time, The lights looked like green shadows, and my body ached. I am sorry about the Prednisone and news.
<br />
<br />Sending love
 
M

mamaScarlett

Active member
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.
I'm not familiar with VFend, so I can't really comment on that.

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.
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.
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.
Push for answers and push for appointments to talk.
 
M

mamaScarlett

Active member
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.
I'm not familiar with VFend, so I can't really comment on that.

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.
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.
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.
Push for answers and push for appointments to talk.
 
You must log in or register to reply here.
Top