Amphotericin

[UNCLoveCF]

<P>I would like to hear from anyone who has used inhaled and or intravenous (IV) form of Amphotericin. My CF doctor believes my hemoptysis episodes are caused by invasive aspergillosis, and I have not been able to take Azole antifungals due to side effects. </P>
<P> </P>
<P>I have not had a transplant. Therefore, if anyone has taken Amphotericin with CF lungs, I would like to hear from you as well. </P>
<P> </P>
<P>I would like to know what side effects you have experienced, how long it took for the treatment to work, if you felt better after taking Amphotericin and any advice or personal experience with the medication. </P>
<P> </P>
<P> </P>

 

[UNCLoveCF]

<P>I would like to hear from anyone who has used inhaled and or intravenous (IV) form of Amphotericin. My CF doctor believes my hemoptysis episodes are caused by invasive aspergillosis, and I have not been able to take Azole antifungals due to side effects. </P>
<P></P>
<P>I have not had a transplant. Therefore, if anyone has taken Amphotericin with CF lungs, I would like to hear from you as well. </P>
<P></P>
<P>I would like to know what side effects you have experienced, how long it took for the treatment to work, if you felt better after taking Amphotericin and any advice or personal experience with the medication. </P>
<P></P>
<P></P>

 

[UNCLoveCF]

<P><BR>I would like to hear from anyone who has used inhaled and or intravenous (IV) form of Amphotericin. My CF doctor believes my hemoptysis episodes are caused by invasive aspergillosis, and I have not been able to take Azole antifungals due to side effects. </P>
<P></P>
<P>I have not had a transplant. Therefore, if anyone has taken Amphotericin with CF lungs, I would like to hear from you as well. </P>
<P></P>
<P>I would like to know what side effects you have experienced, how long it took for the treatment to work, if you felt better after taking Amphotericin and any advice or personal experience with the medication. </P>
<P></P>
<P></P>

 

[carmenNZ]

Hi, I'm from New Zealand and have used Amphotericin a few times before.

I started growing a black fungus in my lungs around ten years ago and was told by the doctor at the time that it was just a harmless black mould. Turns out it wasn't that harmless. Anyway, to cut a long story short my lung function was slowly decreasing and antibiotics weren't really working so I was started on IV amphotericin when I was 15 and ended up being on it for about 6 weeks the first time. After a couple of weeks I started feeling really nauseous and from the bloods it looked like my kidneys were taking a bit of a hit. Therefore, I was switched to the liposomal amphotericin which isn't as harsh but costs way way more (hence why they always try their hardest to keep me on the harsher stuff, that's the NZ health system for you).

After 6 weeks of IVs I was sent home to nebulise the amphotericin for a few more weeks. Since then I have used IV amphotericin about 3 times (I'm 24 now) for at the very least 2 weeks, and it has always been followed up with a few more weeks of it being nebulised. I usually find it is quite a long and slow process and I didn't really see results for a few weeks, and it took even longer to get back to where I was. Also, when I was on the IV amphotericin the doctors had to watch my potassium levels very closely as it depletes you of potassium. But to finally have something work after antibiotics failed was great. It's just hard to think of that when you are having it!

So if you decide to use it make sure they check your kidney function and potassium levels lots. I tend to be complicated and I actually reacted to the Amphotericin so they have to infuse it really slowly and dilute it a lot. Whenever I have it it usually has to go in over about four hours <img src="i/expressions/face-icon-small-sad.gif" border="0">. The amphotericin we use here has to be mixed with 5% dextrose in water and as it is sensitive to the light the bag should be covered.

I hope this has helped and not scared you!

Carmen

 

[carmenNZ]

Hi, I'm from New Zealand and have used Amphotericin a few times before.

I started growing a black fungus in my lungs around ten years ago and was told by the doctor at the time that it was just a harmless black mould. Turns out it wasn't that harmless. Anyway, to cut a long story short my lung function was slowly decreasing and antibiotics weren't really working so I was started on IV amphotericin when I was 15 and ended up being on it for about 6 weeks the first time. After a couple of weeks I started feeling really nauseous and from the bloods it looked like my kidneys were taking a bit of a hit. Therefore, I was switched to the liposomal amphotericin which isn't as harsh but costs way way more (hence why they always try their hardest to keep me on the harsher stuff, that's the NZ health system for you).

After 6 weeks of IVs I was sent home to nebulise the amphotericin for a few more weeks. Since then I have used IV amphotericin about 3 times (I'm 24 now) for at the very least 2 weeks, and it has always been followed up with a few more weeks of it being nebulised. I usually find it is quite a long and slow process and I didn't really see results for a few weeks, and it took even longer to get back to where I was. Also, when I was on the IV amphotericin the doctors had to watch my potassium levels very closely as it depletes you of potassium. But to finally have something work after antibiotics failed was great. It's just hard to think of that when you are having it!

So if you decide to use it make sure they check your kidney function and potassium levels lots. I tend to be complicated and I actually reacted to the Amphotericin so they have to infuse it really slowly and dilute it a lot. Whenever I have it it usually has to go in over about four hours <img src="i/expressions/face-icon-small-sad.gif" border="0">. The amphotericin we use here has to be mixed with 5% dextrose in water and as it is sensitive to the light the bag should be covered.

I hope this has helped and not scared you!

Carmen

 

[carmenNZ]

Hi, I'm from New Zealand and have used Amphotericin a few times before.
<br />
<br />I started growing a black fungus in my lungs around ten years ago and was told by the doctor at the time that it was just a harmless black mould. Turns out it wasn't that harmless. Anyway, to cut a long story short my lung function was slowly decreasing and antibiotics weren't really working so I was started on IV amphotericin when I was 15 and ended up being on it for about 6 weeks the first time. After a couple of weeks I started feeling really nauseous and from the bloods it looked like my kidneys were taking a bit of a hit. Therefore, I was switched to the liposomal amphotericin which isn't as harsh but costs way way more (hence why they always try their hardest to keep me on the harsher stuff, that's the NZ health system for you).
<br />
<br />After 6 weeks of IVs I was sent home to nebulise the amphotericin for a few more weeks. Since then I have used IV amphotericin about 3 times (I'm 24 now) for at the very least 2 weeks, and it has always been followed up with a few more weeks of it being nebulised. I usually find it is quite a long and slow process and I didn't really see results for a few weeks, and it took even longer to get back to where I was. Also, when I was on the IV amphotericin the doctors had to watch my potassium levels very closely as it depletes you of potassium. But to finally have something work after antibiotics failed was great. It's just hard to think of that when you are having it!
<br />
<br />So if you decide to use it make sure they check your kidney function and potassium levels lots. I tend to be complicated and I actually reacted to the Amphotericin so they have to infuse it really slowly and dilute it a lot. Whenever I have it it usually has to go in over about four hours <img src="i/expressions/face-icon-small-sad.gif" border="0">. The amphotericin we use here has to be mixed with 5% dextrose in water and as it is sensitive to the light the bag should be covered.
<br />
<br />I hope this has helped and not scared you!
<br />
<br />Carmen

 

[Jane]

My son used ampho nebs a year ago for a fungal infection. I think it was for 6 weeks. He didn't have any side effects. He felt better at the end but we also changed his diet and added some herbal anti-fungals too.

 

[Jane]

My son used ampho nebs a year ago for a fungal infection. I think it was for 6 weeks. He didn't have any side effects. He felt better at the end but we also changed his diet and added some herbal anti-fungals too.

 

[Jane]

My son used ampho nebs a year ago for a fungal infection. I think it was for 6 weeks. He didn't have any side effects. He felt better at the end but we also changed his diet and added some herbal anti-fungals too.

 

[phutton]

I used Ampho in inhaled formed for about 6 months. First, few months were great!! I had an allergic reaction the 6th month. I had a very high fever and was admitted to hospital.

I did Caspofungin for 5 months via iv and it seemed to help for the APBA.

Good luck!!

 

[phutton]

I used Ampho in inhaled formed for about 6 months. First, few months were great!! I had an allergic reaction the 6th month. I had a very high fever and was admitted to hospital.

I did Caspofungin for 5 months via iv and it seemed to help for the APBA.

Good luck!!

 

[phutton]

I used Ampho in inhaled formed for about 6 months. First, few months were great!! I had an allergic reaction the 6th month. I had a very high fever and was admitted to hospital.
<br />
<br />I did Caspofungin for 5 months via iv and it seemed to help for the APBA.
<br />
<br />Good luck!!