Hi, I'm new to the forum and looking for some advice, experiences of Voriconazol?<div><br></div><div>I'm female 29 DDF08 FEV1: 42% <br><div><br></div><div>I was put on Itraconazole 3 months ago to treat a very raised IgG level, which indicated the presence of Aspergillus. I do not have ABPA as my IgE is normal.</div><div><br></div><div>My IgG was still the same after 3 months treatment so they moved me onto Voriconazole. 400mg twice a day for the 1st day then 200mg twice a day for the rest of the course, however long it will take!</div><div><br></div><div>So anyway, I started it on Tuesday night and since I feel so odd, really not myself. I had an odd hallucination last night and nightmares (I never have nightmare). My vision is very bizarre which they did explain might happen. Everything very bright and odd colours, flashing when i close my eyes. Also finding it very hard to sleep. </div><div><br></div><div>So I just wondered if this settles down? I'm not sure what else they can use if this doesn't work, so i feel I have to stay on it and really try to deal with it. I won't be able to though if it carries on like this.</div></div><div><br></div><div>I guess I'm looking for some reassurance!</div><div><br></div><div>Thanks for any repliesx</div>
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Voriconazole/V fend
- Thread starter Rachie
- Start date
Hi, I'm new to the forum and looking for some advice,experiences of Voriconazol?<br>I'm female 29 DDF08 FEV1: 42%<br><br>I was put on Itraconazole 3 months ago to treat a very raised IgG level, which indicated thepresenceof Aspergillus. I do not have ABPA as my IgE is normal.<br>My IgG was still the same after 3 months treatment so they moved me onto Voriconazole. 400mg twice a day for the 1st day then 200mg twice a day for the rest of the course,howeverlong it will take!<br>So anyway, I started it on Tuesday night and since I feel so odd, really not myself. I had an odd hallucination last night and nightmares (I never have nightmare). My vision is very bizarre which they did explain might happen. Everything very bright and odd colours, flashing when i close my eyes. Alsofindingit very hard to sleep.<br>So I just wondered if this settles down? I'm not sure what else they can use if this doesn't work, so i feel I have to stay on it and really try to deal with it. I won't be able to though if it carries on like this.<br>I guess I'm looking for somereassurance!<br>Thanks for any repliesx
Hi, I'm new to the forum and looking for some advice,experiences of Voriconazol?<br>I'm female 29 DDF08 FEV1: 42%<br><br>I was put on Itraconazole 3 months ago to treat a very raised IgG level, which indicated thepresenceof Aspergillus. I do not have ABPA as my IgE is normal.<br>My IgG was still the same after 3 months treatment so they moved me onto Voriconazole. 400mg twice a day for the 1st day then 200mg twice a day for the rest of the course,howeverlong it will take!<br>So anyway, I started it on Tuesday night and since I feel so odd, really not myself. I had an odd hallucination last night and nightmares (I never have nightmare). My vision is very bizarre which they did explain might happen. Everything very bright and odd colours, flashing when i close my eyes. Alsofindingit very hard to sleep.<br>So I just wondered if this settles down? I'm not sure what else they can use if this doesn't work, so i feel I have to stay on it and really try to deal with it. I won't be able to though if it carries on like this.<br>I guess I'm looking for somereassurance!<br>Thanks for any repliesx
Hi!
<br />I am on vfend as well, and I did have the same reaction when I took the 400 mg dose, and maybe 1-2 times after taking the 200 mg dose.
<br />
<br />I agree - if it goes on much longer, I wouldn't be able to take it either!! Good luck, I hope it subsides very quickly!
<br />I am on vfend as well, and I did have the same reaction when I took the 400 mg dose, and maybe 1-2 times after taking the 200 mg dose.
<br />
<br />I agree - if it goes on much longer, I wouldn't be able to take it either!! Good luck, I hope it subsides very quickly!
M
MCGrad2006
Guest
Yes my eyes did the same thing! Mine would happen like an hour after I took the pill for a very short time...and then I would be fine the rest of the day. I am not so sure the sleeping gets easier. I was just recently on Vori for a month and I did not have nightmares necessarily, but I would have night sweats. I could not sleep very good because I was always soooooo hot or so cold. You know in the winter you start off being FREEZING at night so you cover yourself completely. Then at some point I would wake up drenched in sweat. Thats how it was for me.
I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
M
MCGrad2006
Guest
Yes my eyes did the same thing! Mine would happen like an hour after I took the pill for a very short time...and then I would be fine the rest of the day. I am not so sure the sleeping gets easier. I was just recently on Vori for a month and I did not have nightmares necessarily, but I would have night sweats. I could not sleep very good because I was always soooooo hot or so cold. You know in the winter you start off being FREEZING at night so you cover yourself completely. Then at some point I would wake up drenched in sweat. Thats how it was for me.
I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
M
MCGrad2006
Guest
Yes my eyes did the same thing! Mine would happen like an hour after I took the pill for a very short time...and then I would be fine the rest of the day. I am not so sure the sleeping gets easier. I was just recently on Vori for a month and I did not have nightmares necessarily, but I would have night sweats. I could not sleep very good because I was always soooooo hot or so cold. You know in the winter you start off being FREEZING at night so you cover yourself completely. Then at some point I would wake up drenched in sweat. Thats how it was for me.
<br />
<br />I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
<br />
<br />I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
<br />
<br />I just dealt with it. If the eye sight thing lasted longer or was more like the whole day for me, I would have said something to my doctor, but it subsided very quickly each day. So I got that reaction every day, but it did not last the whole day. Does that make sense?
<br />
<br />I do remember the very first time I was on it, it was scary, especially trying to get to sleep at night! I would see flashing lights when my eyes were closed, but I kept on it and just dealt...Hopefully you can figure something out.
Keelyisbored
New member
The exact same thing happens to me! I thought I was just weird... <img src="i/expressions/face-icon-small-happy.gif" border="0">
Keelyisbored
New member
The exact same thing happens to me! I thought I was just weird... <img src="i/expressions/face-icon-small-happy.gif" border="0">
he he just saw your reply! Yes I do have a dog (mini wirehaired dax) and I did hug him, really helped!
So an update.....after 6 months of V fend my IgG was still over 200 and I had to stop it as got horrific skin reaction to the sun. (Idon't have ABPA so IgE normal), so it didn't work!
I'm now on Posaconazole (Noxafil) started it 2 days ago. I've been told its £500 a bottle crazy! They are also going to give me 2 weeks of Caspofungin IV which is a new but very effective antifungal. This is £500/dose I can't believe the cost of these things. My consultant said she just wants to hit it really hard so I'm rid of it (getting married in Oct!). So fingers crossed. Just wondering if anyone on the forum has been on Noxafil or Caspofungin? The Posa has had far less side effects than v fend so far... I can tell I have Aspergillus it sort of stops me taking deep breathes, as if its in my small airways blocking them. how does it make others feel, can you tell when you have it?
Anyway hope you are all well.
xx
Lives in London, UK DDF508
So an update.....after 6 months of V fend my IgG was still over 200 and I had to stop it as got horrific skin reaction to the sun. (Idon't have ABPA so IgE normal), so it didn't work!
I'm now on Posaconazole (Noxafil) started it 2 days ago. I've been told its £500 a bottle crazy! They are also going to give me 2 weeks of Caspofungin IV which is a new but very effective antifungal. This is £500/dose I can't believe the cost of these things. My consultant said she just wants to hit it really hard so I'm rid of it (getting married in Oct!). So fingers crossed. Just wondering if anyone on the forum has been on Noxafil or Caspofungin? The Posa has had far less side effects than v fend so far... I can tell I have Aspergillus it sort of stops me taking deep breathes, as if its in my small airways blocking them. how does it make others feel, can you tell when you have it?
Anyway hope you are all well.
xx
Lives in London, UK DDF508
musclemania70
New member
I can't really tell when I have an aspergillus reaction vs regular cf feeling. Its hard to tell a difference for me.
However, I am on Vfend right now and I do have hallucinations when I close my eyes, I get super sensitive of sunlight, (like a need sunglasses on inside the house), and my skin gets VERY red if out in the sun for 10 mins.
There is also difficulty sleeping.
However, I am on Vfend right now and I do have hallucinations when I close my eyes, I get super sensitive of sunlight, (like a need sunglasses on inside the house), and my skin gets VERY red if out in the sun for 10 mins.
There is also difficulty sleeping.
B
brewz2
Guest
Scared me at first, but the same thing happened. On the very first day she took it, which is the "power dose" day, she kept complaining of everything having a tint of yellow, and she just felt "strange" all day. Our CF team had her see an eye specialist b/c she also has type 1 diabetes, and anything to do with her eyes, they don't play around with. Anyways, they determined it was just the medicine, and that the side effects would clear once she started the regular daily dose of 200 mg 2X a day....and sure enough, she's fine. Three months later, after high doses of prednisone, and voriconazole, her igg levels areback to normal <img src="i/expressions/face-icon-small-smile.gif" border="0">
Tracey, mom to Sydney (11) w/cf Df508, type 1 diabetes, asthma and ABPA and Seth (7)w/cf Df508
"Think of someone that you love unconditionally with everything you have, and then multiply that times inifinity....that's how much God loves you"
Tracey, mom to Sydney (11) w/cf Df508, type 1 diabetes, asthma and ABPA and Seth (7)w/cf Df508
"Think of someone that you love unconditionally with everything you have, and then multiply that times inifinity....that's how much God loves you"