expereince of taking Voriconazole

Hugs to you all today as we keep fighting. -Rick

I see. Thank you.

As I read all the above and all the many posts in different threads/topics regarding medications for the BE infections I am overwhelmed with thoughts. First I want to say to all of you....WOW....you all, as well as Sue, and others amaze me in terms of all you have had to persevre with in terms of the infections,medications and side affects. I'm not quite sure I will be as strong and determined as you all seem to be.
So far NJH and Tyler doctors didn't feel I needed to be on any drugs as yet due to mild CScan, sputum results and no typical signs of an exacerbation. My PFT is off the scale in the right direction at this point.
I may need all the encouragement you all are able to give should I have to make a medication decision for any of the infections one can develop with BE.
At a few months away from 82 years into life I am not sure I will want to deal with all that. Time will tell because I would imagine my day will arrive when I will hear......''time for treatment with medications for MAC, MAI etc. etc. Thanks for all the thoughts you have shared with me to date.
Barbara

Rick, I have now been on Voriconazole for 7 weeks and just noticed red blotches on my arms. They are not really itchy but very noticeable. I am hoping they will subside so I can continue the duration of my treatment. I noticed you mentioned having sensitive skin from the Voriconazole but did you ever get a rash or bumps on your arms only?

Hi tconz,

I remember reading about the side effects of this medication, rash is a common one. But I would check with the doctor to confirm if it is the rash caused by the medication and whether the rash goes away sometime.
The instructions mention that some side effects like blur vision would go away in a few months.

Take care!
Ling

Some very small just on the normally exposed arms (elbow to wrist) but not enough to worry about. I'm in the sun a lot and wear sleeves or upf long sleeves MOST of the time. I put some of my wife's healing cream on sometimes. No itch.

@tconz Vfend can cause skin issues which I’m sure Rick will explain to you. I was on Vfend forever ( a year or more) and I did get a skin rash similar to what you are describing. It was short lived and clearly may have been from something else. My main side effect was my eyes going wonky and things looking yellowy for a few hours after I took it. That lasted a few months - nothing painful, and then I took it with no side effects . I had to have monthly blood tests at UMASS for the Vfend levels. That is important. Good luck. irene5

Thanks so much for the info and I am hoping the rash goes away like yours did because I really want to finish my 6 month treatment on Voriconazole. My bloodwork is being monitored very carefully as well.

Irene-
How long have you had Bronchiectasis with diagnosis of it and possibly before diagnosis. You have certainly been through a lot of medications and therefore have lots of that thing called perseverance. I hope i have enough of that thing called perseverance when I am told "you need to go on antibiotics"... etc. As I have said before at 81 and 11 months I will think long and hard about going on antibiotics.
Did you have it while teaching? I think that is what you said, you taught school.
Barbara

Hi Barbara! First of all God bless you for your ability to grow up to almost 82 years young. That’s perseverance for sure!! Yes, I taught school for 43 years) k and 1 and did my best to parent 10 children with my husband of 54 years. He only wanted one child !! Raising ten is easier than one I think - they entertain each other. Now we are almost at 16 grandbabies and soon to be first great grand baby! We actually have been very blessed. Nine out of ten gave us no trouble. Number ten has been a bit of a challenge. Lots of perseverance needed for that one!! I was diagnosed by my son in law ( an obgyn ) who was worried about my symptoms. That was my last year of teaching.(2014). I knew something was wrong so that was at least validation. You are kind to use the word perseverance. I’ve screamed. I’ve cried. I’ve had more than one pity party for sure. But here’s the thing Barbara as I’m sure you know. There are way worse things in life than this. We have all suffered greatly. The meds were a real challenge for me. I am a positive person and they did not make me feel positive one single bit. And I was scared to death!!Red/orange urine is scary!! I did persevere - and it wasn’t easy. But I have learned so much about myself and the whole concept of suffering. I always try to put one foot in front of the other as much as possible, trust the good God because he has the bigger picture - and never give up!!!! At your age I don’t know. I didn’t go on medication till after I retired. I would not have been able to continue . Some people do ok. My bronchiectasis has gotten worse so I have to nebulize twice daily and take Levoquin prophylactically . Maybe when you are told to take the meds you will find you actually feel better. It is your choice. Listen to your body and its infinite wisdom. You will make the right decision for you! God bless you real well. ( Irene 5)