colistin

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anonymous

New member
i have a question. anyone been on colistin inhaled? (probably spelled that wrong)
i was wondering if anyone got headaches off it? my daughter has been on it now for almost 2 weeks for the first time, and ever since that shes been getting headache. does that seem right? do people feel crappy when there on it? i know everyone is different but just asking is it possible?
 
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anonymous

New member
i thought i heard people saying they didnt do well on it.thanks for your reply.
my daughter is suppose to do 2 weeks on colistin and then 2 weeks of tobi. i think im just gonna stop the colistin 3 days short and see if tobi makes her feel better. cause none of this started until she went on that. thanks joesph!
 
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anonymous

New member
I am not on Collistin but I take Tobi and sometimes that mkes me feel crappy. My doc told me to take a few puffs of ventolin before I do it, that it helps with broncho spasms. maybe that might help if you do that.

Nicole 22 CF
 
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anonymous

New member
thanks nicole i will try that, but its only her head that hurts and nausea ...
tobi makes her feel good. have you ever tried colistin? not sure if i like it.lol ,now i wonder if i should just continue it being she only has 3 days left and goes back to tobi for 2 weeks and then back on the nasty med for another. she is in the process of geting tested for a lung transplant so they want her on meds all the time.im not use to this end stage of cf. she is only 16.every little pain she gets i worry cause shes been having ivs every 3 months.yuk .but i know she will only get better once she gets new lungs! thanks again!
 
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anonymous

New member
Wow. She sounds like she is pretty sick right now but sounds like she has a great mom that will do anything for her! I myself have never been on collistin but my brother is on it because he doesn't do well with Tobi. I seem to respond pretty well with the tobi. maybe you should let her doctor know about this. Maybe they can lower her dose. I am about to be evaluated for transplant myself. I am actually doing well right now. I just got a g-tube and have gained a litte weight but my pft's still stink. I hope your daughter is feeling ok at the moment and I hope you don't mind if I put you in my prayers!

Nicole 22 CF
 
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anonymous

New member
hi nicole,
thanks for all the replys. where r u from? we r from chicago. and yes i am telling her doc about the way collistin makes her feel.by the way my name is gail and my daughter is traci!im trying to get traci to excersise more she is on oxygen all the time her lung function is in the low 20s. right now we got all the blood work done some shots .now im just waiting for the call back when to start all the test. traci has been lucky without the feeding tube. her weight is 100 even but they said if she lost any she will have one put in .but since her lungs got worse she just picks at everything. im sure its hard to really eat well when your sick! so i just pack a lot of calories in .i thank you for putting traci in your prayers and your in ours too good luck with all your testing ....<img src="i/expressions/rose.gif" border="0">
 
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anonymous

New member
Thanks! I live around Boston, so I go the Children's there. My pft's are about 17 right now but I actually feel not too bad which is a good thing. The feeding tube was my idea, because I knew I needed one for the transplant becauseI just wasn't eating anymore and I went from weighing 115 pounds to weighing 88 pounds in a year so I told my doctor it's what I wanted. It was too hard for me to get the food in because most of the time after I ate I just threw it back up. My mom tries to get me to exercise more I am kind of lazy with that <img src="i/expressions/face-icon-small-happy.gif" border="0"> I am going to join a rehab program where they deal with people with lung problems so they can tailor fit a workout for you. I am glad your daughter does ok with the weight though, it's such a hard issue but it seems like she has a handle on that. How does she feel about all this? Is she ok with getting a transplant? When I found out I cried for a few days but then said well at least I have this as an option,, buit it's a hard thing to deal with. But I have my mom as my support, I don't know what I would do without her and I am sure your daughter would say the same of you! <img src="i/expressions/heart.gif" border="0">

Nicole 22 CF
 
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jamey

New member
i was supposed to alternate tobi & colistin, each every other 28 days but each time i got done with the colistin i could hardly breathe and would have to immediately do an albuterol treatment. so my doc told me to stop the colistin and just do tobi everyday instead of 28 off & on
 
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anonymous

New member
hi again nicole,
yes traci is very excited she is making all kinds of plans when she is all well.
i agree with being hard to deal with i cried for weeks but now seeing her i want this over for her so she can breathe again. and thank the lord for this option!keep in touch let me know how your doing!
gail.
 
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anonymous

New member
hi joseph,

how far did you get with the transplant doc?...have you had your first appt yet? and you r lucky with no oxygen. my daughters finger tips r always blue even on 2 liters 24/7. you will be in my prayers as well. please let us all know how your doing!
mom (gail) one who had the colistin question!
 
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anonymous

New member
hi jamey,
no headaches at all from the colistin huh? just felt crappy too? now you do tobi every 28 days or always? my daughter did just tobi every 28 days but since her lungs got worse they decided to do colistin 2 weeks then tobi 2 weeks all the time until the transplant!
thanks for the reply.
gail
 
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miesl

New member
My bf does the colistmethate nebs 2x day every other month. He never really seems to have trouble with it.
 
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anonymous

New member
I too was just recently switched to Colistin rather than TOBI as i have become resistant to TOBI......I have never had any problems with it thank god.
 
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anonymous

New member
Gail, one question...How are you mixing the colistin? Some doctors tell you to do it one way, while the medication manufacturer has information to do it another way.

Julie
 
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jamey

New member
gail,
no, i didn't get headaches i just couldn't hardly breathe afterwards and would be gasping for air. i used to do tobi 28 on, 28 off but now i do it full time, never off.
 
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anonymous

New member
Hi - I have a 9 year old daughter, Emma, with CF. We live in Denmark, Scandinavia. Emma inhales Colistin twice a day and has done that in 4 years now without any problems (she has also tried Tobi, but she couldn't breathe afterwards). Her lungs are ''fine'', but unfortunately, she has a hole in her ear drum which could result in infections entering through the ear - that's why she needs her daily dosis of Colistin.

I would like to share CF experiences / differences in treatments / everyday life with CF with someone in the US. You are welcome to send a mail to me at reerslev@hotmail.com

I wish you all a Happy New Year. Best regards Mette
 
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anonymous

New member
julie,
im mixing it with 5 ml of saline.(whole bottle) and the whole bottle of colistin which is 5 ml. 2x a day. thats what the doc told me? sound right?
gail
 
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anonymous

New member
Here's what we do, directly from the directions of the Pharmacy/from Colistin.

Reconstitue the bottle of powder colistin with 2ml of STERILE WATER, Mix it up without shaking, then withdraw 1ml (cc's Same thing) of the reconstituted colistin and put that in the nebulizer "acorn" (as we call it in my house). Then we put 3ml of NORMAL SALINE in with the 1ml of reconstituted colistin that we already put in the nebulizer.

This seems to work very well for my husband, maybe you ought to try the Normal Saline and Sterile water combo before you decide not to use it at all, it might be a little less irritating for her. Just a thought.

Julie
 
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