Looking for prednisone substitute to treat ABPA for CF

anonymous

New member
Does anyone know of any medications that have worked to treat ABPA (besides prednisone)?
my daughter has all the bad side effects associated with prednisone.The docters are unsure of the drug xolair as an option.If you know anyone who has had good results please let me know.She was on prednisone for one and a half years.She got a couple months break and weve been told she needs to start again.
 

kybert

New member
i feel your pain. i actually refuse to take steroids due to the side effects [some which have been permanent] being worse than abpa itself. luckily it hasnt flared up again sice the last dose anyway. as to whether there is a substitue that is equally as effective, there isnt really one. BUT, there are other ways to treat abpa. no matter which route you choose to take, steroids or no steroids, your daughter should be on itraconazole [sporanox], which is an anti fungal. after all, there is no point giving steroids if nothing is being done to actually eradicate the aspergillus in the first place! its like giving pain killers galore to someone with a broken leg but not actually treating the broken leg! with itraconozaole you need to make sure you are on enough of it otherwise its useless and you need regular liver function tests done. its also good to drink a glass of coke with the itraconazole tablet, especially if your daughter is on acid reducing meds, because it absorbs better when the stomach is acidic. some countries/centres actually use nebulised steroids in place of oral steroids. ive heard its not as effective as oral steroids but it still does the job. and when you think about it its much better to have the steroids go directly to the place that needs it the most, the lungs, instead of going to every other organ in the body and causing havoc. there is also alternate day therapy, where people take a double dose 1 day and nothing the next. the theory behind that is on the day you dont take anything, your own adrenal glands are forced to kick in and do its thing, therefore reducing side effects. i have not tried that so i dont know if it really works but anything is worth a try.
 
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luke

Guest
Anonymous,

As far as I know there is not another PO substitute to prednisone for ABPA. I am a huge fan of motrin as an anti-inflammatory for CF but with a disease like ABPA steroids are the only answer for the symptoms of ABPA (as far as I can remember). I have a couple good friends that are pulmonologist that prescribe Xolair, I will ask one of them for you today. I am interested in how they diagnosed your child and how they "track" the severity. Did they do a CT to confirm the diagnosis? Do they do a special IGE test for ABPA?

Kylie is correct doctors may decide to try to "kill" the aspergillus....this is definitely a specialty thing and would recommend a "team" (pulmonologist, immunologist, etc...)


If you want to talk specifics off the forum please don't hesitate to email me....lukembarrt@yahoo.com


Luke
 

kybert

New member
just looking at the xolair you guys are mentioning. sounds promising. didnt think it would be available in australia but i looked then and it was. what a suprise! i bet you it costs a bucket load though. just looking at pharmacy prices..............





$745???!!! is that just for one dose too??? ok, not so promising after all. <img src="i/expressions/face-icon-small-sad.gif" border="0"> who the hell can afford that?
 

anonymous

New member
My daughter actually never tested positive for aspergillus in the samples taken durring bronchoscopies or sinus surgery. Her allergy testing did come up positive for allergy to aspergillus. She has densities on the right upper lobe in the right lung that flare up .This shows up on x-ray and mri. She has been on itriconozole but I dont think she took it properly since she is also on prevacid. I dont know if itriconozole would work again if the sputum cultures dont actually find any colinization.She has ige blood tests once a month.When the numbers go up to high and her lung function tests go down they put her on prednisone.She has had a regular allergy test for other allergies(dust,dogs cats,grass)these come up neg.The IGE blood test is a total IGE. I dont think it is specific to abpa. She was recently diagnosed with MRSA which of course is complicating the matter. Sometimes it is hard for the docters to determine weather her cough is ABPA,sinus problems,or MRSA.So they treat everything .this leads to a ton of meds.She is on IV med vancomyisn now even though the last sputem test was from June. Her docters dont seem to confirm anything for sure before they treat her. they say none of the tests she does are conclusive so they go by other clues IGE x-rAY PFTS.She is on advair,and at the moment I think the dose is way to high for her age 500/50.They keep pushing to put her back on prednisone.Her lung functions are not too below her baseline,but the x-ray does look much worse though.So is her cough. I had heard some promise with the med zolair.Her doctors are reluctant to try it unless they hear of some success.
 

JennifersHope

New member
If anyone finds a replacement for Prednisone.. I would personally spend the rest of my life indebted to them....I would do anything short of selling my soul.. that belongs to God.... I feel your pain of the steroids so much so... Seems like the more I take them..which is on a daily basis.. the more sensitive I am becoming to them. and each time I have a flare up.. I need more and more pred and I react more and more strongly.. I used to be able to handle a certain amount, now it seems like I am getting ALL the horrible side effects...... Ugggg and I am a person that tends to be anxious to begin with..now I feel like a crack head.... and not in love with life to say the least....and if one more person tells me " Oh Jenn it isn't you it is the steroids.. I may beat them with a stick... cause meds or not.. it is me..it is how I feel and it isn't going to get better..and if it does I will only feel better for a short time till they jack me back up on them . and I am tired of feeling like a mental case and overreacting because of some stupid drug that is suppose to keep me alive and well so THERE...HA............................

Anyway..... I don't personally feel like they will anytime soon have a replacement for pred... their just isn't enough demand or money for it...if it is just short term.. I would maybe consider taking bursts to feel better..and to get rid of the sickness but long term.. I wish I could describle to you what it has done to me, my swollen body and my mental state..

Sorry I am not the wealth of encourgament that you were looking for..but.. on a good side.. at least she doesn't HAVE to have them to stay alive..


Jennifer
 

oddfreak7

New member
To Jennifers hope, I know it is my daughter(11yrs old) going through these things and not me ,but I do understand and sympathize for what you are going through. I do believe the side effects can be worse than what they are supposed to help.Don't let anyone tell you that it is the prednisone and that it is not a big deal.Ihope you find some aternative. Nothing I can say can convey how sorry I feel for what you go through.Unfortunetly my daughters problems with pednisone sound just like yours and Id love to say she doesn't need them but she does.Like you she doesn't seem to have a choice.
 
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luke

Guest
Anonymous,

I have one recommendation, maybe ask your docs to begin to look at an IGE rast as well as the regular IGE. This is a more specific test for the reaction to aspergillus that will not be affected as much by normal allergens. ABPA is a diagnosis that shouldn't come upon lightly and should be tracked as such. Do you mind me asking where you live?



Luke
 

kybert

New member
<blockquote>Quote<br><hr>Seems like the more I take them..which is on a daily basis.. the more sensitive I am becoming to them<hr></blockquote>

totally agree with that. my very first course wasnt that bad. the next few courses, as well as getting more side effects, the ones i already had got worse and worse. but the last course was hell. absolute hell. i knew that if i didnt get off of them my body would be ruined for life.
 

JennifersHope

New member
Kylie that is exactly how I feel but if I stop taking them it is suicide...literally..what a suck way to live.

Before I was diagnoised with addison's .my brain started to shut down and I became a mess..emotionally..couldn't remember anything, ppl thought I was lying, I was so out of control, I lost so much that I had worked so hard for right out from underme and I had to start over again...... ...no one knew what to do with me.. they even offered to electric shock therapy my brain.thinking I had a pschy disorder.... Holy Cow thankfully someone somewhere realized what was going on and gave me steroids....it is amazing how our bodies need something so badly to function yet.. the side effects of it are so deadly..I am going to chose to start being thankful for these steroids..otherwise I am going to go down a slippery slope of emotional trauma...

Jennifer
 

kybert

New member
oh jennifer. i feel for you so much. <img src="i/expressions/face-icon-small-sad.gif" border="0"> id go absolutely crazy [literately] if i was on high doses permanently. damned if you do, damned if you dont eh. does anyone know if people are actually researching alternatives to steroids. or do they not bother?
 

anonymous

New member
Hi Jennifer, I am a 34 yr patient at Boston Children's Hospital and have been on Xolair for 5 months. I USED to be someone who could never come down off the prednisone, ALWAYS had an inahler with me...and I can honestly tell you that today I am on 0mg of prednisone...and at this moment have no clue where my inhalers are!!! It takes time for Xolair to work, and it is a pain to get the monthly shot...but well worth it. I know others have said how expensive it is, but my insurance covers it ( mass health).
Good Luck!
Amy
 

cfmomma

New member
I HATE Prednisone!!!! I took high doses for years. My son is the one with CF, I have Crohn's disease, a digestive disease. I recently had a flare-up and steroids were brought up. I had horrible side effects in the past and refused. However, there is a new steroid called Budesonide. It is metasized in the liver only once and so the chance of side effects is diminished or non-existent. I have been on it for two months and my face is not puffy, no glaucoma, very little mood swings or insomnia. It is out on the market, primarily for Crohn's patients, But talk to your doctor. I would assume that it would help anyone who responded to Prednisone. Good luck, I can empathize with you on the nasty side-effects of that evil drug.
 

Jane

Digital opinion leader
I don't know if the original question is still current, but my son is on sporinox for ABPA. I can't remember why it was chosen over prednisone. So far no side effects.
 

Kanake676

New member
This is from when I was young, probably 10 or more years ago, but think I was on Theophyline (not sure of spelling) for ABPA. I was taken off of it long ago, so I don't know how affective it is, or if it's even an accepted method of treatment now, but I thought I'd throw it out there as an idea.
 

TwistedTanya

New member
Have you ever tried taking an anxiety medication for some of the side effects of prednisone? I take Effexor for anxiety and depression and it has really helped me out a lot.
 

TwistedTanya

New member
Have you ever tried taking an anxiety medication for some of the side effects of prednisone? I take Effexor for anxiety and depression and it has really helped me out a lot.
 

TwistedTanya

New member
Have you ever tried taking an anxiety medication for some of the side effects of prednisone? I take Effexor for anxiety and depression and it has really helped me out a lot.
 

JennifersHope

New member
I have been on steroids for a little over three years now without a break, and I won't ever get a break again till I am not alive anymore.. I need them for another reason other then CF but I can tell you for sure when I am on higher doses of steroids I have to take ativan, or sleeping pills or both.. I am just to antsy or high strung.. moody, emotional.. sort of like a real bad case of PMS... I don't currently need anything long term just for when I am on high doses...
 
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