Amphotericin B for ABPA

[TonyaH]

Does anyone have any experience with it? My son is continuing to lose lung function while being treated for m abscessus, and we are now going to try to add in some antifungal treatment for his ABPA. They prefer to use voraconozole, but anything in that family of antifungals has to be avoided due to interactions with his NTM medication. So, they are thinking amphotericin b is the only option. I think I remember reading here at one time that it's a tough drug to take...can anyone share experiences? Also, how you used it...IV or nebbed. Just looking for some 'life-experience' info..Thanks!

 

[Liza]

TonyaH, How are they considering the administration of the Amphotericin B? My oldest daughter was post transplant 7 mo. when she tested + for aspergillus. Which we thought extremely odd because it was in the dead of winter in NE. Anyhow, he team put her on Amph. B, inhaled. It did the job perfectly. We had been told by others that have had to do Amph B by IV that it is extremely rough on the veins. When she had ABPA years prior to her tx, she had been on Sporanox (Itraconazole) and Prednisone for about 6-9 months (2002, hard to remember). It did the job until the post tx diagnosis, 2008. What is NTM?

 

[Dank]

I've had ABPA for several years now, they discovered it first when I was 14. I've had little to no impact or side effects because of it, but had an allergist test me and i'm most allergic to Aspergillis than anything else on the study. My high IGE level caused some concern earlier this year, and I've been on a high dose of prednisone and voriconizole since, but either vori isn't getting to my system (which apparently is common) or its just not that effective, because I've been on the medication for 4 months and my IGE is still thousands more than what it should be. (My ige in jan was 6000+ , and was 5200 in march). When I was 14 I was on Sporanox, but had some sort of allergic reaction to it.

The doctors sent me to the allergist because of ABPA, thinking that they could prescribe me Xolair (but waiting for insurance to approve...etc), which will neutralize the specific part in my immune system which reacts to things like Aspergillis, so my body doesn't constantly overreact. But I'm not certain this is a valid case scenario for your son, as it seems like his allergic reaction is much more severe than mine. I think the goal of the Xolair medication (its an allergy shot) is to basically keep my body from overreacting to things I'm allergic to. It'll cut out the reaction at all, so hopefully that reduces inflamation and improves lung function, as my body will no longer have that allergic reaction to it. That's my understanding of it anyways. I've done some research myself, as I'm not particularly happy about being on Predisone for 4 months straight, and there are very limited options for ABPA from what I can tell.

 

[TonyaH]

Thank you both!

Liza, it has been awhile since I've posted much on this site, but I still think of your girls. Both so beautiful! I hope this finds Rachel well!

NTM is non tuberculous mycobacterium...you probably most commonly hear of Mycobacterium Avium Complex (MAC), and Mycobacterium Abscessus, which is what my son has.

He has been on itraconazol and posaconazol through the years. This time they wanted to try voriconazol but we found out the reactions with his current m. abscessus meds are not good. So, we can use nothing in the 'zol' family for that reason. We are trying to avoid prednisone because 1. prednisone and m. abscessus are a bad mix and 2. prednisone does a number on him. He did a 5 month trial of xolair back in the summer/fall, but we can't really say it helped him, so we are holding that for now. The hospital wants to use IV amphotericin B, but I've been reading about inhaled and just wondered what other's experiences were, and what questions I should ask Monday when I talk with clinic.

Dank, I agree, there are not a ton of options to treat...but with your IgE level I would think treatment would be necessary! I would be interested to know if the xolair helps you at all. I hope it does!

 

[LilyoftheIvoryTower]

My seven year old cultured positively for and had bronch to remove aspergillis, and is currently on inhaled Amphotericin B. (He had adverse liver reactions to voriconazole (sp), no matter which way it was administered.) He is doing wonderfully on it, and his last sputum culture did not (yet) show any still present. It is simple to use, easy to administer, and fairly small time addition to his usual therapy.

 

[Liza]

Tonya, thank you! It's been a rough weekend for me. Even though Anna's anniversary isn't until next week, Easter still marks the anniversary of her death. Rachel is doing pretty well. She has been married for a year and a half almost. Rough year last year with multiple hospitalizations but has been doing good since Nov. with only one. Yay! Anna' had MAC too. They managed to rid her of that as well. At this moment I can't recall what meds they put her on for that. Seems my brain has dumped my ability to recall her meds list at the drop of a hat. I would certainly pick the doc's brains on their thought on inhaled Aph. B. It is a long term inhalation. Can't completely recall how long though, more than 30 days. I hope they consider it and that it does the trick for him.

 

[alexnw]

ABPA - Xolair works for me

After two visits to the ER with ABPA, I was given Voriconazole and Prednisone. The Voriconazole did nothing and was discontinued after a few months. The Prednisone worked if the dosage was kept up (20-40 mg daily). As soon as the Prednisone dosage was reduced to lower levels the ABPA flared up again. After more than 2 years on Prednisone, an allergist helped us get approval for Xolair. It worked immediately. After 6 months I am down to 2 mg Prednisone daily and should be off completely within the next month or two. Xolair really works for me for ABPA. I get bi-weekly injections. Of course it's very expensive and, in my experience, you need an allergist to help get the approval since it's not really approved as a CF treatment (probably because of the cost).

 

[TonyaH]

Hey everyone,
I am updated this thread for future reference...in case anyone else is searching a similar topic in the future. A's team called yesterday. After consulting with NIH in Bethesda on his m abscessus therapy, it was decided that we would go back and use their first choice voriconazol on the ABPA, and switch out his oral azithromycin for zyvox and keep his two IVs going for the abscessus. Hopefully this will make a difference! I'll post an update later to let you all know how this combo works for him.