1. < MAC & Bronchiectasis

Arikares concerns

Posted by at.the.boardwalk@comcast.net @beachbum1945, Mar 14 11:05am

I had no symptoms when diagnosed with bronchiectasis and MAC but was put on 3 antibiotic regime for 18. My infection cleared and I had no side effects. Two years later started coughing up blood, had a CAT scan and given antibiotic to clear up but it always would come back, A new infectious disease doctor determined I hadn’t been on a strong enough regime of antibiotics at that time so now back on big 3 again, but the doctor wants to put me on the Arikares treatment as well. After reading the welcome package I am very concerned about the side effects, especially coughing up blood. The respiratory consultant said biggest side effect is a horse voice and fatigue. Fatigue and stomach issues already exist with antibiotic regime so I am concerned how much more I can handle. Would the addition of this treatment eliminate the mac infection so that it never returns. If that is not the case, why bother adding it. I am a caregiver to my 91 year old husband so any extra free time is very valuable to me. Could anyone tell me their experience with this Arakaris treatment

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

kimba78 | @kimba78 | Mar 14 2:04pm

Hi at the boardwalk, I was put on Arakaris. First they did it with inhalation. That didn't work for me so they put in a tunneled lined. Having the treatments 3xs wk for 3 months. I felt Much better than I was! It really helped me. Hope that helps.

REPLY
at.the.boardwalk@comcast.net | @beachbum1945 | Mar 14 4:30pm

Why didn’t the inhalation work for you, Have you had any side effects? And in addition to your line are you taking 3 other antibiotics ?

REPLY
2 replies
irene5 Irene Estes | @irene5 | Mar 15 4:54am

I am “assuming” the med you are talking about is Arikayce?? It is inhaled. All I can tell you is I was on it after having not such great success with oral meds and was cured with Arikayce. I am also the caregiver for my husband with Lewy Body/Parkinson’s so I understand your plight with side effects and taking care of someone. The Arikares people are correct about side effects being mostly hoarseness. Wishing you well. Irene 5

REPLY
1 reply
blm1007blm1007 | @blm1007blm1007 | Mar 15 11:37am
In reply to @beachbum1945 "Why didn’t the inhalation work for you, Have you had any side effects? And in addition..." + (show)
@beachbum1945

Why didn’t the inhalation work for you, Have you had any side effects? And in addition to your line are you taking 3 other antibiotics ?

Jump to this post

Hi at the boardwalk. You put a smile on my face. Boardwalk is home for me, Jersey Shore. I am now in OKC...so for sure no boardwalk along the beach.

It is hard enough for me to get all things done for myself and as well to try to keep up with important information with having BE/MAC.
A million gold stars for those not only having to take care of themselves but also another. I am single. Being single can be tough in some ways but not as time consuming and possibly as overwhelming as it maybe, or is, for you and others that are caregivers for another.
Wishing you moments of peace and relaxation for you both.
Barbara

REPLY
tte | @tte | Mar 15 2:18pm

I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last May. Still on the big 3. I saw Dr. Pamela McShane in Texas. She ordered the Arikayce for me. So far , I have only had a little loose stool that cleared right up with BRAT (bananas, applesauce, rice & toast). My voice a few hours after doing the inhalation sounds low & like I should be a disc jockey on the radio. Then it goes back to normal. My Arikares program nurse that came to my house said I can try doing this mid way through inhalation: pause the special nebulizer, rinse my mouth/gargle for a bit, then resume inhalation, that really helps. After completing the med, I rinse my mouth & gargle with warm water, brush my teeth, then have a cup of herbal chamomile tea with honey. That has helped. I already had hemoptysis in 2023 when I had multifocal pneumonia, so I guess that is why I'm not too freaked out. I'm willing to try & get rid of this infection so that I may be able to feel better & live longer to watch my granddaughters grow & be there for them. I am 67 yrs old. My biggest problems are the fatigue & poor appetite & awful weight loss, but I already had that with the Big 3 (rifampin, ethambutol, Azithromycin). The Big 3 did decrease the # of innumerable nodules in my lungs, but I still have not flipped to MAC negative. The Arikayce was offered to me & I accepted. Fingers crossed. Good luck to you.

REPLY
2 replies
laborday24 | @laborday24 | Mar 15 4:48pm
In reply to @tte "I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last..." + (show)
@tte

I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last May. Still on the big 3. I saw Dr. Pamela McShane in Texas. She ordered the Arikayce for me. So far , I have only had a little loose stool that cleared right up with BRAT (bananas, applesauce, rice & toast). My voice a few hours after doing the inhalation sounds low & like I should be a disc jockey on the radio. Then it goes back to normal. My Arikares program nurse that came to my house said I can try doing this mid way through inhalation: pause the special nebulizer, rinse my mouth/gargle for a bit, then resume inhalation, that really helps. After completing the med, I rinse my mouth & gargle with warm water, brush my teeth, then have a cup of herbal chamomile tea with honey. That has helped. I already had hemoptysis in 2023 when I had multifocal pneumonia, so I guess that is why I'm not too freaked out. I'm willing to try & get rid of this infection so that I may be able to feel better & live longer to watch my granddaughters grow & be there for them. I am 67 yrs old. My biggest problems are the fatigue & poor appetite & awful weight loss, but I already had that with the Big 3 (rifampin, ethambutol, Azithromycin). The Big 3 did decrease the # of innumerable nodules in my lungs, but I still have not flipped to MAC negative. The Arikayce was offered to me & I accepted. Fingers crossed. Good luck to you.

Jump to this post

They want me to start arskayce because infusions caused hearing issues. Am concerned about cost. Am on 4 oral antibiotics also

REPLY
2 replies
kimba78 | @kimba78 | Mar 16 9:59am
In reply to @beachbum1945 "Why didn’t the inhalation work for you, Have you had any side effects? And in addition..." + (show)
@beachbum1945

Why didn’t the inhalation work for you, Have you had any side effects? And in addition to your line are you taking 3 other antibiotics ?

Jump to this post

The inhalation did not work for me because of having copd and asthma. That's not saying that inhalation doesn't work well for others. I'd give it a try if that's what they want to do. If it doesn't work, they might do intervenes.

I was worried about taking amikacin again but I had a bad case of MAC. Either that or I will die. First i was diagnosed with TB and they treated me aggressively for over a year. I never had TB. They said i should be fine now but i wasnt. It took years to diagnose me right.

All your labs and meds get done through a picline or intervenes line.

The only reason I mentioned a picline is just incase they would tell you needed this. It doesn't mean this will happen, but
you won't be as shocked as i was going to the cancer center for treatments.

REPLY
kimba78 | @kimba78 | Mar 16 10:05am
In reply to @tte "I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last..." + (show)
@tte

I am on week 2 of Arikayce inhaled antibiotic after failing the BIG 3 since last May. Still on the big 3. I saw Dr. Pamela McShane in Texas. She ordered the Arikayce for me. So far , I have only had a little loose stool that cleared right up with BRAT (bananas, applesauce, rice & toast). My voice a few hours after doing the inhalation sounds low & like I should be a disc jockey on the radio. Then it goes back to normal. My Arikares program nurse that came to my house said I can try doing this mid way through inhalation: pause the special nebulizer, rinse my mouth/gargle for a bit, then resume inhalation, that really helps. After completing the med, I rinse my mouth & gargle with warm water, brush my teeth, then have a cup of herbal chamomile tea with honey. That has helped. I already had hemoptysis in 2023 when I had multifocal pneumonia, so I guess that is why I'm not too freaked out. I'm willing to try & get rid of this infection so that I may be able to feel better & live longer to watch my granddaughters grow & be there for them. I am 67 yrs old. My biggest problems are the fatigue & poor appetite & awful weight loss, but I already had that with the Big 3 (rifampin, ethambutol, Azithromycin). The Big 3 did decrease the # of innumerable nodules in my lungs, but I still have not flipped to MAC negative. The Arikayce was offered to me & I accepted. Fingers crossed. Good luck to you.

Jump to this post

P.s. I just got tested after a year so far on meds. I am not coughing up flem but I tried. They said at first it probably wasn't enough. The I.D doc came back and said, they could test what I had done. He said he would say he's 80% that I'm negative? I get CT this week. It's been a little while.
I'm on the same meds you are..

When we're you diagnosed with MAC?
When did they start your treatments?

REPLY
1 reply
kimba78 | @kimba78 | Mar 16 10:14am
In reply to @irene5 "I am “assuming” the med you are talking about is Arikayce?? It is inhaled. All I..." + (show)
@irene5

I am “assuming” the med you are talking about is Arikayce?? It is inhaled. All I can tell you is I was on it after having not such great success with oral meds and was cured with Arikayce. I am also the caregiver for my husband with Lewy Body/Parkinson’s so I understand your plight with side effects and taking care of someone. The Arikares people are correct about side effects being mostly hoarseness. Wishing you well. Irene 5

Jump to this post

Excuse me for spelling it wrong

REPLY
irene5 Irene Estes | @irene5 | Mar 16 11:50am

Certainly no worries about spelling on the Mayo:) .

REPLY
View MoreView Less
Please sign in or register to post a reply.