rits
@rits
@rits
Posts: 40
Joined: May 09, 2019
Starting Arikayce - nervous
Hi All. I have been lurking here for a while and have learned a lot.
I was diagnosed with slow growing MAC several months ago.. I am being treated by a University of Chicago pulmologist who specializes in bronchiectasis and ntm . She's terrific and if anyone is looking for a specialist in the Chicago area, I would gladly recommend her. She started me on the 3 antibiotics and told me to bring in a sputum sample every month. I had to stop Rifampin due to severe abdominal pain. Apparently, patients have been doing just as well on Azithromycin and Ethambutol and trials are underway to determine whether Rifampin is needed. While it is too late to enroll me in the trial, my doctor is confident that I will do just as well without the Rifampin as with it. (She is currently running 4 different studies, has a resident and a Fellow assigned to her and, most important, I trust her.) My 2x a day airway clearance consists of a percussion vest, an aerobika and 3% saline (I can't tolerate 7%).
MAC has shown up in all 5 of the samples I have brought in so far. Sadly, the June sample also showed moderate pseudomonas along with at least two other bacteria. In the last two weeks, I had a pft (pulmonary function test) with 6 minute walk, a ct scan and a bronchoscopy with biopsies of a suspicious area in my right upper lobe. I am in the start up phase of Arikayce which hopefully will take care of the MAC, the pseudomonas and all the other nasty stuff (fingers crossed). I have spoken to a rep of the specialty pharmacy and verified insurance. My assigned coordinator sent me a welcome package and called yesterday. Once the medication has arrived (which should be soon), a nurse will come out to set me up and I will do the first dose in her presence.
I am very nervous with respect to the possible side effects. I remember reading in a discussion or two here a mention of Arikayce but I can't find it. I would love to hear from anyone who is taking this drug. Did you suffer any of the side effects? I understand that hoarseness is a common side effect but I am more worried about bronchospasm and coughing up blood.
Thank you for any personal experience with this drug.
Liked by Terri Martin., Volunteer Mentor
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3594
Joined: Nov 18, 2016
@rits Hi Sounder, i hope you find this. I'm glad you were finally able to start Arikayce and I hope it works for you. I wrote a very long update on this thread Sept 3.. My last appointment was on August 14 and my wonderful doctor told me that my June sputum sample (I was bringing them in monthly) showed NO MAC GROWTH! Yay!!!! I had not started Arikayce yet so Azithromycin and Ethambutol killed it. However, that same sample showed many Pseudomonas, kleibsella and a fungus. I am doing Arikayce to kill them.
My lungs do not like anything nebulized and I couldn't do 3% and Arikayce. I stopped the 3% and do Arikayce 3x a week. I cough during the treatment and for an hour or more after so I'm sure I'm coughing up some of the Arikayce. It was going so well that I tried adding a 4th day but I had terrible breathing for several days and had to skip everything. I was told to bring a sample in two months and my appointment is this week. I hope I have a good report!.
@rits Hi Rita! I will be praying that you come back from your dr appt with a good report. I have had the pseudomonas before, it was a real drag. Klebsiella is typically a hospital borne bacteria; do you know where you might have picked that up? Please keep me posted on how you are doing.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3594
Joined: Nov 18, 2016
@beatitnow @angiejohnson…1). So, do you expect to be on Arikayce your whole life? I am 48. I've been on big 3 for a little over 2.5 years. I am hoping Arikayce is going to help me get rid of this. 2). Are you still taking the other two regimens from the Big 3 besides Rifampin? Thank you for your help.
@beatitnow Hi there. Bear in mind that mac is rarely beaten permanently, especially if you have bronchiectasis. Drugs do not cure bronchiectasis, or other circumstances behind why we get mac. Chances are that you may need low dose maintenance antibiotics for many years to keep the mac away once it appears gone. This disease and infection is very complex; that is why drs tend to try diff ways to treat it, and honestly, most don't even really know how to treat it. I think that they have that 'throw enough mud on the wall something will stick' mindset. On the brighter side, meds have come a long ways and getting approved quicker. Education on this topic is becoming more universal. And research is amping up.
rits
@rits
@rits
Posts: 40
Joined: May 09, 2019
@windwalker @rits Hi Rita! I will be praying that you come back from your dr appt with a good report. I have had the pseudomonas before, it was a real drag. Klebsiella is typically a hospital borne bacteria; do you know where you might have picked that up? Please keep me posted on how you are doing.
Hi Terri, Yes, I picked up the bacteria in the hospital. Last December, a sore throat turned into an exacerbation of my lung diseases and, when I couldn't get off the chair due to the inability to breathe, I called 911 and was in the hospital for 17 days. I've had a lot of serious medical problems requiring hospitalization over the years, but nothing like this! I reported my November 2018 MAC dx and their testing showed no other bacteria, just a rhinovirus. In May, a few pseudomonas appeared and in June the klebsiella, many pseudomonas and a fungus showed up. Very frustrating!
rits
@rits
@rits
Posts: 40
Joined: May 09, 2019
@windwalker @rits Hi Rita! I will be praying that you come back from your dr appt with a good report. I have had the pseudomonas before, it was a real drag. Klebsiella is typically a hospital borne bacteria; do you know where you might have picked that up? Please keep me posted on how you are doing.
Hi again Terry! Despite being a germophobe (we probably all are now), I picked up a virus and am waiting to hear from my dr about whether I should come in tomorrow. I apparently have NO resistance.
I'm so sorry that you have been dealing with these horrible bugs for so long. I'm glad you have found a protocol to keep it all under control. While discussing snorkeling, you said you have low lung function. Is that from fighting the bacteria, bronchiectasis or some other condition? I apologize if I am being too inquisitive. Rita
sounder27
@sounder27
@sounder27
Posts: 98
Joined: Jan 11, 2019
Rits and sandykayhud. I have been 11 days on Arikayce and so far so good. My voice got a little squeaky one day but that’s it so far. I think it’ll be okay!! I use it in the morning, gargle with hot salt water right after and then eat breakfast. I think that helps to clear the throat. I will continue to post as I progress.
beatitnow
@beatitnow
@beatitnow
Posts: 50
Joined: Feb 25, 2017
sueinmn
@sueinmn
@sueinmn
Posts: 126
Joined: Aug 12, 2018
@beatitnow Hi everyone. I have been on the Big 3 antibiotics for 3 years. Does anyone know what would happen if you stop the antibiotics all together and eat right and exercise? Do you think it can stay under control?
What are the results of your most recent sputum cultures and CT scans? Do you do any nebs or use a flutter device to keep your lungs clear? Have you talked to your pulmonologist or infectious disease doc? Everyone has a different experience with MAC and bronchiectasis.
In my case, even though the antibiotics (daily) have not eradicated the infection, I persist because the most recent CT shows still-growing pockets of infection and the cultures keep growing the bug. I don't ever want to feel as sick as I was when I started treatment in June 2018. We will be revisiting the issue after my next CT in December, considering cutting back to 3x/wk for 6-9 months if the scan looks better and my cultures are clean.
Other people here will have different stories for you. You will need to base your decision on your health, whether you still have actve MAC, other conditions you have – I recommend you talk with your doc before you make any changes.
Ethan McConkey, Moderator
@ethanmcconkey
@ethanmcconkey
Posts: 741
Joined: Jul 31, 2018
Hi @2019mc, you may have noticed I moved your post to this existing discussion on Arikayce so you can see what others have said about using this medication. Simply click VIEW AND REPLY in your email notification to get to your post.
@sounder27 @rits and @sueinmn may be able to share their experiences and knowledge about the arikayce.
Back to you @2019mc are you currently considering taking arikayce or will you be starting it soon?
@sounder27
In reply to @rits
Rits. Nurse told me 3rd to 10th day are the critical times for reactions. The 2nd day I needed to go to the dentist first thing in the morning, since I broke one of my molars eating nuts in my cereal!!
My coughing lessened up in August after 20 days on keflex and has not returned to the previous degree. I only work part time 3 to 4 days a week and go in at 10 am.
Liked by Terri Martin., Volunteer Mentor