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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.
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@beatitnow No I will stop treatment in November. I take Arikayce with Ethambutol and Azithromycin- all 3 times per week. In two months after starting Arikayce I showed significant improvement. That was my March chest CT. Then I had a right middle lobectomy in April. My June CT showed new infiltrates. So they think I keep reinfecting myself. That is why I’m going to great lengths to eliminate NTM in my personal environment.
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1 Reaction@sounder27 The Pall Corporation has one medical shower filter that Dr. Falkingham, microbiologist at Virginia Tech has found to not allow the NTM through. I just ordered it today. It is about $50 per month to maintain and and initial $100 to start with attachments.
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1 ReactionHi 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 there. Glad to hear from you and that’s wonderful news that you have no more Mac growth. I am 5 days in using the Arikayce and so far so good. I am hardly coughing at all and not coughing up anything to speak of. I am told to use the Arikayce every day. It is difficult to work and do all that prep and get ready and cook breakfast and lunch before I go to work. I am having a bit of trouble sleeping and have a slightly elevated heart rate. I am wondering if it’s from the medication. It doesn’t mention those side effects at all as being something to look out for. I see my doc on October 21st. And then again in December when we will do a sputum test. I had a baseline hearing and liver function test before I began the Arikayce and will have follow ups every month that I am on it. Let me know how you are progressing. Sending many blessings your way. Best, Candy
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1 ReactionCandy, it was the 5th treatment that set off my really bad shortness of breath and someone else posted that it was during the first week that she lost her voice. I think if you make it through the first week you should be fine throughout the treatment. Frankly, I'm jealous that you can do the treatment in the morning and go on about your day. I cough so much that I do the treatment around 5:30 p.m. so I will stop before bedtime. Rita
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1 ReactionRits. 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.
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1 Reaction@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.
@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.
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!
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