Starting Arikayce - nervous

Posted by rits @rits, Sat, Jul 6 6:21pm

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.

@heathert

@hydrang3a I was on Arikayce for a year. For me its tricky as I changed to daily meds the same time as I changed to Arikayce so I am not sure which took out my cavities, I feel it was the Arikayce as I was on 3 x week meds for 3years before going to daily with no success at all. But after a year of daily and Arikayce I was clear of MAC. Take care Heather

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I.e. Aricayce, Thank you Heather, that was very good feedback about that med. Glad it worked for you.

Liked by heathert

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@sounder27

Rits. I am seeing my doc tomorrow and will begin the necessary steps for using the Arikayce. Thanks for your info and I hope you will post as you progress with the treatment. I have already checked with my insurance and they do not cover it. I will need to go through the manufacturer’s process to find out the cost. Best to you

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@sounder27 Also check with the Healthwell Foundation for help paying for your meds. It is a non-profit organization. http://Www.healthwellfoundation.org

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@beatitnow

@rits, how is your Amakicin going so far? How long have you been on it? Has your MAC/MAI cleared? Did you have side effects? I am going to be starting soon also. Thank you!

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Thanks for asking for an update. I started Arikayce on a Tuesday in July and all went well, just some coughing and more shortness of breath than my usual for a couple of hours. After Saturday's treatment (#5), I had extreme shortness of breath which didn't stop so I skipped Sunday and contacted my doctor on Monday. She said to stop until I was breathing better and we would take it from there. Pseudomonas and two other nasty bacteria had shown up in my June culture and my doctor said that Arikayce would take care of them as well as MAC.

It took about a month to get back to my normal no so great breathing. When I saw my doctor on August 14, she had amazing news for me. She said that the June culture showed no MAC growth for 9 weeks! OMG! That would be before I even started Arikayce. It's interesting that the June and July reports that I get through Mychart said MAC but she gets a lot more information with charts and other graphics that I can see on her computer screen. Also, she has a Fellow who was with us for the appointment and they were both beaming at me! And there might be a difference between Mychart which only says MAC and her report which say no MAC growth. in any case, Azithromycin and Ethmabutol (I couldn't tolerate Rifampin) worked for me in just a couple of months – started in March 3x per week! If only, I didn't have other organisms growing in my lungs!

She told me to resume the Arikayce but 3x a week, stop the saline which irritates my chronic bronchitis airways and she cut Azithromyin to 250 3x a week from 500, to ease the toilet problems I have (had colon cancer surgery almost 4 years ago and I'm missing almost a foot of colon, almost 2 feet of intestines and the valve between them – a story for another day -lol).

I'm doing the Azithro and Ethambutol on M/W/Fri so I decided to do the Arikayce on T/Th/Sat to attack the bacteria with something every day except Sunday. Everything went okay until this morning. I woke up with horrible thick constant mucus – like Lucy in the candy factory. It wouldn't stop even after I used the vest and Aerobika and had breakfast. The mucus is on my vocal cords as well and I have the croaky, laryngitis, wet deep voice like when I had a cold and it settled in my lungs.

But I haven't used Arikayce since Thursday so is that causing this? I don't think this is the same as the Arikayce loss of voice some of you had but please let me know if I'm going to lose my voice completely. I plan to continue the Arikayce today.

One more piece of news in this very long post (sorry). I just received the results of the August 14 sputum sample and there is no mention of the 3 bacteria that came up in the previous samples. To be honest, since I received the email in June telling me there was a new test result and I saw the pseudomonas, klebsiella pneumonia and cocci and bacilli in the report, my heart pounds each time I get an email telling me there is a new test result. I had a bronchoscopy on July 1 and there were 8 cultures from the lavage and biopsies. It is SCARY. But, I THINK the failure of mention of these nasties today is good news. (It says there is lots of MOLD!!!!! UGH)

Oh, one more thing. Amakicin is the antibiotic which prior to Arikayce reached MAC through an iv or by being inhaled with another drug – I think saline, maybe Albuterol. Arikayce combines Amakicin with liposome through a special nebulizer. Liposome causes the Amakicin particles to be so small that they can get through MAC's protective shell.

I hope you are able to take Arikayce with no trouble. It is the best drug available right now for NTM.

Rita

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@angiejohnson

@rits I have been on Arikayce since January. My only issue has been loss of voice. I am at NJH right now and Dr Huitt is having me take 2 albuterol puffs, then Aerobika, then Arikayce first thing in the morning.

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@angiejohnson Hi. I was wondering two things: 1). Have you lost your voice the whole time, or has it come back? 2). Has the Arikayce not worked yet to kill your bacteria? Is your doctor hopeful that it will. I was told in 3 months the infection could be gone…I don't know if this is overly hopeful. Thanks for your help if would reply back. And, I hope your infection goes away soon if it hasn't already!

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@rits

Thanks for asking for an update. I started Arikayce on a Tuesday in July and all went well, just some coughing and more shortness of breath than my usual for a couple of hours. After Saturday's treatment (#5), I had extreme shortness of breath which didn't stop so I skipped Sunday and contacted my doctor on Monday. She said to stop until I was breathing better and we would take it from there. Pseudomonas and two other nasty bacteria had shown up in my June culture and my doctor said that Arikayce would take care of them as well as MAC.

It took about a month to get back to my normal no so great breathing. When I saw my doctor on August 14, she had amazing news for me. She said that the June culture showed no MAC growth for 9 weeks! OMG! That would be before I even started Arikayce. It's interesting that the June and July reports that I get through Mychart said MAC but she gets a lot more information with charts and other graphics that I can see on her computer screen. Also, she has a Fellow who was with us for the appointment and they were both beaming at me! And there might be a difference between Mychart which only says MAC and her report which say no MAC growth. in any case, Azithromycin and Ethmabutol (I couldn't tolerate Rifampin) worked for me in just a couple of months – started in March 3x per week! If only, I didn't have other organisms growing in my lungs!

She told me to resume the Arikayce but 3x a week, stop the saline which irritates my chronic bronchitis airways and she cut Azithromyin to 250 3x a week from 500, to ease the toilet problems I have (had colon cancer surgery almost 4 years ago and I'm missing almost a foot of colon, almost 2 feet of intestines and the valve between them – a story for another day -lol).

I'm doing the Azithro and Ethambutol on M/W/Fri so I decided to do the Arikayce on T/Th/Sat to attack the bacteria with something every day except Sunday. Everything went okay until this morning. I woke up with horrible thick constant mucus – like Lucy in the candy factory. It wouldn't stop even after I used the vest and Aerobika and had breakfast. The mucus is on my vocal cords as well and I have the croaky, laryngitis, wet deep voice like when I had a cold and it settled in my lungs.

But I haven't used Arikayce since Thursday so is that causing this? I don't think this is the same as the Arikayce loss of voice some of you had but please let me know if I'm going to lose my voice completely. I plan to continue the Arikayce today.

One more piece of news in this very long post (sorry). I just received the results of the August 14 sputum sample and there is no mention of the 3 bacteria that came up in the previous samples. To be honest, since I received the email in June telling me there was a new test result and I saw the pseudomonas, klebsiella pneumonia and cocci and bacilli in the report, my heart pounds each time I get an email telling me there is a new test result. I had a bronchoscopy on July 1 and there were 8 cultures from the lavage and biopsies. It is SCARY. But, I THINK the failure of mention of these nasties today is good news. (It says there is lots of MOLD!!!!! UGH)

Oh, one more thing. Amakicin is the antibiotic which prior to Arikayce reached MAC through an iv or by being inhaled with another drug – I think saline, maybe Albuterol. Arikayce combines Amakicin with liposome through a special nebulizer. Liposome causes the Amakicin particles to be so small that they can get through MAC's protective shell.

I hope you are able to take Arikayce with no trouble. It is the best drug available right now for NTM.

Rita

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Thank you @rits for your detailed update. It sounds like you are doing well killing your bacteria…you must be SO happy!! Keep us posted. 🙂

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@beatitnow

@angiejohnson Hi. I was wondering two things: 1). Have you lost your voice the whole time, or has it come back? 2). Has the Arikayce not worked yet to kill your bacteria? Is your doctor hopeful that it will. I was told in 3 months the infection could be gone…I don't know if this is overly hopeful. Thanks for your help if would reply back. And, I hope your infection goes away soon if it hasn't already!

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@beatitnow

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@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness depends on underlying conditions and if you keep being reinfected. I went to National Jewish in CO in July. I found out I am a carrier for the genetic disorder Alpha 1 Antitrypsen. This causes your bronchial cilia to essentially be paralyzed, which makes it difficult to clear infections. I am anticipating having this until I die. I’m only 47, so doing daily airway clearance and boiling my drinking water and ordering a special shower filter, the only one proven to eliminate MAC. Happy to answer any questions you have!

REPLY
@angiejohnson

@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness depends on underlying conditions and if you keep being reinfected. I went to National Jewish in CO in July. I found out I am a carrier for the genetic disorder Alpha 1 Antitrypsen. This causes your bronchial cilia to essentially be paralyzed, which makes it difficult to clear infections. I am anticipating having this until I die. I’m only 47, so doing daily airway clearance and boiling my drinking water and ordering a special shower filter, the only one proven to eliminate MAC. Happy to answer any questions you have!

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Angiejohnson. What is the name of the shower filter that you use. Thanks

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@angiejohnson

@beatitnow I have gotten my voice back. I’ve been on Arikayce 9 months. I think effectiveness depends on underlying conditions and if you keep being reinfected. I went to National Jewish in CO in July. I found out I am a carrier for the genetic disorder Alpha 1 Antitrypsen. This causes your bronchial cilia to essentially be paralyzed, which makes it difficult to clear infections. I am anticipating having this until I die. I’m only 47, so doing daily airway clearance and boiling my drinking water and ordering a special shower filter, the only one proven to eliminate MAC. Happy to answer any questions you have!

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@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.

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To everyone: What do you all know about the effectiveness rate of Arikayce? I thought in the video it mentioned 30% conversion rate. However, my doctor told me 60%. Has anyone heard any updated information, or what understanding do you all have about the effectiveness rate? Thanks for your help.

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@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.

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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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@sounder27

Angiejohnson. What is the name of the shower filter that you use. Thanks

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@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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