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
angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 13, 2019
@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.
Liked by Terri Martin., Volunteer Mentor, rits
rits
@rits
@rits
Posts: 40
Joined: May 09, 2019
Thank you Angie. I started Tuesday and so far my voice is fine. Do you remember how long it was before you noticed any problem with your voice?
Liked by Terri Martin., Volunteer Mentor
angiejohnson
@angiejohnson
@angiejohnson
Posts: 28
Joined: Feb 13, 2019
@rits Thank you Angie. I started Tuesday and so far my voice is fine. Do you remember how long it was before you noticed any problem with your voice?
It progressed within the first week. Hopefully yours stays fine!
Liked by Terri Martin., Volunteer Mentor, rits
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3594
Joined: Nov 18, 2016
@sounder27 Windwalker. Hello Terri, I called Mayo Pulomonary again today and they were much more accommodating and told me to call every day at 9 my time to check for any cancelations. I felt much more positive about getting an eventual appointment. Just wanted to share.
@sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please keep me posted.
Terri Martin., Volunteer Mentor
@windwalker
@windwalker
Posts: 3594
Joined: Nov 18, 2016
@sounder27 Windwalker. Hello Terri, I have had many jobs throughout my working life. Started out as a sculptress for a toy company, then a jewelry designer, then an aerobics instructor and yoga instructor. After my divorce, I worked as an art teacher for a brief year then for another year as a director of a ymca senior center in a building that had asbestos and black mold. After that I settled into a Home Depot as a decorator and then a kitchen designer. I have been there for 15 years. Environment there is, as you might surmise, extremely dirty and particulate filled… not to mention full of various toxic chemicals. I have traveled to Greece and New Zealand, but mostly travel to west coast and New Mexico. I live in New England. What seems to be the common element that you are finding among MAC and bronchiectasis patients? I would have thought it to be more a gastrointestinal issue that causes the bronchiectasis and that makes us more susceptible to the micobacteria. I find it fascinating that there are so many women who are well educated, independent and who seem not only take care of themselves well, but who also advocate for themselves well. It sure is interesting that it is more common in women over 65. I would be pleased if you could share any commonalities that you find we all share.
@sounder27, chatty2, and @rits Hi girls. I am collecting data to hopefully submit it for studies in the future. I do not think anyone, anywhere; is gathering what I have. My findings so far, are that a great majority of mac infected women worked in the medical field (many were nurses). Second to medical, is the teaching field. Lots and lots of teachers are mac infected. What the two have in common are that both of those career fields expose you to a lot of people and a lot of germs. The other thing that comes to mind is that most women of menopause age get this, and you hear of very few men getting it. Is this disease driven by the lack of testosterone? Before menopause, we all had some testosterone in us. Maybe that is the protective link?? I collect data on localities to see if more places are becoming 'hotbeds' for mac. I ask about travel to see if there is any correlation there. Thank you for contributing that info I hope it helps us some day.
Liked by Brenda R.
jammer
@jammer
@jammer
Posts: 35
Joined: Nov 14, 2018
jammer
@jammer
@jammer
Posts: 35
Joined: Nov 14, 2018
@windwalker @sounder27, Ah, good! I will keep my fingers crossed that you get an appointment soon! Please keep me posted.
I have had MAC for 6 months have been getting treated locally here in FL. am going to Mayo, Jacksonville next month. Hoping they can do more than locally. I am so tired all the time and no energy at all. Does anyone else have these problems.
sounder27
@sounder27
@sounder27
Posts: 98
Joined: Jan 11, 2019
@jammer I have had MAC for 6 months have been getting treated locally here in FL. am going to Mayo, Jacksonville next month. Hoping they can do more than locally. I am so tired all the time and no energy at all. Does anyone else have these problems.
Jammer. Tired??? That’s an understatement. The exhaustion I feel is all encompassing. If I sit down for more than 5 minutes, I fall asleep in the chair. It has become difficult to go to work and I have had to reduce my hours to part time. I’ve become a real party pooper!!! Lol
@jammer I have had MAC for 6 months have been getting treated locally here in FL. am going to Mayo, Jacksonville next month. Hoping they can do more than locally. I am so tired all the time and no energy at all. Does anyone else have these problems.
Hi I am 85 years old and was diagnosed five years ago when I had pneumonia. But Mac was
suspected isix years before that but couldn’t get a good test. Six months ago they found I had nodules in my lungs. My only symptoms are tiredness tiredness tiredness. Not every day. And I still walk 2 miles a day. There is no way I would be treated with those three anabiotic’s. For the ladies that’s doing research I lived in Indonesia in the 60s. Maybe that’s where I got it. Anyway that’s my story. Having a second CAT scan in another three weeks. Hope you all are getting better and better.
sounder27
@sounder27
@sounder27
Posts: 98
Joined: Jan 11, 2019
@windwalker @sounder27, chatty2, and @rits Hi girls. I am collecting data to hopefully submit it for studies in the future. I do not think anyone, anywhere; is gathering what I have. My findings so far, are that a great majority of mac infected women worked in the medical field (many were nurses). Second to medical, is the teaching field. Lots and lots of teachers are mac infected. What the two have in common are that both of those career fields expose you to a lot of people and a lot of germs. The other thing that comes to mind is that most women of menopause age get this, and you hear of very few men getting it. Is this disease driven by the lack of testosterone? Before menopause, we all had some testosterone in us. Maybe that is the protective link?? I collect data on localities to see if more places are becoming 'hotbeds' for mac. I ask about travel to see if there is any correlation there. Thank you for contributing that info I hope it helps us some day.
Windwalker. I have a client whose kitchen and bath I designed, who showed me a picture of her friend in Korea who was diagnosed with Mac. It’s ubiquitous!
Ethan McConkey, Moderator
@ethanmcconkey
@ethanmcconkey
Posts: 741
Joined: Jul 31, 2018
@bibes Hi I am 85 years old and was diagnosed five years ago when I had pneumonia. But Mac was
suspected isix years before that but couldn’t get a good test. Six months ago they found I had nodules in my lungs. My only symptoms are tiredness tiredness tiredness. Not every day. And I still walk 2 miles a day. There is no way I would be treated with those three anabiotic’s. For the ladies that’s doing research I lived in Indonesia in the 60s. Maybe that’s where I got it. Anyway that’s my story. Having a second CAT scan in another three weeks. Hope you all are getting better and better.
Hi @bibes and welcome to Connect. Your extreme tiredness must so frustrating.
I wanted to introduce you to @jammer, @sounder27, and @windwalker as they have experience with MAC and may be able to offer you support.
Back to you @bibes, you mentioned that you would not be treated with those antibiotics. Why is that the case?
@ethanmcconkey Hi @bibes and welcome to Connect. Your extreme tiredness must so frustrating.
I wanted to introduce you to @jammer, @sounder27, and @windwalker as they have experience with MAC and may be able to offer you support.
Back to you @bibes, you mentioned that you would not be treated with those antibiotics. Why is that the case?
I wouldn’t take those antibiotics the three because of the terrible side effects or possible side effects. Like losing your eyesight and or your hearing being sick which I’m not right now and even if I were I would risk that. Plus it is my understanding that only 60% of those who take these drugs are cured. And 10% the Mac comes back. And at my age it certainly isn’t worth it. As for my tiredness I have good days and bad days. Thank you for your interest.
alleycatkate
@alleycatkate
@alleycatkate
Posts: 216
Joined: Mar 12, 2018
@bibes I wouldn’t take those antibiotics the three because of the terrible side effects or possible side effects. Like losing your eyesight and or your hearing being sick which I’m not right now and even if I were I would risk that. Plus it is my understanding that only 60% of those who take these drugs are cured. And 10% the Mac comes back. And at my age it certainly isn’t worth it. As for my tiredness I have good days and bad days. Thank you for your interest.
@bibes…I read your response and wondered how you had stolen my thoughts and words. My exact sentiments!! What might be of interest to you that I recently learned….is there can be a natural conversion of MAC. And, I believe I read somewhere, upwards of possibly 40% of MAC patients just have it "go away". Someone, please correct me if I have that wrong. That gives great hope…in the meantime while hoping for this, keep your lungs clean. There are some natural proactive practices that you might look into. Are you nebulizing a 7% solution of saline? It helps you cough up the junk in your lung. Talk to your Dr about it. Also, there is an herbal remedy that many on this site take called Clear Lungs by Ridgecrest Herbals. It is the extra strength formula in the Blue bottle. It is a compound of Chinese Herbs for keeping the airways clear. I take one a day. I also take NAC which is great for the lungs. Here is a link for info on NAC for the lungs. https://universityhealthnews.com/daily/nutrition/nac-benefits-helps-lung-problems-addictions-autism-bipolar-and-more/
I am hoping with this preventative care that my MAC will stay stable or even convert. The last and maybe most important thing that I have learned from my Dr at Mayo….If you have acid reflux and it may be silent, fluids could be aspirated into the lungs. Sleep on a wedge and do not drink or eat 3 hours before bed. We are both fortunate that we are pretty much asymptomatic. I am tired, tired, tired also and sometimes have excess phlegm and what appears to be sputum with infection…little balls of colored phlegm…and sometimes Short of Breath. That is it so far. Anyway…Just wanted to put in my two cents to someone with the same mindset as me. I really do not think I would ever entertain the big 3 under any circumstances. I say that not having some of the difficult issues that many on this site experience. I wish for us all to regain our health and feel better…I hope the same for you, Bibes…Good luck…and sorry if I am too verbose, I can't help it. haha. Best, Kate
Liked by pfists
@alleycatkate @bibes…I read your response and wondered how you had stolen my thoughts and words. My exact sentiments!! What might be of interest to you that I recently learned….is there can be a natural conversion of MAC. And, I believe I read somewhere, upwards of possibly 40% of MAC patients just have it "go away". Someone, please correct me if I have that wrong. That gives great hope…in the meantime while hoping for this, keep your lungs clean. There are some natural proactive practices that you might look into. Are you nebulizing a 7% solution of saline? It helps you cough up the junk in your lung. Talk to your Dr about it. Also, there is an herbal remedy that many on this site take called Clear Lungs by Ridgecrest Herbals. It is the extra strength formula in the Blue bottle. It is a compound of Chinese Herbs for keeping the airways clear. I take one a day. I also take NAC which is great for the lungs. Here is a link for info on NAC for the lungs. https://universityhealthnews.com/daily/nutrition/nac-benefits-helps-lung-problems-addictions-autism-bipolar-and-more/
I am hoping with this preventative care that my MAC will stay stable or even convert. The last and maybe most important thing that I have learned from my Dr at Mayo….If you have acid reflux and it may be silent, fluids could be aspirated into the lungs. Sleep on a wedge and do not drink or eat 3 hours before bed. We are both fortunate that we are pretty much asymptomatic. I am tired, tired, tired also and sometimes have excess phlegm and what appears to be sputum with infection…little balls of colored phlegm…and sometimes Short of Breath. That is it so far. Anyway…Just wanted to put in my two cents to someone with the same mindset as me. I really do not think I would ever entertain the big 3 under any circumstances. I say that not having some of the difficult issues that many on this site experience. I wish for us all to regain our health and feel better…I hope the same for you, Bibes…Good luck…and sorry if I am too verbose, I can't help it. haha. Best, Kate
Thank you so much alley cat Kate. By the way I love your name. I have a cat name Apple. And a dog named Raffles. What would we do without them? Thank you for all your information I’m going to try it all. And I’m going to talk to my doctor about them. I really appreciate it thank you
@sounder27
In reply to @windwalker
Windwalker. Hello Terri, I called Mayo Pulomonary again today and they were much more accommodating and told me to call every day at 9 my time to check for any cancelations. I felt much more positive about getting an eventual appointment. Just wanted to share.