rits
@rits
@rits
Posts: 26
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
ling123
@ling123
@ling123
Posts: 341
Joined: Apr 06, 2017
@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
@alleycatkate Thanks for sharing the information. I wasn't aware of the MAC natural conversion. But my case may just fit the bill. When I was initially diagnosed with MAC and bronchiectasis, I had just coughed up huge amounts of blood out of the blue. I had been very healthy up till then and there was no indication that this would happen to me, except that I was chronically coughing up sticky mucus. The latter was determined to be the result of bronchiectasis, which is incurable but not life-threatening. After I came out of ER, I stopped coughing up blood and have not done so for almost 5 years. My health has been good. I eat well and am active physically. For that reason, I didn't see any reason to go on a drug treatment out of the same concern as others that they might do more harm than good to my body. My pulmonologist agreed with me. I have been very happy with my decision because I continue to be healthy and active with no indication of MAC worsening. I figure as long as I'm able to live a normal life, I can do without the drugs.
Liked by alleycatkate
alleycatkate
@alleycatkate
@alleycatkate
Posts: 215
Joined: Mar 12, 2018
@bibes Oh I do have one question. Where do you get 7% Celine. I guess I could ask them at the target.
It is a simple 7% saline solution but you need to get a prescription for it from your Dr along with the nebulizing equipment. Most here do it twice a day. I just go once.
@alleycatkate It is a simple 7% saline solution but you need to get a prescription for it from your Dr along with the nebulizing equipment. Most here do it twice a day. I just go once.
Thank you Kate.
Liked by alleycatkate
alleycatkate
@alleycatkate
@alleycatkate
Posts: 215
Joined: Mar 12, 2018
@ling123 @alleycatkate Thanks for sharing the information. I wasn't aware of the MAC natural conversion. But my case may just fit the bill. When I was initially diagnosed with MAC and bronchiectasis, I had just coughed up huge amounts of blood out of the blue. I had been very healthy up till then and there was no indication that this would happen to me, except that I was chronically coughing up sticky mucus. The latter was determined to be the result of bronchiectasis, which is incurable but not life-threatening. After I came out of ER, I stopped coughing up blood and have not done so for almost 5 years. My health has been good. I eat well and am active physically. For that reason, I didn't see any reason to go on a drug treatment out of the same concern as others that they might do more harm than good to my body. My pulmonologist agreed with me. I have been very happy with my decision because I continue to be healthy and active with no indication of MAC worsening. I figure as long as I'm able to live a normal life, I can do without the drugs.
@ling123 …Me too, Ling. Initially, l got pneumonia…and I coughed up blood which led to the detection of MAC and Bronchiactasis. So far, so good. Hope the same for you. Sounds like you are paying good attention to food and exercise also. I think if all went to hell in a handbasket, I would opt for an herbal approach. Fingers crossed for us, one and all. 🙂
Liked by ling123
beatitnow
@beatitnow
@beatitnow
Posts: 48
Joined: Feb 25, 2017
@hydrang3a @rits….don’t worry about Arikayce……I’ve been taking it daily since November 12 along with the big 3 and no adverse side effects….a slight sore throat at first but this delivery system is so much better for us than other forms of amikacin…..I had been receiving amikacin through an IV before I started Arikayce and that did make me dizzy….and weak. I thank God I don’t need to have that drug in my bloodstream anymore.
@hydrang3a, how long do you expect be using the Arikayce? Did yours clear, but you are waiting the year after the first negative sputum sample? If yours cleared, how long did it take? Thanks for your help. I am going to be starting the process soon.
Liked by Terri Martin., Volunteer Mentor
beatitnow
@beatitnow
@beatitnow
Posts: 48
Joined: Feb 25, 2017
@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!
Liked by Terri Martin., Volunteer Mentor
beatitnow
@beatitnow
@beatitnow
Posts: 48
Joined: Feb 25, 2017
To everyone…I have been on the Big 3 for a little over 2.5 years. Have any of you experienced any side effects to your body? I now have Hashimoto's Thyroid, tons of food sensitivities, and I have been experiencing some vibrations in my legs while sleeping. I am only 48 years old. I am curious what you all have experienced with the meds. Thank you!
Liked by Terri Martin., Volunteer Mentor
hydrang3a
@hydrang3a
@hydrang3a
Posts: 37
Joined: Jul 11, 2018
I believe I will be on Arikayce until the end of this year. I still have a 2cm abcess we are hoping will shrink. Feeling better though as I continue big 3 for over a year now. Would love to know if Arikayce destroyed anyone else’s abscess or cavities.
Liked by Terri Martin., Volunteer Mentor
heathert
@heathert
@heathert
Posts: 532
Joined: Mar 07, 2016
@hydrang3a I believe I will be on Arikayce until the end of this year. I still have a 2cm abcess we are hoping will shrink. Feeling better though as I continue big 3 for over a year now. Would love to know if Arikayce destroyed anyone else’s abscess or cavities.
@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
Liked by Terri Martin., Volunteer Mentor
beatitnow
@beatitnow
@beatitnow
Posts: 48
Joined: Feb 25, 2017
@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
@heathert, did you have any side effects from being on the Big 3 for 3 years? Thanks!
@beatitnow To everyone…I have been on the Big 3 for a little over 2.5 years. Have any of you experienced any side effects to your body? I now have Hashimoto's Thyroid, tons of food sensitivities, and I have been experiencing some vibrations in my legs while sleeping. I am only 48 years old. I am curious what you all have experienced with the meds. Thank you!
I was told the side effects maybe individual dependent. After about one year treatment (3 antibioticsx3d/wk), I had vision loss due to Ethambutol. My vision has improved a bit now, two months after stopping the med. I'm taking thyroid hormone and its absorption was decreased by rifampin. During the treatment the dosage of thyroid hormone was increased ~4 times. Now I'm in the course of the opposite adjustment. Lost about 10 pounds and developed some skin sensitivity. Did you discuss it with your doc? Maybe he or she could give you some suggestions. Good Luck!
Liked by Terri Martin., Volunteer Mentor
heathert
@heathert
@heathert
Posts: 532
Joined: Mar 07, 2016
@beatitnow Unfortunatly I have been on the big 3 3x week and daily for around 5 years now, yes side effects, mainly tiredness and reflux. I am going off the big 3 in a few months and am looking forward to it as far as side effects but also a bit scared the bugs could return. I did have food sensitivities for a while but not now, never sure if its menopause, MAC or the meds. I hope they can get you sorted soon with your nasty side effects soon. The only advice I can give is eat well and exercise as much as you can.Take care and let us know how you are doing. Heather
Liked by Terri Martin., Volunteer Mentor
@alleycatkate
@bibes. You are so welcome. I would be lost without my animals! At one point when I did cat rescue…I had a few fruity cats in the mix. (haha) Grape, and Melon were certainly cherished kitties. Sending Chin scratches to the Apple of your eye! (and Raffles too) Kate