Just started a week ago the big three and feel so very sick

Posted by justaussie @justaussie, Sep 27 1:54pm

Hi everyone, I finally started the meds. Terrified for the side effects and to be honest feel completely depressed and sad. I feel so very sick. I've started taking the meds at night before bed as can't tolerate how sick I feel during the day. The next morning feel marginally better but have this vile sick taste in my mouth all day like I want to vomit. I started a probiotic yesterday hoping it will help. I don't know how I'm going to tolerate this long term. I have mild/moderate Mac at present - but have a 4.5cm (or possibly bigger now since ct scan in June) and quite frankly my symptoms were far easier to cope with than these meds. Can anyone tell me what they are taking/using to help alleviate the sick feeling? I really don't think I can take these long time feeling like this. With no quality of life - what's the point. Sadly I'm 59 and would like to be around for awhile but not if life is miserable. Feeling devastated.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

lilianna | @lilianna | Oct 5 6:13pm

In reply to @laborday24 "Wow. That is good. How many days did you stay" + (show)

Three total- one day tests and seeing dr Griffith. I never feel well there- the altitude affects my breathing so we leave as soon as possible.

laborday24 | @laborday24 | Oct 5 6:33pm

In reply to @lilianna "Three total- one day tests and seeing dr Griffith. I never feel well there- the altitude..." + (show)

Ohhh that sucks. Sounds like an expense. Thanks for getting back to me so quickly. I will let you know how things go with me. 🙏🙏

bayarea58 | @bayarea58 | Oct 5 8:19pm

In reply to @laborday24 "I just found out from my sputum test that my Mac is worse I go to..." + (show)

@laborday24 How do you know from the sputum sample that the MAC has "gotten worse"? Were your sputum samples clear before, and now they are showing signs of MAC again? Or were your sputum samples smear negative before and now they are smear positive? I am new to the MAC diagnosis and just trying to learn as much as I can about all the various aspects. Thanks.

laborday24 | @laborday24 | Oct 5 9:22pm

In reply to @bayarea58 "@laborday24 How do you know from the sputum sample that the MAC has "gotten worse"? Were..." + (show)

Well I took meds for two years no issues drug resistant to azithromycin. I went off them in May because we thought azithromycin was causing me headaches. I had 3 negative tests in the beginning. Now they are all positive. I did a sputum test September 23 for national Jewish health. My contact there said it grew fast. I go there in November. She said they can help me. I am praying they can help. But i don’t think it ever goes away. I cough 24/7. Doing compression vest and nebulizer. I also have bronchectisis

bayarea58 | @bayarea58 | Oct 5 10:25pm

In reply to @laborday24 "Well I took meds for two years no issues drug resistant to azithromycin. I went off..." + (show)

I see, so you were clear from May to September, and now positive again. Frustrating. Again, I am new to all of this but National Jewish Health Center seems to be an excellent facility and I trust they will be able to give you the best advice on next steps. I have been reading about protocols for recurrence/reinfection and there are definitely tools to help you fight this. Sorry to hear about the 24/7 cough, that must be equally frustrating. Do you find the compression vest productive? My pulmonologist mentioned it last appointment but I am just starting to nebulize and it all seemed a little much to take on all at once, so I told her I would get back to her on the vest. I also am starting a pulmonary physio program soon and wanted to ask them what they thought about the different airway clearance options for me. My issue is I have little to no cough - just an occasional dry cough - with no sputum production. Even nebulizing I am dry, dry, dry. And yet my CT shows mucus impaction. Grrrrr. How do I get that dang mucus out!!! Anyway, best of luck to you at National Jewish Health Center. I have faith they will get you on a successful path forward.

laborday24 | @laborday24 | Oct 5 11:09pm

In reply to @bayarea58 "I see, so you were clear from May to September, and now positive again. Frustrating. Again,..." + (show)

I didn’t want to do vest at first my copay is 150 a month. It helps plus nebulizer. My cough is dry sometimes but also get mucus. I just worry that since I went off meds in may it made things worse but the other thing is being on antibiotics for that long cannot be good either I have ct scan middle of October. I am sure it will not be encouraging. 😞

debregecz | @debregecz | Oct 11 8:53am

In reply to @justaussie "Thank you. It's horrible as you know well. Will get some ginger tea and ginger candy..." + (show)

I agree with using probiotics. I prefer drinking a bit of Kefir (flavored liquid yogurt) throughout the day (yes, I swig out of the bottle!) I have been on Azithromycin and Ethambutol for 6 months now. I also nebulize with either a Placebo or Amikacin (Clinical study). Anxiety and being tired are my worst daily symptoms, thank fully I seem to be tolerating the drugs. I have stopped losing weight and homemade soup, salads, eggs, tuna fish and cereal are my main diet along with trying NOT to eat anything with preservatives. I switched from coffee to decaffeinated Green Tea. I have read that Lemon Drop hard candies help. It does get better, and the forums are helpful.

lvnl | @lvnl | Oct 12 10:54am

I am also on either Arikayce (amikatcin) or placebo, Azithromycin and Ethambutol (Encore Arikayce study). I am using florastor probiotics - recommended by my gi doc. Only (or one of very few) probiotics established thru clinical studies to help keep intestinal flora in shape with antibiotic treatment.
I also had only mild bronchiectasis and MAC symptoms and while I'm tolerating treatment well physically so far, it is super time- and energy-consuming so in that sense the treatment is more overwhelming than the disease but I definitely want to treat before it progresses and not after! Any of us of a certain age or having other immune etc conditions are at high risk for progression and worse permanent damage.
Anyone just starting on this road and in shock: give yourself time, you will sort out what works best for you to have quality of life vs disease dominating everything!
This group is a tremendous help!

pfurcht123 | @pfurcht123 | Oct 14 3:38pm

Hello to all. Just responding to the person who is new to the Antibiotic treatment. I too felt terrible initially...such fatigue and tummy problems. three months in , that has diminished, i experienced and still am working to resolved anxiety and depression. Although my ID Dr said, " that would be very very rare.....the anxiety and depression coincided with the start of medication. Also when I explored the side effects, that could be one of them. so my message to you is , keep going, it will get easier.also I am on Ethambutol, Azythromycin and Rifabutin.....I thought mine was the standard protocol. Is there a reason why they have you on the blind study without the Rif? but instead the Arik?

saravb | @saravb | Oct 15 9:20am

I find taking the antibiotics with food helps. The azythromycin in tablet form does not need to be taken on an empty stomach. I drink Kombucha, and take psyllium seed caps (20), and space the antibiotics out through the day. I now notice not much difference between mon-wed-fri and the days i don't take the antibiotics. Hope you can some way to lessen the symptoms.