How To Cope With Longterm Antibiotics For COPD/BRONCHIECTASIS

[deenyweeny]

My doctor has told me that because my lung infection, macrobacteria) has gotten worse, I will have to take a course of antibiotics for 18 months (I've lost a lot of weight because of it). I haven't started it yet (will see him in another week) so was wondering if this has happened to anyone else and what to expect.

[peege]

Hi I believe there are members who take antibiotics long term. Hopefully they'll be along soon. I only take them on 3 days per week for 6 months of the year, during that time take a 20 billion prebiotic daily to put some good bacteria in to my gut. P

[deenyweeny in reply to peege]

Thanks for the reply. I've been very scared about this because I've never been put on longtime antibiotics before, and I read that there are side effects. The prebiotics idea sounds like a good one so I'll probably try it. Will discuss that with my endocrinologist as well as the pulmonologist.

[Jonn54 in reply to deenyweeny]

Hi deenyweenyTry not to worry about long term a/b I have been taking doxy 100mg every day now for two years. Hoping when I see consultant in April I can stop for a while. I can say I've had very few chest infections since

Taking these and no side effects

So I shouldn't worry too much

All the best

[deenyweeny in reply to Jonn54]

Glad you've had good results. Think I'll have to take more than one antibiotic, but, will do the best I can. I appreciate your input and hope your better health continues.

[Pwkav1]

Hi, i had antibiotics for 3 years for HIB. It took over my left lung and produced loads of green phlegm and coughing everyday. Im long time asthmatic with allergies. Was put on Azithromycin and i have a new lease of life. No more coughing and my HIB is now gone. Did have stomach issues but outweighed my chest problems. Hope this helps, and good luck. Karen. Xxxx

[deenyweeny in reply to Pwkav1]

Glad to know you've had positive results, and hope it continues. Thanks.

[B0xermad]

Hi deenyweeny,I have been on azithromycin for 5yrs for bronchiectasis and it has been a revelation with rarely any flare ups these days,also rescue amoxicillin in the cupboard for instances during the winter months .

[Hidden]

Are you talking about treatment for an NTM infection, sometimes referred to as mycobacteria? Other members have replied as if you mean just bog standard prophylactic (preventative) antibiotics, but I read your post to mean you have an active infection that’s made you lose weight and have been told you’ll need 18 months of specific treatment for it. That’s usually only the case where mycobacteria are the culprit. As a group they are difficult to treat, but not impossible, and usually require at least a couple of different antibiotics for 12 months or more depending on which particular one is involved in the infection. There are a couple of members floating about that are receiving ongoing treatment for NTM.

[deenyweeny in reply to Hidden]

Yes, I am talking about an NTM, or MAC infection. I'm an optimist, so even though I've had it for 6 years, I thought it wouldn't get worse, but it did. Glad to know I will feel better and prevent things from getting worse. Thanks.

[Clareyg]

Hi, I take four different types of ABs every day and have done this since August 2020. For the first few weeks it was 5 different types but one was stopped. Three of these are to treat MAC which is a mycobacterium which looks like what you have although you might have a different variety to the one I have. These ABs are known as the Big Three so I am told and are used as the first line therapy for MAC. They do have side effects but the consultant keeps a watching brief - they monitor bloods to keep an eye on liver and kidney function etc and they can impact on hearing and eyes but that’s very rare. I’ve found the improvement in my lungs outweighs the negative aspects and you may feel a bit ropey for the first couple of weeks and that eases off pretty quickly and then it’s just a new habit to get into. It’s certainly made me feel a lot better and I hope it does for you to. Good luck.

[deenyweeny in reply to Clareyg]

Thanks. Your information has already made me feel better.

[bwp91]

There’s good info on the BLF website. Good luck!

[jennycherrie]

Hi deenyweeny. I also have a mycobacteria infection and began my treatment last October. I have to take the three antibiotics for two years and have regular blood tests to check liver & kidney function. I also had a sight & hearing test at the start of treatment because these can be affected by the antibiotics. It was daunting when I was advised to have the treatment but I didn’t want the bacteria to colonise my lungs or cause any more permanent damage. As someone else has said, the first week was rough on my stomach but I tweaked how I took the antibiotics and that soon passed. Five months in and so far so good. Hope this helps. Good luck 😊

[deenyweeny in reply to jennycherrie]

Thanks so much for sharing your story. I was shocked to be told how bad my infection is and dreaded the treatment, but you've made it sound more hopeful. I've been feeling so tired and discouraged because I need and want to so many things but don't feel well enough to do them. My daughter is coming in about a week and will take me to St. Simons Island to live near or with her. I think it will be the right thing for me, but I'll miss my home here, and I still have to prepare the house for sale----so will return several times to do things. Hoping the meds will make me feel better.

[Beth1949]

I've been on a long term low dosage of Azithromycin for over 4 years (250mg every other day). I think it has helped. I have not had a bad lung infection since being on it.

Beth