1. < MAC & Bronchiectasis

Newly Diagnosed: Big 3 Side Effects Questions

Posted by phayslip @phayslip, Jun 25, 2019

Hello, All!

Like many of you, after a multiple years long process of chasing symptoms, which included heart caths, many different kinds of scans, and many different kinds of doctors, I was finally diagnosed by a pulmonologist with Bronchiectasis, Multiple Lung Nodules, and MAC/MAI in April 2019. After reading through most of the posts here, I can see that I was following the same sort of trajectory that many of you did. For a long while, my pulmonologist insisted that the symptoms I was experiencing were out of proportion to my "mild" bronchiectasis and nodules. After a year or so, she finally did cultures, and my cultures grew within 18 days (rather than the 6-8weeks she warned me it might take). Part of her delay in doing the cultures was my age (53), which she originally thought on the young side for something like a MAC/MAI diagnosis. Anyway, here we are.

I started the Big 3 (azithromycin, ethambutol, rifampin) May 1st, 2019. Prior to starting, I had my eyes and skin checked... no other checks. I was nervous about it because I had already been through many rounds of various antibiotics due to the ongoing cough, "bronchitis", "possible pneumonia", "respiratory infection" and other illnesses I'd been having, and without fail, my stomach rebelled. I was pretty pleased that the first month was uneventful. Midway through June, I have started having some ongoing stomach issues, and my pulmonologist has requested that I visit my GI doc to make sure things are ok in that area before we make any changes.

In the meantime, tinnitus I was already experiencing seems to have doubled (if that's possible), so she has also requested that I see an ENT. I've seen an ENT before about the tinnitus which began years ago, and was told there's nothing that can be done about it. So am I now stuck with even LOUDER and more persistent tinnitus?! Yikes.

The pulmonologist also told me that the main vision concern was color vision changes. But I'm pretty sure I am having acuity changes. I mentioned this to the pulmonologist at my check up, and she suggested that I get my vision Rx re-checked in case something is out of whack there (I did have a Rx change at the vision check prior to starting meds). I'm going to get my vision rechecked in case it IS the RX, but the vision question is, have any of you also had acuity issues on these meds? Or is it really just a color change if there is a change? I haven't had any problem with color.... so far.

Naturally, I am also experiencing some psychological challenges since diagnosis. The thought of dealing with multiple parts of cruddy health for the next 30-40 years is overwhelming. I try to take it a day at a time, but when you just don't have the energy to do anything at all, it hardly seems worth it. My situation is a little complicated by the fact that I am a kidney donor (2008), and with only one kidney, there are additional hoops to jump through pharmaceutically (things I can't take.... most notably NSAIDS.... I'd give my remaining kidney for an NSAID some days!) I have missed a ridiculous amount of time with my grandchildren because I'm just too tired, or sick some days, to keep up with them.... I always imagined myself as the Active Grandmother when that time came since I was a super active mom (it's frustrating that it's not working out that way). AND all of this treatment, and doctor visiting is very expensive. I'm still trying to go to work every day; some days it's very difficult.... but I definitely NEED to keep working.

My question for those of you who have been on the Big 3 for multiple years is, does it ever get easier? Do the drugs finally just seem like no big deal? I am noticing that I THINK my cough is a little better for the first time in years (there seems to be less coughing), but when it hits, it hits just as hard. I'm certainly not giving up after only a couple of months, but I guess I need a little more "hand holding" than I thought I did.

Thank you in advance for any words of wisdom, or thoughts, you send my way. I'm happy to answer questions if I've left something out that seems important!
Peyton

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 25, 2019

@phayslip Hello Peyton. I am no medical expert, but, I believe that if you are experiencing tinnitus and visual problems, you should probably discuss changing your medications. Do you have a copy of the lab results from your sputem test? Do you have the results of the susceptibility tests? On the latter, were you tested for suseptibility to ciprofloxacin or doxycycline? How about tobramycin or Arikayce? The inhalables are the way many are going now. Which of the Big 3 are you taking now?

REPLY
phayslip | @phayslip | Jun 25, 2019

Hi, Terri,

I don't have a copy of the sputum test, but I can get it. I don't think my doctor did the susceptibility test as I was having very severe symptoms and she wanted me to get going on the Big 3 immediately. I'm on Azithromycin, Rifampin, and Ethambutol. I'm not taking any inhalables right now, although she does have me on Breo Ellipta, and an emergency inhaler for the Bronchiectasis.

Thank you for your response!
peyton

REPLY
Jo Ann K | @jkiemen | Jun 26, 2019

@phayslip I feel so badly you are going through this. I understand the emotional, mental aspect. I had a period of nausea that lasted for several months but generally have been OK.. I have tried several different Probiotics and eat Yogurt daily. I am having more urinary effects recently. Not sure if anyone else has had that on the Big 3. If the cough is improving, hopefully you can stay on the meds. Let us all continue to pray for research that is coming down the pipeline to get funding and approval

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 26, 2019

Hi Peyton,
You are right - your journey sounds like what a lot of us have been through. My daughter is even younger than you - 39 - and has bronch, a diagnosis that took years. Her docs are looking for a genetic component, because she is the 3rd known generation in my family.
Susceptibility tests for your MAC are a must, else you are putting yourself through this medication torture with a chance it might not do any good. But the doc may just have started the typical regimen while waiting for the susceptibility results, which take at least 2 months. Definitely revisit the vision and hearing with the eye & ear docs. These should also be scheduled regularly throughout your treatment. As for the GI issues, I recommend a good probiotic supplement to help - not perfect, but better than nothing.

As for the future:
First and foremost, as the infection is brought under control by the meds, you should get energy back. In my view, the trick is to be as active as you can, even if you have to push through the fog/sluggishness.

Yes, bronch & MAC are lifelong conditions, but so is diabetes, rheumatoid arthritis, kidney disease... Every one of us will have health concerns as we age, the key is to manage them in such a way as to live your life to the fullest. That means saving your energy for the things most important to you, and letting other things go. It sounds like your two main concerns are needing to continue to work, and being able to do things with your grandchildren. To focus on those, you may need to let other things go - maybe gardening, cleaning, church or other volunteer activities, ... need to be pared back or turned over to someone else. Shopping is an area that is easier then you might think to save energy - take advantage of the numerous on-line ways to shop, even including ordering groceries for delivery or curbside pickup (maybe on the way home from work.) Ask your kids for help - maybe play with your grandkids (even a board game or read to them) while their parents clean your house, do laundry, yardwork or chores for you - like you would help them if they needed it. If your home is too much to care for, consider downsizing to something more manageable.

Above all, if fear and anxiety are crippling you, get a little counseling - dealing with a long-term chronic condition is stressful, and gaining some insight and tools to help yourself can be a lifesaver.

Good luck to you as you undertake this journey. Keep living your life to the best of your ability and bring your concerns back to the group.

REPLY
2 replies
irene5 Irene Estes | @irene5 | Jun 26, 2019
In reply to @sueinmn "Hi Peyton, You are right - your journey sounds like what a lot of us have..." + (show)
@sueinmn

Hi Peyton,
You are right - your journey sounds like what a lot of us have been through. My daughter is even younger than you - 39 - and has bronch, a diagnosis that took years. Her docs are looking for a genetic component, because she is the 3rd known generation in my family.
Susceptibility tests for your MAC are a must, else you are putting yourself through this medication torture with a chance it might not do any good. But the doc may just have started the typical regimen while waiting for the susceptibility results, which take at least 2 months. Definitely revisit the vision and hearing with the eye & ear docs. These should also be scheduled regularly throughout your treatment. As for the GI issues, I recommend a good probiotic supplement to help - not perfect, but better than nothing.

As for the future:
First and foremost, as the infection is brought under control by the meds, you should get energy back. In my view, the trick is to be as active as you can, even if you have to push through the fog/sluggishness.

Yes, bronch & MAC are lifelong conditions, but so is diabetes, rheumatoid arthritis, kidney disease... Every one of us will have health concerns as we age, the key is to manage them in such a way as to live your life to the fullest. That means saving your energy for the things most important to you, and letting other things go. It sounds like your two main concerns are needing to continue to work, and being able to do things with your grandchildren. To focus on those, you may need to let other things go - maybe gardening, cleaning, church or other volunteer activities, ... need to be pared back or turned over to someone else. Shopping is an area that is easier then you might think to save energy - take advantage of the numerous on-line ways to shop, even including ordering groceries for delivery or curbside pickup (maybe on the way home from work.) Ask your kids for help - maybe play with your grandkids (even a board game or read to them) while their parents clean your house, do laundry, yardwork or chores for you - like you would help them if they needed it. If your home is too much to care for, consider downsizing to something more manageable.

Above all, if fear and anxiety are crippling you, get a little counseling - dealing with a long-term chronic condition is stressful, and gaining some insight and tools to help yourself can be a lifesaver.

Good luck to you as you undertake this journey. Keep living your life to the best of your ability and bring your concerns back to the group.

Jump to this post

That is excellent advice!

REPLY
phayslip | @phayslip | Jun 27, 2019
In reply to @sueinmn "Hi Peyton, You are right - your journey sounds like what a lot of us have..." + (show)
@sueinmn

Hi Peyton,
You are right - your journey sounds like what a lot of us have been through. My daughter is even younger than you - 39 - and has bronch, a diagnosis that took years. Her docs are looking for a genetic component, because she is the 3rd known generation in my family.
Susceptibility tests for your MAC are a must, else you are putting yourself through this medication torture with a chance it might not do any good. But the doc may just have started the typical regimen while waiting for the susceptibility results, which take at least 2 months. Definitely revisit the vision and hearing with the eye & ear docs. These should also be scheduled regularly throughout your treatment. As for the GI issues, I recommend a good probiotic supplement to help - not perfect, but better than nothing.

As for the future:
First and foremost, as the infection is brought under control by the meds, you should get energy back. In my view, the trick is to be as active as you can, even if you have to push through the fog/sluggishness.

Yes, bronch & MAC are lifelong conditions, but so is diabetes, rheumatoid arthritis, kidney disease... Every one of us will have health concerns as we age, the key is to manage them in such a way as to live your life to the fullest. That means saving your energy for the things most important to you, and letting other things go. It sounds like your two main concerns are needing to continue to work, and being able to do things with your grandchildren. To focus on those, you may need to let other things go - maybe gardening, cleaning, church or other volunteer activities, ... need to be pared back or turned over to someone else. Shopping is an area that is easier then you might think to save energy - take advantage of the numerous on-line ways to shop, even including ordering groceries for delivery or curbside pickup (maybe on the way home from work.) Ask your kids for help - maybe play with your grandkids (even a board game or read to them) while their parents clean your house, do laundry, yardwork or chores for you - like you would help them if they needed it. If your home is too much to care for, consider downsizing to something more manageable.

Above all, if fear and anxiety are crippling you, get a little counseling - dealing with a long-term chronic condition is stressful, and gaining some insight and tools to help yourself can be a lifesaver.

Good luck to you as you undertake this journey. Keep living your life to the best of your ability and bring your concerns back to the group.

Jump to this post

@sueinmn Thank you so much for your thoughtful reply. I will ask my doctor if susceptibility testing has be, or will be done. I visited my eye and ENT docs yesterday. The vision issue I am having is due to an overcorrected lens. Thank goodness! New lenses have been ordered. The ENT doctor was less helpful. He was unsure whether the increased tinnitus was due to the meds (but "they might be the cause"), and he decided to do another check in 3 months. His less than helpful response: "you may need to get a better attitude about it.... you might get used to it." Hmmmmm. I've had the tinnitus for 5+ years, and now it has increased to a million cicadas on a too hot summer day... pretty sure I won't "get used" to that..... but I'll try to get "a better attitude" about it. (Bless his heart.) I'll see the eye doc in a couple of months to re-check color vision.

I have thought about counseling for the anxiety, but I think I'm beginning to get a better grip on it. I am aware that so many people have much bigger problems than I do, and that if I keep at these meds, I may be much better in a year's time. I think the shock of finally having a diagnosis hit me hard, and the reality of it set in. I'm THRILLED to have a diagnosis. I know many of you can relate to that after years of feeling crummy.... I just didn't expect the additional layer of the "cure" making me feel worse for a time. No one else in my family has this, as far as I know, so I am very glad to have found this community for some support.

I guess more than anything, the energy challenge has bothered me. I'm fine to take pills regularly (I already do that for other things), but the pure exhaustion I've been feeling for so long is disheartening. I am already becoming an expert at saving my energy for the things that matter (made it to my granddaughter's 1st birthday, yay me!!! This is in contrast to being too ill to make it to my grandson's 1st birthday 3 years ago).... but, as you know, sometimes "saving energy" leads to: "I'll just start over tomorrow, I can't make it out the door today." It's hard to push through that.... but I'm trying! I promise.

Thanks again, to you, and to others who may read this. I'm not a fan of "whining", but I HAD to get some of this stuff out.... Invisible Illnesses are difficult to explain to others, and now that my cough is somewhat better, people I've tried to discuss it with have looked at me sideways.... I SOUND okay.... I LOOK okay.... I'm not okay.... yet. Thanks for listening to me go on for just a bit.

REPLY
Jo Ann K | @jkiemen | Jun 27, 2019

@phayslip I was hit hard with the diagnosis and after every scan as far as emotional issues and worry. I decided not to add additional medication to treat that as I feel I already have so much in my system. Communicating with others here does help that.

REPLY
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