Have to start the big three

Posted by Jo Ann K @jkiemen, Nov 28, 2017

I just got the results of my CT done yesterday. There are now enough changes that I am being asked to start the Big three. I have an eye exam tomorrow and then I guess I start. I really don’t cough much mostly feel like I have junk in the back of my throat only. Sputum inductions have not been successful so it will be hard to see if there is any improvement. I am really sad that I am advanced now to this stage. Many of you have already been there and beyond. Please share any advice on tolerating the medications.
JoAnn K

@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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It seems that just the process of taking antibiotic has made me feel like an invalid. I am afraid of being around anyone that is coughing or sneezing. Afraid of getting a GI virus that seems to go around so often this time of year and now I hear the Flu Shot has missed the mark again this year. I feel like I need to be in a bubble.

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@jkiemen

They took me off Rifabutin and put me on Rifampin, which I am tolerating better. I do feel that I get tired quickly on the Antibiotics. Have you all be taking them 3 times a week? I have been trying to space them so there is not such a big gap when there are 2 days without such as if I take them on Monday, Wed and Friday. I feel like I don’t want my levels to fall to low by Sunday. Maybe I am worrying too much.

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@jkiemen I took them every day and yes, they made me tired. I would often nap in the afternoon and I am NOT a napper and I’d be in bed by 8:30 every night.

Liked by tdrell

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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@jkiemen , I know the feeling. I lived like a shut-in for a long time. I am feeling so much better these days; that I am risking having a Christmas party this year. I hope that I do not regret doing so.

Liked by Barbara Ann

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@charlie999

Sorry for u,JoAnn. I have been on the big 3 over a month now, and feel terrible. I am trying several things to get some relief —. MSM, curcummin, blueberry extract and others. If I find help, will let u know.

Chin up, pray and keep the faith

Blessings,

Charlie

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@charlie999, Hello Charlie. Welcome to our forum. I am glad that you found us. Would you want to share more about your story with MAC?

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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@bschaper, Hi Barb. It does get to that point doesn’t it? Sick and tired of being sick and tired. I felt that way for years. I feel like a normal person again, even though I am not. It is possible to get there. Hang in there!

Liked by Barbara Ann

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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windwalker….terri ….get all ready made food!!! and do not worry re housekeeping prior…use all disposable plates etc
tdrell

Liked by heathert

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@jkiemen Hi Jo Ann. I am dismayed that you must now go on the BIG 3. I have never been on them myself. I feel certain that others who have will jump in with some advice. Wishing you the best over the holidays and improved health over the new year. Hugs!

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I started December 6. I take all three everyday for 30 days. Then I reduce to 3x/week.

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How are you feeling with the meds. I started on November 30th so we started pretty close to each other. Sometimes I feel like I don’t want to have the gap of 2 days that happens once a week on the 3 time a week regimen. I feel like I am almost glad when I am due for another dose. I guess it makes me feel like at least I am doing something to get better. I have been taking the Probiotics every day and that seems to be working OK. I am not sure how long it will take to notice something positive in the way I feel. I am really tired by the time night comes. I can fall asleep within minutes of sitting down.

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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@tdrell, Hi Terri, Happy Holidays to you & yours! The party was a success, used disposable dishes, hubby did all of the baking, I bought prepared items. Thank goodness it wasn’t stressful, and nobody came with a cold or anything. I did have a couple cancel due to illness that they did not wish to spread. I was thankful that they were considerate.

Liked by heathert

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@jkiemen

How are you feeling with the meds. I started on November 30th so we started pretty close to each other. Sometimes I feel like I don’t want to have the gap of 2 days that happens once a week on the 3 time a week regimen. I feel like I am almost glad when I am due for another dose. I guess it makes me feel like at least I am doing something to get better. I have been taking the Probiotics every day and that seems to be working OK. I am not sure how long it will take to notice something positive in the way I feel. I am really tired by the time night comes. I can fall asleep within minutes of sitting down.

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@jkiemen, Hang in there chicky, I know that being tired gets old.

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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@tdrell great advice, Xmas can be easier, yay!

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@bschaper2

I have been on the big 3 since March with no problems until 2 weeks ago. Now off the big three due to severe diarrhea, just in time for the holidays. Will know more on Friday, I hope, after seeing ID doc. Also, having an endoscope Wednesday. Getting a little sick of being sick.

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I ran into a couple relatives with colds over Christmas. I was so upset that they would blow their nose and not wash their hands or use hand sanitizer. So gross. I am bringing one with me on New Years and putting it in front of them. No wonder people get sick. Germs everywhere.

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I seem to be able to tolerate most medicines and antibiotics, so I am no help.

Pat

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@jenblalock

Hi Joann, I’ve been on the big 3 plus some others. I was lucky and did not have bad side effects. Well, I should say that the Rifampin did not agree with me so they took me off that and put me on Clofazimine. Later I tried Rifabutin which I tolerated well so that was added. The meds did make me tired early in the day and I changed my taste buds so that foods didn’t taste the same and my appetite was less but for me that wasn’t a bad thing. For once in my life I didn’t have to watch everything I ate or gain weight. 🙂 I was on the meds for 15 months and have been off since April of this year. They did eradicate the NTM so treatment was successful.

They should start each med separately adding the new one each week. That way if you don’t tolerate one they’ll know which one it is. You’ll get your blood tested and eyes checked while on the meds. The doctors should explain all this to you. Ethambutol can affect the eyes and all the meds can affect liver and kidneys. Also if you end up on Amikacin you’ll want to get your ears checked regularly.

Best to you and let us know how it goes.

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@jenblalock Thank you so much for your reply! I didn’t see it somehow beforehand! I am so pleased to hear you are doing well. I imagine, as a former athlete, it came as quite a shock when you learned of your illness. My mom was not diagnosed with bronchiectasis, just MAC.

She walks on the treadmill daily and I know she feels this is very important for keeping her lungs strong.

She did have a question for you and the group–how close together do you take the medicines? She said she takes the first, then goes back to sleep (it makes her feel the worst); two hours later she takes the next, goes to the gym, and when she gets home eats a big bowl of oatmeal and takes the third. I think she should be taking them closer together–does anyone know? When she has taken them close together, it makes her much more sick, which is why she doesn’t like to (although I think she needs to). Love any thoughts.

Thanks again for your reply!!

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