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Jo Ann K
@jkiemen

Posts: 367
Joined: Jun 23, 2017

Have to start the big three

Posted by @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

REPLY

@heathert

Hi @jkiemen I have been on them for 3 years and for me it got better after the first 6 months to a year. At first I had nausea, I sucked on ginger lollies constantly and drank ginger and licorice tea which helped alot. I also had gerd/heartburn so took omeprazole for that which keeps it at bay. I also felt flu like for some time. So although there were symptoms I eventually had them sorted and after a year on them felt alot better. Everyone is different so I hope you do really well on them.
Take Care
Heather

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@heathert Amen to that!

@jkiemen

Thank you. I had my baseline eye exam today, pick up the meds tomorrow and then I guess I will start them. I will pick up the ginger lollies. Where did you find them?

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@lindam272 , Thank you for posting this, I was just about to myself. @jkiemen , the one antibiotic that seems to be the hardest on the stomach is the rifampin. Please take extra note from that list; to take it on an empty stomach.

@jkiemen Hello Jo Ann. How are you doing on your meds?

@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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Hi @jenblalock
My mom has just been diagnosed with MAC. She is an active, healthy 65 year old woman. She is on three drugs:
Ethambutol, Rifabutin, and Azithromycin (not Clofazimine). Is there anything else you recommend for a successful eradication? Is there anything else you attribute to your defeating this disease? Thanks for any thoughts or recommendations you or the group can provide.

Well I too have MAC and took the big 3. I could not tolerate Ethambutol so my Dr. changed the third one to be inhaled amikacin. If she can tolerate those three that is the usual first response to MAC. Where does she live? Does she have a good ID Dr.? There are ways to build your immune system as well as other things to consider. No more tap water, get a shower head that is steel only with no plastic parts, no hot tubs…do your research….

@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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Hi @rosecurran I remember the confusion when I was diagnosed last year. I was diagnosed with MAC, bronchiectasis and a couple of cavitary lesions (holes in the lungs). I’ve been a runner and a former triathlete and have always been super healthy so I was floored! I can only speak for myself as I am definitely no expert on this disease.

Was your mom also diagnosed with Bronchiectasis? After research, I learned that while the MAC infection can be arrested with the meds, bronchiectasis is with us forever.

I was put on Clofazimine because I didn’t tolerate one of the meds. So, if she is tolerating the 3 meds okay, I doubt she’ll take that.

For myself, I did nothing special. I took the meds and did my lung clearance (which is for life if a person has bronchiectasis) and tried to get some exercise because that is good for the lungs. Because of the cavitary lesions I also was put on a drug called Amikacin, first by IV with a PICC line and then inhaled. My first sputum culture after 3 months came back negative and all sputum cultures after that came back negative also, although that is not the case for everyone. I stayed on the meds for a total of 15 months.

I have been off meds since April this year and doing pretty well. Started working out again although lately I’ve been rather lax (note to self: get back to it). Right now I’m going through some sort of little thing but lungs look no worse so I take that as a win. I am still adjusting to my lungs never being ‘normal’ and trying to be satisfied that there have been no negative changes in my CT scans.

So, all in all, it is a long learning process and a new normal. I just turned 63, by the way and was 61 when diagnosed. I’m sure others will chime in here. Best to you and your mom.

I have completed my first week in the big 3.. I felt poorly this morning. I have headache muscle aches and palpitations. Did anyone have allot of muscle aching?

@jkiemen

I have completed my first week in the big 3.. I felt poorly this morning. I have headache muscle aches and palpitations. Did anyone have allot of muscle aching?

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@jkiemen I had muscle aches. It takes your body awhile to adjust. I’d call the doctor about the palpitations though.

I had a very bad reaction to Ethambutol, severe muscle aches like a bad flu. I couldn’t get out of bed. Did you start the big 3 one week at a time, adding a new drug after the week? That is so the Dr. can know which drug you can’t tolerate? I had to stop taking that and I was put on inhaled amikacin instead.

best of luch

that is exactly how I feel. Aching. For the first several doses I took a lower dose and this was the prescribed dose yesterday. Thanks for sharing your experience

I’d stop it if it doesn’t get better. I could feel the drug leaving my body and just couldn’t tolerate it….

I pushed fluids and am feeling a little better this afternoon and still waiting to hear from my Pulmonologist

@windwalker

@jkiemen Hello Jo Ann. How are you doing on your meds?

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One week of treatment and I was doing OK until this last night. My ears were buzzing, I started aching, couldn’t sleep, had palpitations. I feel better this afternoon but still aching. I have been stable GI wise so far though. I was afraid to take anything for the aching to protect my poor liver from more medications.

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

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Since I last posted, I have been hospitalized at Mayo in Jacksonville for five days to get the Crohn’s under control. I am now released and am to take the three drugs every day for 30 days. After that I am going to take them theee times a week for 17 months. The plan is that I will be able to begin Remicade for the Crohn’s in 30 days. When you start the three drugs, how do you do it? Take them all at once? What time of day? Right now I don’t know how to start them.

@colleenyoung

Hi JoAnn,
I know this is a scary time. I’m tagging a few MAC members who have taken the “big 3” antibiotics to join this discussion. @cila @sophie1019 @kaystrand @pamelasc1 @lindam272 @Paula_MAC2007 @tdrell @heathert @kwilbur, JoAnn would love to hear from you.

JoAnn, Here are few discussions to review while we wait for members to chime in:
– Has anyone been on azithromycin, rifampin, and clofazomine cocktail? https://connect.mayoclinic.org/discussion/has-anyone-been-on-azithromycin-rifampin-and-clofazomine-cocktail/
– MAC antibiotics and side effects https://connect.mayoclinic.org/discussion/mac-antibiotics-and-side-effects/
– Update On Treatment of MAC https://connect.mayoclinic.org/discussion/update-on-treatment-of-mac/

Has you doctor recommended probiotics?

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@pinktower , My gosh, it sounds like you have really been through it! I hope you are feeling better from your Crohn’s episode. I know that was no fun. About starting on your meds; I have heard that some doctors have recommended that you introduce each antibiotic a week apart. That way, if you have a bad reaction to one, it will be easier to pinpoint which one it is. Members have written that Rifampin was hard on their stomachs, it worked out best for some if they took it on an empty stomach. It has been known to cramp the stomach or cause nausea. Everybody is different, you may not have any trouble at all with it. Let us know how you do on the BIG 3.

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