Rifampin discontinued due to side effects. Looking for feedback.

Posted by kayskid @kayskid, Aug 21 4:04pm

Pulmonologist stopped Rifampin after 4 months. I have been sick with nausea the whole time and starting to bruise. (I have a coexisting bleeding disorder). He said continue Ethambutol and Azythromycin 2 more months then repeat CT and culture. I am worried that I will be off and on these meds for years, so tried to stick it out, but now my teeth are stained, I have lost weight and now the bruising. (I must have been a sight as I was neaseated and then tried to avoid the elevator by walking up 3 flights with a mask on then became short of breath and dizzy). Poor judgement but i never had trouble with stairs before. It scared me.

@kayskid I’ve started this several times so hopefully I can finish it. There have been studies that suggest Rifampin is not needed as a third med. Rifampin can interact with thyroid medication as well as others like Premarin. So if you can go without it, it should be ok in terms of MAC outcome. Unfortunately, some of us are on the meds for a long time. Weight loss also happens for some of us. If you can drink Ensure or other nutritious, high calorie, and protein drinks (Ex. Garden of Life) that might be beneficial for you. Your becoming dizzy etc. may have been a result of wearing the mask up all those flights and breathing in all that CO2. Take care. irene5
.

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@irene5

@kayskid I’ve started this several times so hopefully I can finish it. There have been studies that suggest Rifampin is not needed as a third med. Rifampin can interact with thyroid medication as well as others like Premarin. So if you can go without it, it should be ok in terms of MAC outcome. Unfortunately, some of us are on the meds for a long time. Weight loss also happens for some of us. If you can drink Ensure or other nutritious, high calorie, and protein drinks (Ex. Garden of Life) that might be beneficial for you. Your becoming dizzy etc. may have been a result of wearing the mask up all those flights and breathing in all that CO2. Take care. irene5
.

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Thank you!

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I had been taking the big 3 for several months and had to stop taking Rifampin. My ID doc at Vandy said studies were ongoing at National Jewish Health testing to see if Rifampin was really doing any good, her opinion was that it was probably not. I started taking Arikayce instead, along with Azithromycin and Ethambutol. I gave a sputum sample 5 weeks ago and as of today it is still negative. Holding my breath for another week or so.

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@poodledoc

I had been taking the big 3 for several months and had to stop taking Rifampin. My ID doc at Vandy said studies were ongoing at National Jewish Health testing to see if Rifampin was really doing any good, her opinion was that it was probably not. I started taking Arikayce instead, along with Azithromycin and Ethambutol. I gave a sputum sample 5 weeks ago and as of today it is still negative. Holding my breath for another week or so.

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@poodledoc That is wonderful news! I am so happy for you! irene5

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@poodledoc

I had been taking the big 3 for several months and had to stop taking Rifampin. My ID doc at Vandy said studies were ongoing at National Jewish Health testing to see if Rifampin was really doing any good, her opinion was that it was probably not. I started taking Arikayce instead, along with Azithromycin and Ethambutol. I gave a sputum sample 5 weeks ago and as of today it is still negative. Holding my breath for another week or so.

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Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much she’s a toy poodle at 7 pounds —12 yrs old. I love dogs!

I find your discussion very interesting because I’ve been trying to find somebody that’s on Arikayce!! Can I ask you how long you have been on it ? I have been on it going on three months. Mild Sore throat and raspy voice are my symptoms. I have not taken any sputum specimen yet do you suggest that I need one now since I’ve been on it two months or should I wait? My doctor here in Clearwater and my doctor at NJH I have not said to send one but I a have to advocate for myself most of the time and call the doctors. I have clear sputum with pink plugs of sputum in it and I wondered if your Mac Expectorates are manifesting That? I wonder if the Arikayce kills the bacteria and then I cough up The dead MAC. I don’t know if that’s the way it works but it would be interesting since I keep bringing the same stuff up. I would love to hear what you know about taking this med. Thank you so much

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@judyhodgern

Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much she’s a toy poodle at 7 pounds —12 yrs old. I love dogs!

I find your discussion very interesting because I’ve been trying to find somebody that’s on Arikayce!! Can I ask you how long you have been on it ? I have been on it going on three months. Mild Sore throat and raspy voice are my symptoms. I have not taken any sputum specimen yet do you suggest that I need one now since I’ve been on it two months or should I wait? My doctor here in Clearwater and my doctor at NJH I have not said to send one but I a have to advocate for myself most of the time and call the doctors. I have clear sputum with pink plugs of sputum in it and I wondered if your Mac Expectorates are manifesting That? I wonder if the Arikayce kills the bacteria and then I cough up The dead MAC. I don’t know if that’s the way it works but it would be interesting since I keep bringing the same stuff up. I would love to hear what you know about taking this med. Thank you so much

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@judyhodgern Judy I have been on Arikayce plus Azithromycin and Etambutol since the beginning of June. I had been on and off the Big 3 since 2016, but the MAC continued to spread and the side effects ( for me) of the three meds were beyond unpleasant. As you must know, Arikayce is for people with retractable MAC. Because I am not a coughing kind of gal ( although since Arikayce I am) I will have to have a bronchoscopy in three months. I have recently had to take a short break from Arikayce due to surgery, but I believe this medication along with the two others will kill the MAC because it goes directly into your lungs. Prior to my surgery I was actually starting to have more energy and feel better overall. Arikayce appears to be a drug that MAC does not like, and that’s a good thing! irene5

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Irene you sound like you are on a good track to getting rid of the bad guy. Thank you Irene that was very helpful for me. I had not talked to anybody that has been on Arikayce. I am coughing more also also!! When you say the big three do you mean Rifampin, Etambutol and azithromycin. I am not on rifampin but I’m on colfazamine probably for the abscessus that I was on prior and I may still have it I’m not sure. I had surgery also in December URL-of lung. Thank you so much for your information Irene! I pray for your continued wellness in the future. Judy

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@judyhodgern

Hi poodledoc! Are you a Veternarian? I have a poodle and we love her so much she’s a toy poodle at 7 pounds —12 yrs old. I love dogs!

I find your discussion very interesting because I’ve been trying to find somebody that’s on Arikayce!! Can I ask you how long you have been on it ? I have been on it going on three months. Mild Sore throat and raspy voice are my symptoms. I have not taken any sputum specimen yet do you suggest that I need one now since I’ve been on it two months or should I wait? My doctor here in Clearwater and my doctor at NJH I have not said to send one but I a have to advocate for myself most of the time and call the doctors. I have clear sputum with pink plugs of sputum in it and I wondered if your Mac Expectorates are manifesting That? I wonder if the Arikayce kills the bacteria and then I cough up The dead MAC. I don’t know if that’s the way it works but it would be interesting since I keep bringing the same stuff up. I would love to hear what you know about taking this med. Thank you so much

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Judy, I am a retired small animal Veterinarian, favorite dog breed Standard Poodle, having raised several AKC litters over the years.
I have been on Arikayce for 7 weeks now after getting a positive culture for MAC after taking the big 3 for over 6 months. The only symptom I have is a mild ringing in my ears. Was tested by an Audiologist and I do not have any hearing loss so unless the tinnitus gets worse I will continue taking the Arikayce. I believe IV Amikacin is one of the better drugs for MAC but it has a lot of potentially serious side effects. Taking it by inhalation allows for a smaller dose to get the desired effect with a lot fewer side effects. The "pink plugs" you refer to are probably from small amounts of blood due to the direct irritating effects of the drug, you might ask your Dr about that. My own sputum has been the same for 4 years (light brown), my Dr says the color is probably due to the underlying bronchiectasis that I have. The fact that your sputum is mostly clear is probably a good thing. After the drug kills the MAC it is likely absorbed by the lungs or possibly coughed up but there is no way you can actually see the dead bacteria.
I would be contacting your doctor asap about when to submit a sputum sample, I would think after taking the drug for 3 months it is time to do that. Good luck to you. Bill

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@poodledoc

Judy, I am a retired small animal Veterinarian, favorite dog breed Standard Poodle, having raised several AKC litters over the years.
I have been on Arikayce for 7 weeks now after getting a positive culture for MAC after taking the big 3 for over 6 months. The only symptom I have is a mild ringing in my ears. Was tested by an Audiologist and I do not have any hearing loss so unless the tinnitus gets worse I will continue taking the Arikayce. I believe IV Amikacin is one of the better drugs for MAC but it has a lot of potentially serious side effects. Taking it by inhalation allows for a smaller dose to get the desired effect with a lot fewer side effects. The "pink plugs" you refer to are probably from small amounts of blood due to the direct irritating effects of the drug, you might ask your Dr about that. My own sputum has been the same for 4 years (light brown), my Dr says the color is probably due to the underlying bronchiectasis that I have. The fact that your sputum is mostly clear is probably a good thing. After the drug kills the MAC it is likely absorbed by the lungs or possibly coughed up but there is no way you can actually see the dead bacteria.
I would be contacting your doctor asap about when to submit a sputum sample, I would think after taking the drug for 3 months it is time to do that. Good luck to you. Bill

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Thank you Bill — several things that you said that has made me feel more assured about Arikayce. Do you have fluid left in your neb chamber below your inhale nozzle? I have 2-3cc—each Rx. Is said to be exhalation residue & saliva from the nebulizer Rx. That medication is like liquid gold so I wanted to be sure I wasn’t wasting anything.

REPLY
@poodledoc

I had been taking the big 3 for several months and had to stop taking Rifampin. My ID doc at Vandy said studies were ongoing at National Jewish Health testing to see if Rifampin was really doing any good, her opinion was that it was probably not. I started taking Arikayce instead, along with Azithromycin and Ethambutol. I gave a sputum sample 5 weeks ago and as of today it is still negative. Holding my breath for another week or so.

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Hi Bill (Poodledoc). Got to love those Negative test results. So glad for you!

Liked by migizii

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@judyhodgern

Irene you sound like you are on a good track to getting rid of the bad guy. Thank you Irene that was very helpful for me. I had not talked to anybody that has been on Arikayce. I am coughing more also also!! When you say the big three do you mean Rifampin, Etambutol and azithromycin. I am not on rifampin but I’m on colfazamine probably for the abscessus that I was on prior and I may still have it I’m not sure. I had surgery also in December URL-of lung. Thank you so much for your information Irene! I pray for your continued wellness in the future. Judy

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Thanks Judy. One day at a time! Irene

Liked by alleycatkate

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@irene5

@judyhodgern Judy I have been on Arikayce plus Azithromycin and Etambutol since the beginning of June. I had been on and off the Big 3 since 2016, but the MAC continued to spread and the side effects ( for me) of the three meds were beyond unpleasant. As you must know, Arikayce is for people with retractable MAC. Because I am not a coughing kind of gal ( although since Arikayce I am) I will have to have a bronchoscopy in three months. I have recently had to take a short break from Arikayce due to surgery, but I believe this medication along with the two others will kill the MAC because it goes directly into your lungs. Prior to my surgery I was actually starting to have more energy and feel better overall. Arikayce appears to be a drug that MAC does not like, and that’s a good thing! irene5

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Irene, your comment is music to my ears!!! In all of the yrs I have known you; you said you were getting more energy back and feeling better overall. I believe the surgery was a minor setback, and you will continue to feel better and better until you beat this.

Liked by migizii

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@windwalker

Irene, your comment is music to my ears!!! In all of the yrs I have known you; you said you were getting more energy back and feeling better overall. I believe the surgery was a minor setback, and you will continue to feel better and better until you beat this.

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Thanks Terri!

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@judyhodgern

Thank you Bill — several things that you said that has made me feel more assured about Arikayce. Do you have fluid left in your neb chamber below your inhale nozzle? I have 2-3cc—each Rx. Is said to be exhalation residue & saliva from the nebulizer Rx. That medication is like liquid gold so I wanted to be sure I wasn’t wasting anything.

Jump to this post

Judy, There will always be 2-3 cc left over in the bottom of the cup, they recommend you pour that back into the little bottle and cap it so as to not contaminate the environment.

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@irene5

@kayskid I’ve started this several times so hopefully I can finish it. There have been studies that suggest Rifampin is not needed as a third med. Rifampin can interact with thyroid medication as well as others like Premarin. So if you can go without it, it should be ok in terms of MAC outcome. Unfortunately, some of us are on the meds for a long time. Weight loss also happens for some of us. If you can drink Ensure or other nutritious, high calorie, and protein drinks (Ex. Garden of Life) that might be beneficial for you. Your becoming dizzy etc. may have been a result of wearing the mask up all those flights and breathing in all that CO2. Take care. irene5
.

Jump to this post

I took two doses of rifampin and had to stop due to cramps so bad that I considered going to the er. My doctor told me about the studies and said it was not necesary to substitute a third drug. That was in March 2019 so I would think the results should be ready soon. I am one of the lucky ones. The two drugs worked and I was negative by June 2019. I stayed on the two drugs until May 2020 and also did 4 months of Arikayce. My latest sample apparently was lost on the mail. I need the lab in Tyler to send me more mail in kits.

I hope Arikayce works for you. You have been dealing with this long enough!

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