1. < MAC & Bronchiectasis

about to begin treatment for MAC

Posted by onana @onana, Aug 18, 2018

Greetings. I'm new to the group and about to begin treatment for MAC. I'd appreciate hearing from anyone who has experienced the three drug treatment and especially hearing best ways to tolerate the side effects.

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Jane S. Brown | @macjane | Oct 6, 2018
In reply to @windwalker "@onano, Together we are stronger! Knowing that we are not alone makes this disease a lot..." + (show)
@windwalker

@onano, Together we are stronger! Knowing that we are not alone makes this disease a lot less scarier.

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Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two years ago I was diagnosed with MAC as we have discussed in the past. Suddenly after getting so sick on one on the antibiotics, treatment stopped yet since February of this year, I am sure, the MAC is having some effect on me. Fever and chills, nausea, headache, so little sleep and the fatigue overwhelming. I lost 40 lbs much too rapidly. Ironically, I go from shaking so badly from chills to heat that feels like 110. What we started to do was to take morning and afternoon temps. I go from 96.4 to 99.8. The normal is 97.6 so when I had what was severe sarcoidosis 30 years ago, I was only at 102-103. I bring up sarcoid only because despite all the symptoms of the MAC, I was told I was looking at sarcoid. The temp readings just started and I am sure the fevers have been higher. I am doubled over with pain at times and really weak. When I talked with Pulmonary Doctor, I told him that there has been no day that I haven't felt sick since February. After months I was told that symptoms could be related to my esophagus or diverticulitis. I was so sick at times that I never got on computer. I find it so hard to read that I was off computer but hearing the doctor say we stopped any treatment for MAC because I reacted to meds. I tried to get in pool twice to walk in Spring but basically collapsed after the gross fatigue that continues to this day. I was told yesterday by a physical therapist that works specifically with people with colon problems. She had never heard of MAC but feels I need to contact Mayo about MAC. Have you ever heard of anyone being treated for MAC after diagnosis and then just stopped?

Thanks,

Jane

REPLY
2 replies
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 6, 2018
In reply to @macjane "Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two..." + (show)
@macjane

Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two years ago I was diagnosed with MAC as we have discussed in the past. Suddenly after getting so sick on one on the antibiotics, treatment stopped yet since February of this year, I am sure, the MAC is having some effect on me. Fever and chills, nausea, headache, so little sleep and the fatigue overwhelming. I lost 40 lbs much too rapidly. Ironically, I go from shaking so badly from chills to heat that feels like 110. What we started to do was to take morning and afternoon temps. I go from 96.4 to 99.8. The normal is 97.6 so when I had what was severe sarcoidosis 30 years ago, I was only at 102-103. I bring up sarcoid only because despite all the symptoms of the MAC, I was told I was looking at sarcoid. The temp readings just started and I am sure the fevers have been higher. I am doubled over with pain at times and really weak. When I talked with Pulmonary Doctor, I told him that there has been no day that I haven't felt sick since February. After months I was told that symptoms could be related to my esophagus or diverticulitis. I was so sick at times that I never got on computer. I find it so hard to read that I was off computer but hearing the doctor say we stopped any treatment for MAC because I reacted to meds. I tried to get in pool twice to walk in Spring but basically collapsed after the gross fatigue that continues to this day. I was told yesterday by a physical therapist that works specifically with people with colon problems. She had never heard of MAC but feels I need to contact Mayo about MAC. Have you ever heard of anyone being treated for MAC after diagnosis and then just stopped?

Thanks,

Jane

Jump to this post

@macjane Gosh Jane, that is aweful that you have felt bad every day since February. If you can get into Mayo clinic to be seen; I definitely would because you are dealing with two diseases that can be difficult to treat properly. From what I read yesterday from a Mayo Moderator, the Mayo in Rochester is the one you would want to go to because of your Sarcoidosis issue. They have good specialists there for that. My cousin has sarcoids and she said the fatigue is just unrelenting. Do you know if your sarcoids is actively back? Are there new tumors or any at all? Sending you a great big cyber hug Jane.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 6, 2018
In reply to @macjane "Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two..." + (show)
@macjane

Terri, I have just returned a few days ago from seeing my Pulmonary/Critical Care doctor. Two years ago I was diagnosed with MAC as we have discussed in the past. Suddenly after getting so sick on one on the antibiotics, treatment stopped yet since February of this year, I am sure, the MAC is having some effect on me. Fever and chills, nausea, headache, so little sleep and the fatigue overwhelming. I lost 40 lbs much too rapidly. Ironically, I go from shaking so badly from chills to heat that feels like 110. What we started to do was to take morning and afternoon temps. I go from 96.4 to 99.8. The normal is 97.6 so when I had what was severe sarcoidosis 30 years ago, I was only at 102-103. I bring up sarcoid only because despite all the symptoms of the MAC, I was told I was looking at sarcoid. The temp readings just started and I am sure the fevers have been higher. I am doubled over with pain at times and really weak. When I talked with Pulmonary Doctor, I told him that there has been no day that I haven't felt sick since February. After months I was told that symptoms could be related to my esophagus or diverticulitis. I was so sick at times that I never got on computer. I find it so hard to read that I was off computer but hearing the doctor say we stopped any treatment for MAC because I reacted to meds. I tried to get in pool twice to walk in Spring but basically collapsed after the gross fatigue that continues to this day. I was told yesterday by a physical therapist that works specifically with people with colon problems. She had never heard of MAC but feels I need to contact Mayo about MAC. Have you ever heard of anyone being treated for MAC after diagnosis and then just stopped?

Thanks,

Jane

Jump to this post

@macjane I also wanted to mention that the swing in body temperature is common with both mac and/or pseudomonas. I had a pseudomonas infection in the spring of 2016. With that, I was hot & cold throughout the nights and lost 27 lbs.

REPLY
suzyqueue | @suzyqueue | Oct 19, 2018
In reply to @onana "@jkiemen @onana Hi Jo Ann! I'm beginning my treatment today with the same 3 drugs you..." + (show)
@onana

@jkiemen

@onana Hi Jo Ann! I'm beginning my treatment today with the same 3 drugs you said you used when you responded to me on August 20, 2018. Thank you so much for that response. I am taking your advice about how to time the drugs. I'll let you know how it goes. I have to admit that reading about the nasty side effects from some folks on the forum has me a little scared, but your post encourages me to go ahead and give it my best shot. Thanks again. Olivia in California

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Hi there. I've been on the same mess of medicines that you are. How and what time of day do you take and/or space your doses out? I'm looking for suggestions to maybe change mine to. Thanks in advance.

REPLY
Jo Ann K | @jkiemen | Oct 19, 2018

@suzyqueue I take my meds all together on an empty stomach. I find I do not get too much nausea with them. Since they are 3 days a week, I try to space it out so there is not such a big gap between the 3rd dose for the week and the 1st dose for the next week. I take my them on Monday morning at like midnight or shortly after. Then on Wed I take about 11 am then on Friday I take in the late afternoon. Of course I have to make sure my stomach is empty so I adjust meals or snacks to make sure I haven't eaten within 4 hours of any of the doses. It has been working out OK so far.

REPLY
1 reply
suzyqueue | @suzyqueue | Oct 19, 2018
In reply to @jkiemen "@suzyqueue I take my meds all together on an empty stomach. I find I do not..." + (show)
@jkiemen

@suzyqueue I take my meds all together on an empty stomach. I find I do not get too much nausea with them. Since they are 3 days a week, I try to space it out so there is not such a big gap between the 3rd dose for the week and the 1st dose for the next week. I take my them on Monday morning at like midnight or shortly after. Then on Wed I take about 11 am then on Friday I take in the late afternoon. Of course I have to make sure my stomach is empty so I adjust meals or snacks to make sure I haven't eaten within 4 hours of any of the doses. It has been working out OK so far.

Jump to this post

Thank you so much for the information. I'm prescribed to take these every day. I've been spacing them out every couple hours but it's such a hassle. I've been curious about taking them all at once. I may try it. Then again, my Infectious Disease Dr is doing another "succeptibility" test on a sputum sample to see if all 3 meds are what I still should be on. I didn't have much improvement in my last CT scan so something may need to be changed. Thanks again.

REPLY
Jo Ann K | @jkiemen | Oct 19, 2018

@suzyqueue It does take them a while to work. It is good he is doing susceptibility testing. They have approved the inhaled Amikcacin

REPLY
1 reply
Jo Ann K | @jkiemen | Oct 19, 2018

@suzyqueue We need to all keep an eye on Savara Pharmaceuticals and Molgradex Clinical trial

REPLY
suzyqueue | @suzyqueue | Oct 19, 2018
In reply to @jkiemen "@suzyqueue It does take them a while to work. It is good he is doing susceptibility..." + (show)
@jkiemen

@suzyqueue It does take them a while to work. It is good he is doing susceptibility testing. They have approved the inhaled Amikcacin

Jump to this post

Yes!!!! My doctor did tell me that the other day as well as me getting a communication from the National Jewish Hospital in Denver about it. My doctor said that I would most likely be a candidate should my progress continue to be weak. It sounds promising.

REPLY
pking | @pking | Oct 20, 2018

I am new to the website. I live in Massachusetts and am being treated by my doctor at Mass General. I'm beginning the "big three," but am so sick from the rifampin (extreme nausea which, alas, is quite constant), so fear I won't make it. Reading this thread has helped, but I have to do better than this! This is Day #5 for me. I would appreciate any ideas about managing the nausea.

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