1. < MAC & Bronchiectasis

MAC antibiotics and side effects

Posted by reneeg @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we're told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

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irene5 Irene Estes | @irene5 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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I’ve tried to comment back to you on this, but for some reason it is not going through.

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irene5 Irene Estes | @irene5 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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My pleasure! I think just the funduscopy is sufficient since it is a "baseline." That is done with every eye exam, and they write it down. In subsequent exams they would be able to tell if there are changes. You can download the color blindness app to use and check yourself periodically. This disease is so NOT a "walk in the park." Hugs.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196, Hi Carla. Is it possible for you to find a doctor who has treated 5 or more patients with mac? You really need a doctor who is experienced with treating this disease. It is nothing to play with. You also need a good Infectious Disease doctor.

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carla1196 | @carla1196 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5
Thank you for this information. Turns out the eye Dr at Walmart does not have machine for a funduscopy. Guess a new eye Dr is needed. Thank you for this information. Much appreciated

REPLY
irene5 Irene Estes | @irene5 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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I wondered about that. The ID doctor in Tennessee insisted I go to an opthamologist and not an optometrist which is probably who they have at Walmart. Sorry about that. Because the eye exam was recommended by a doctor I paid nothing for it. Hope the same for you!

REPLY
carla1196 | @carla1196 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@irene5
My biggest problem is I have no health insurance. I really do not think my ID Dr really knows what the eye Dr is dining and that is why he printed the type of eye exam I need for me to figure it out? Glad to know I am on the right track now. Thank you again

REPLY
carla1196 | @carla1196 | Jan 28, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

Jump to this post

@windwalker
I would like be to see a ID Dr who has had more experience for sure. My problem is that I have no health insurance and so I am lucky to have the Dr’s I have because of the no insurance.

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boomerexpert | @boomerexpert | Jan 29, 2018
In reply to @carla1196 "Hello everyone my name is Carla. I am new to the this forum and saw that..." + (show)
@carla1196

Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance

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@carla1196 fully concur with Terri...that's two Terri's who'd like to see you find the best care!

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Jane S. Brown | @macjane | Mar 1, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I've lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn't and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I'm 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?</p>

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Just came across this and wonder what the Emory doctor has suggested. Many Thanks

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Flib | @flib | Mar 7, 2018
In reply to @softballqueen "I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago..." + (show)
@softballqueen

<p>I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I've lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn't and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I'm 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?</p>

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I was diagnosed with mac bronchiectasis nine years ago when I was seventy-three. I chose not to go on the antibiotics. I had five very good years before really feeling the effects of the disease. Only one of the antibiotics, azithromiazine , responded to testing. I was on it for five months and did feel better, gained a little weight and had better energy. However, I was losing hearing in my left ear. My pulmonary doctor took me off it immediately as she judged it was a side effect of the antibiotic. I think I made a good choice for my life. I know that some folks on this site encourage hanging in and going through the side effects but for some they are quite damaging. It's an individual choice. Good luck Flib

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