1. < MAC & Bronchiectasis

MAC Big Three Side Effects

Posted by arbakr @arbakr, Mar 10, 2023

A few months ago I was diagnosed with Primary Immunodeficiency. My body has stopped producing immunoglobulin G. Next week I'll begin infusion therapy to replace it in my body and repair my immune system. About two months later, I learned I have MAC and bronchiectasis. About a month after I start my infusions I'll begin my antibiotics for MAC.

I'm interested in knowing about others' side effects from the big three. I'm also interested in how you manage your side effects. I know this information will really put my mind at ease. Thank you in advance.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

dlynn1210 | @dlynn1210 | Apr 17, 2023
In reply to @sueinmn "Hmm, it might be time for a new doc, maybe at Mayo, NJH or another NTM..." + (show)
@sueinmn

Hmm, it might be time for a new doc, maybe at Mayo, NJH or another NTM and MAC center of excellence?
It's awful when a doctor speaks to a patient like that, and certainly doesn't contribute to healing.
Sue

Jump to this post

My thought as well. When he said I was going to die it wasn’t said with even an ounce of compassion but rather anger as if a personal loss for him. I was in total shock in the difference in him from my first visit when he told my husband and I he was going to take care of me. I called Mayo a few months ago trying to make an appt but was told they didn’t accept our insurance. I will look into NJH and NTM.

REPLY
dlynn1210 | @dlynn1210 | Apr 17, 2023
In reply to @bellsina71 "I hope for your sake that they take you off those antibiotics and find something else..." + (show)
@bellsina71

I hope for your sake that they take you off those antibiotics and find something else to treat you with. I have read some people refuse to take the antibiotics and go on Cipro and another drug I can't remember. I really hope that you can gain some weight back!!
So sorry you have to go through all this, and I wonder if you're having the side effects because of how long you've been on the drugs. I think that can have something to do with it. I'm new to taking them and that's not saying that in 8 months that I'm not going to have side effects to some degree, and I hope I don't but it could happen. I like reading comments because I want to be aware of what to look out for!
I'm really hoping that they figure out something different for you because if you go out to meds you'll probably gain some weight back and having some weight on your bones with Mac it's really important!!! Thanks for your post and I wish you all the best luck!
Angela

Jump to this post

I also have thought that there may be a connection between how long I’ve been on the 3 meds and the side effects I am now experiencing. The severe dizziness just began about one year ago but I’ve been on the meds between 2-3 years. I hadn’t asked or even considered side effects that could be attributed to the meds. I was surprised when I did a search on all three and found side effects attributed to all three. Vision and hearing can be affected. I’ve noticed a little difference in my vision and my eye doctor today told me I now have 20/30 vision with corrective lens instead of 20/20 but he said that is still good. However I have noticed a huge change in my hearing.

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 17, 2023
In reply to @dlynn1210 "I also have thought that there may be a connection between how long I’ve been on..." + (show)
@dlynn1210

I also have thought that there may be a connection between how long I’ve been on the 3 meds and the side effects I am now experiencing. The severe dizziness just began about one year ago but I’ve been on the meds between 2-3 years. I hadn’t asked or even considered side effects that could be attributed to the meds. I was surprised when I did a search on all three and found side effects attributed to all three. Vision and hearing can be affected. I’ve noticed a little difference in my vision and my eye doctor today told me I now have 20/30 vision with corrective lens instead of 20/20 but he said that is still good. However I have noticed a huge change in my hearing.

Jump to this post

Have you had your hearing tested while on the meds? The standard is every 6 months, with consideration of stopping the meds if it declines much.

Also, has the doctor recultured your sputum and done new sensitivity testing? Maybe the remaining bacteria is resistant to what you are using. Or, if the colonies have declined enough, maybe switch from drugs to rigorous airway clearance with 7% saline.
I did that at roughly 19 months, because the side effects were intolerable for me. My slings continued to improve for the first year, and are now stable. I'm sure the MAC is still hiding in there, but I keep chasing it with the 7% saline.
Roughly where in the US are you located? There are excellent HTM docs in quite a few places now.
Sue

REPLY
dlynn1210 | @dlynn1210 | Apr 18, 2023

I have learned more about MAC in a short time than I have from doctors since I was diagnosed. We have had the same Optometrist for 15 years and have a close relationship with him. I told him yesterday that I had noticed a ‘slight’ difference in my vision but a major difference in my hearing. I know now from this site that I should have had my hearing tested before now but can only move forward and get it tested ASAP.

I understand that MAC is rare but it sounds as if too many of us learn as we go. I had to go online to find out how to use my nebulizer. On my last visit I asked my pulmonologist’s assistant if they had treated anyone with MAC. This is my regular doctor who I’ve gone to since my diagnosis. Even though she told me they had I still question whether they have with all the lack of info. I feel like he is passing the buck for a better way to describe it. I have had sputum cultures and all show the bacterial infection. A chest x-ray in Dec 2022 showed twice as bad compared to Dec 2021. No one mentioned side effects to the three meds.

How would they do sensitivity testing? I don’t believe there has been any previously done. The first I’ve heard of including an infectious disease doctor was on this site. It is a case of learn as you go.

I live in Seminole Florida just below Tampa. What is HTM?

Thank you again Sue. I’ve learned more from this site and you than I’ve learned in 3 years from my doctors. It’s almost like they don’t want to tell you that this is not curable and the best we can hope for is remission. I understand that to a degree but I believe sharing important info like get a baseline hearing and vision test as soon as we are diagnosed would be important. My husband just said he has no faith in my pulmonologist. He is a very nice and compassionate doctor who I suspect has not treated anyone with MAC. I placed a lot of hope in the doctor he referred me to after the first appt but I’m not exaggerating when I describe him as Dr. Jeckle / Mr. Hyde because I walked out of my second appt with no hope. I’m doing everything I can to gain weight but being told I was going to die if I continued to lose weight after losing another 1 lb 4 oz in 6 weeks hit me like a ton of bricks. I was depressed for a few weeks but I finally decided to take everything I’m learning here and go forward. First - get my hearing tested. Second - find an infectious disease doctor. Third - who do I contact for sensitivity testing?

REPLY
2 replies
dlynn1210 | @dlynn1210 | Apr 18, 2023

I didn’t address one thing the Guru said during my first appt - that maybe I had built up an immunity to one or more of the big three. “We might have to add a 4th med. No mention of that during second appt.

REPLY
Mentor
Sue, Volunteer Mentor | @sueinmn | Apr 18, 2023
In reply to @dlynn1210 "I have learned more about MAC in a short time than I have from doctors since..." + (show)
@dlynn1210

I have learned more about MAC in a short time than I have from doctors since I was diagnosed. We have had the same Optometrist for 15 years and have a close relationship with him. I told him yesterday that I had noticed a ‘slight’ difference in my vision but a major difference in my hearing. I know now from this site that I should have had my hearing tested before now but can only move forward and get it tested ASAP.

I understand that MAC is rare but it sounds as if too many of us learn as we go. I had to go online to find out how to use my nebulizer. On my last visit I asked my pulmonologist’s assistant if they had treated anyone with MAC. This is my regular doctor who I’ve gone to since my diagnosis. Even though she told me they had I still question whether they have with all the lack of info. I feel like he is passing the buck for a better way to describe it. I have had sputum cultures and all show the bacterial infection. A chest x-ray in Dec 2022 showed twice as bad compared to Dec 2021. No one mentioned side effects to the three meds.

How would they do sensitivity testing? I don’t believe there has been any previously done. The first I’ve heard of including an infectious disease doctor was on this site. It is a case of learn as you go.

I live in Seminole Florida just below Tampa. What is HTM?

Thank you again Sue. I’ve learned more from this site and you than I’ve learned in 3 years from my doctors. It’s almost like they don’t want to tell you that this is not curable and the best we can hope for is remission. I understand that to a degree but I believe sharing important info like get a baseline hearing and vision test as soon as we are diagnosed would be important. My husband just said he has no faith in my pulmonologist. He is a very nice and compassionate doctor who I suspect has not treated anyone with MAC. I placed a lot of hope in the doctor he referred me to after the first appt but I’m not exaggerating when I describe him as Dr. Jeckle / Mr. Hyde because I walked out of my second appt with no hope. I’m doing everything I can to gain weight but being told I was going to die if I continued to lose weight after losing another 1 lb 4 oz in 6 weeks hit me like a ton of bricks. I was depressed for a few weeks but I finally decided to take everything I’m learning here and go forward. First - get my hearing tested. Second - find an infectious disease doctor. Third - who do I contact for sensitivity testing?

Jump to this post

If you are in Florida, have you considered contacting Mayo in Jacksonville for a consult?
http://mayocl.in/1mtmR63
Sue

REPLY
dlynn1210 | @dlynn1210 | Apr 18, 2023

Yes I called several months ago but was told they won’t accept our insurance - Aetna Medicare.

REPLY
1 reply
healthybon | @healthybon | Apr 19, 2023
In reply to @dlynn1210 "Yes I called several months ago but was told they won’t accept our insurance - Aetna..." + (show)
@dlynn1210

Yes I called several months ago but was told they won’t accept our insurance - Aetna Medicare.

Jump to this post

I have medicaid advatage freedom plan
Ppo. Mayo doesn’t accept but national jeeidhesth in Denver does so gonna go there soon unhook whicdebddm. X

REPLY
leilam | @leilam | Apr 19, 2023
In reply to @arbakr "Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC...." + (show)
@arbakr

Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC. I've been to so many doctors, and the nurse practitioner at my pulmonologist's office is who figured everything out! As a nurse, I'm really proud of her! I'm starting Immunoglobulin G monthly infusions Wednesday. My Infectious disease doctor wants me to have a few infusions in me before starting my MAC treatment. Side effects from both the infusions and the MAC treatments have sure been on my mind. Learning from others has been a huge help, especially what they're experiencing and how they deal with it. I sure do appreciate your response and your advice. God bless you.

Jump to this post

I have been on Hizentra for several months for my immune deficiency. I with my daughter's help infuse it subcutaneously every week and so far I have had no side effects.

REPLY
nana43 | @nana43 | Apr 19, 2023
In reply to @dlynn1210 "I have learned more about MAC in a short time than I have from doctors since..." + (show)
@dlynn1210

I have learned more about MAC in a short time than I have from doctors since I was diagnosed. We have had the same Optometrist for 15 years and have a close relationship with him. I told him yesterday that I had noticed a ‘slight’ difference in my vision but a major difference in my hearing. I know now from this site that I should have had my hearing tested before now but can only move forward and get it tested ASAP.

I understand that MAC is rare but it sounds as if too many of us learn as we go. I had to go online to find out how to use my nebulizer. On my last visit I asked my pulmonologist’s assistant if they had treated anyone with MAC. This is my regular doctor who I’ve gone to since my diagnosis. Even though she told me they had I still question whether they have with all the lack of info. I feel like he is passing the buck for a better way to describe it. I have had sputum cultures and all show the bacterial infection. A chest x-ray in Dec 2022 showed twice as bad compared to Dec 2021. No one mentioned side effects to the three meds.

How would they do sensitivity testing? I don’t believe there has been any previously done. The first I’ve heard of including an infectious disease doctor was on this site. It is a case of learn as you go.

I live in Seminole Florida just below Tampa. What is HTM?

Thank you again Sue. I’ve learned more from this site and you than I’ve learned in 3 years from my doctors. It’s almost like they don’t want to tell you that this is not curable and the best we can hope for is remission. I understand that to a degree but I believe sharing important info like get a baseline hearing and vision test as soon as we are diagnosed would be important. My husband just said he has no faith in my pulmonologist. He is a very nice and compassionate doctor who I suspect has not treated anyone with MAC. I placed a lot of hope in the doctor he referred me to after the first appt but I’m not exaggerating when I describe him as Dr. Jeckle / Mr. Hyde because I walked out of my second appt with no hope. I’m doing everything I can to gain weight but being told I was going to die if I continued to lose weight after losing another 1 lb 4 oz in 6 weeks hit me like a ton of bricks. I was depressed for a few weeks but I finally decided to take everything I’m learning here and go forward. First - get my hearing tested. Second - find an infectious disease doctor. Third - who do I contact for sensitivity testing?

Jump to this post

Hi dlynn

Definitely reach out to National Jewish Health!!
In the interim, I am part of a support group near Tampa that meets every month. This is a wonderful group of women with NTM and live in close proximity to you with good pulmonologists and ID docs. Next meeting is a week from today on April 26. Please message me your email and I will send you the link.
Sending you positive VIBES!
Dee

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.