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MAC Medication and long term side effects

Posted by debminuet @debminuet, Jun 22, 2020

Hi Everyone, I wonder if someone can inform me: I have just decreased an 18 month regime of daily big 3 to three times a week to keep away the bugs during covid. My question is to the suceptibility negative effects to the liver, the reduction in bone marrow, and other possible medical issues that can arise with chronicty of mac and on going meds? Does anyone who is without secondary medical issues have any experience of this?

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kathyhg | @kathyhg | Jun 25, 2020

Interesting. I didn’t have any health issues of significance before getting the flu, pneumonia and finally the mac diagnosis in 2018. I had pneumonia once in 1999 but that’s it.
This is kind of a chicken and egg kind of thing I guess.

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1 reply
derbeltal | @derbeltal | Jun 27, 2020
In reply to @sueinmn "@debminuet If you are asking about long-term effects, may I ask first if you have currently..." + (show)
@sueinmn

@debminuet If you are asking about long-term effects, may I ask first if you have currently got active MAC? Otherwise I am curious why the meds are being continued - many in this group use a more conservative therapy - nebulized 7% saline and faithful lung clearance - to keep the bugs at bay.

I will tell you that 6 months post-med, I have not recovered appetite or the weight I lost, tinnitus is still troublesome, but labs for liver, blood, etc look OK. One side effect was GI issues that removed my NSAID therapy for arthritis, so pain is now an issue. Will be consulting with pain mgmt specialist later this week. Also, there is suspicion that my bone density is compromised, so another consult...will report back on that matter.

Sue

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I know I do not comment very often but follow the comments and have received valuable answers. I have started the noise in my left ear. Cannot go to doctor as doctors in my area are doing televisits. This will not help as they will need to see me. My ID doctor said if I could continue until October, I will probably quit the meds as I have stayed the course even with all the side effects. I wonder if I will be ok since I only have 4 more months. Would love to hear from someone who has had this problem. Thank you so much. The comments from other MAC patients help so much.

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3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 28, 2020
In reply to @derbeltal "I know I do not comment very often but follow the comments and have received valuable..." + (show)
@derbeltal

I know I do not comment very often but follow the comments and have received valuable answers. I have started the noise in my left ear. Cannot go to doctor as doctors in my area are doing televisits. This will not help as they will need to see me. My ID doctor said if I could continue until October, I will probably quit the meds as I have stayed the course even with all the side effects. I wonder if I will be ok since I only have 4 more months. Would love to hear from someone who has had this problem. Thank you so much. The comments from other MAC patients help so much.

Jump to this post

@derbeltal, you may also wish to read this discussion:
- Tinnitus and hearing loss from azithromycin https://connect.mayoclinic.org/discussion/tinnitus-and-hearing-loss-from-azithromycin/

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jun 28, 2020
In reply to @derbeltal "I know I do not comment very often but follow the comments and have received valuable..." + (show)
@derbeltal

I know I do not comment very often but follow the comments and have received valuable answers. I have started the noise in my left ear. Cannot go to doctor as doctors in my area are doing televisits. This will not help as they will need to see me. My ID doctor said if I could continue until October, I will probably quit the meds as I have stayed the course even with all the side effects. I wonder if I will be ok since I only have 4 more months. Would love to hear from someone who has had this problem. Thank you so much. The comments from other MAC patients help so much.

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@derbeltal If I was in your situation, I would do 2 things -call the ID doc right away and explain the change. Tinnitus is not rare, so you may be advised to watch and see if it progresses. If the noise proresses to noticeable hearing loss, stop the meds and contact the doc for an audiology referral. Many specialists are seeing select patients with urgent needs, and losing your hearing is urgent.
Have you either brought this to the doc's attention, or noticed a loss of hearing?
Sue

REPLY
poodledoc | @poodledoc | Jun 30, 2020
In reply to @poodledoc "MAC is more common in females than males and I have noticed that the ladies in..." + (show)
@poodledoc

MAC is more common in females than males and I have noticed that the ladies in this group outnumber the men by far. My message about side effects is directed toward my male friends on this site. I am a little hesitant to post this as I hate posting things that are not easily verified by a quick internet search. So here goes. I took the all of the big 3 drugs for about 5 months and during that time noticed a serious decrease in bedroom activities (trying real hard to be appropriate here). So I began an exhaustive internet search to find if any of the 3 drugs was somehow responsible. I came across a couple of obscure articles that showed Rifampin could indeed affect hormone levels in men. Two of my doctors of course had never heard of such a thing. I just happened to have had a hormone panel done 4 months before starting the drugs for an unrelated issue and it was normal. But I got another identical lab panel done just to see and found a remarkable change in my hormone levels. I immediately stopped the Rifampin (after seeing posts on this site that Rifampin is of questionable value in MAC anyway) and retested 1 month later and found my levels were completely back to normal, at the same time my male "symptoms" were completely back to normal. I realize this information is anecdotal with no science backing it up, but it is a side effect that definitely affected me. Bill

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I wanted to add to my post about the side effects from Rifampin. I found a pdf medical presentation from Dr Gwen Huitt at National Jewish on side effects from all the drugs used for NTM/MAC. She includes hormone issues from Rifampin use. https://www.nationaljewish.org/NJH/media/ProEd/NTM%20Provider%202019/Huitt-Drug-Side-Effects.pdf

REPLY
derbeltal | @derbeltal | Jun 30, 2020
In reply to @colleenyoung "@derbeltal, you may also wish to read this discussion: - Tinnitus and hearing loss from azithromycin..." + (show)
@colleenyoung

@derbeltal, you may also wish to read this discussion:
- Tinnitus and hearing loss from azithromycin https://connect.mayoclinic.org/discussion/tinnitus-and-hearing-loss-from-azithromycin/

Jump to this post

Thank you so much. I am trying to stay on the meds until October. I will talk to my ID doctor in July. I really appreciate your comments. I have never gone through anything like this.

i

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derbeltal | @derbeltal | Jun 30, 2020

Thank you so much for your input. It really helps a lot. I am seeing my ID doctor in two weeks and I will ask him. The ear problem is not unbearable. I think I am just scared of losing my hearing. Thank you so much.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 1, 2020
In reply to @kathyhg "Interesting. I didn’t have any health issues of significance before getting the flu, pneumonia and finally..." + (show)
@kathyhg

Interesting. I didn’t have any health issues of significance before getting the flu, pneumonia and finally the mac diagnosis in 2018. I had pneumonia once in 1999 but that’s it.
This is kind of a chicken and egg kind of thing I guess.

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@kathyhg Hi Kathy. My whole lung misery started when I got pneumonia too when I was 18 yrs old. Lungs went downhill steadily after that; most likely due to congenital bronchiectasis.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 1, 2020
In reply to @poodledoc "MAC is more common in females than males and I have noticed that the ladies in..." + (show)
@poodledoc

MAC is more common in females than males and I have noticed that the ladies in this group outnumber the men by far. My message about side effects is directed toward my male friends on this site. I am a little hesitant to post this as I hate posting things that are not easily verified by a quick internet search. So here goes. I took the all of the big 3 drugs for about 5 months and during that time noticed a serious decrease in bedroom activities (trying real hard to be appropriate here). So I began an exhaustive internet search to find if any of the 3 drugs was somehow responsible. I came across a couple of obscure articles that showed Rifampin could indeed affect hormone levels in men. Two of my doctors of course had never heard of such a thing. I just happened to have had a hormone panel done 4 months before starting the drugs for an unrelated issue and it was normal. But I got another identical lab panel done just to see and found a remarkable change in my hormone levels. I immediately stopped the Rifampin (after seeing posts on this site that Rifampin is of questionable value in MAC anyway) and retested 1 month later and found my levels were completely back to normal, at the same time my male "symptoms" were completely back to normal. I realize this information is anecdotal with no science backing it up, but it is a side effect that definitely affected me. Bill

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@poodledoc Thank you for sharing something that is so personal. Us ladies have discussed all kinds of similar things in the past. We are among friends here, and your post may help someone else experiencing a similar situation. I am glad that things are getting back to normal for you. I wish I could say the same. : (

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 1, 2020
In reply to @tdrell "debminuet…..go to You Tube and type in "Gwen Huitt and side effects of NTM treatment".....should be..." + (show)
@tdrell

debminuet…..go to You Tube and type in "Gwen Huitt and side effects of NTM treatment".....should be several tapes of it...one is 5 months old...some older....hunt around and you will find a lot of info re NTM etc....good luck...l am not proficient with the computer hence cannot put links on this email...tdrell

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Hello Terri! You and I haven't chatted in awhile. How have you been doing? How are you keeping busy during covid?

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