pamelasc
@pamelasc1
@pamelasc1
Posts: 103
Joined: Feb 25, 2016
I was diagnosed with MAC in May 2015.
Hello – I have just joined the group – I was diagnosed with MAC in May 2015. I began the treatment of the 3 antibiotics 3 times a week in October 2015. I plan to stay with the treatment for the 18 months, or longer if I have to. I am 66, thin, 5′ 7″ and also have bronchiestisis. My question is: when taking these meds, my sinuses act up off and on – lots of nasal drip and then it goes into my sinus as if I have a sinus infection. It lasts for a week or so, then goes away. It comes and goes. I think maybe it is the Rifampin, but not sure. Does anyone else have this problem? Many thanks, Pamela in the Boston area
tessie
@tessie
@tessie
Posts: 41
Joined: Apr 27, 2016
Did you tell your doc you’re taking medication at night? Mine told me take
medication in the morning. I take them with food, and with lunch. It’s the
best I can do as I just don’t feel well for 2 hours or more with the
dosage. I don’t take them all at once with food, but in between food on the
top.
I have fatigue effect sometimes.
And, I like wine. I take a drink on OFF meds days. Pharmacist told me no
alcohol. I think within reason.
—
*Gayle*
Liked by Ali Skahan
@pamelasc1 and @tessie — I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don’t know the correlation. There is also some connection to low levels of Vitamin D.
take with food!- I heard an expert say- if your urine is turning orange- enough is getting absorbed to work so take with food to minimize upset stomach
tessie
@tessie
@tessie
Posts: 41
Joined: Apr 27, 2016
@pamelasc1 and @tessie — I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don’t know the correlation. There is also some connection to low levels of Vitamin D.
yup, urine is orange. I have follow up doc appt on June 29. They asked for three ‘sputum collections’. I’m able to cough just a drop each. Hopefully it’s sufficient. I want to avoid CT scan due to radiation. Thanks for writing to me.
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@pamelasc1 and @tessie — I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don’t know the correlation. There is also some connection to low levels of Vitamin D.
Tessie, I don’t know if it would make a difference for you .. but because of my coughing my Dr. Aksamit has me on two inhalers .. Qvar and Atrovent. I find that first thing in the morning before eating or drinking .. if I use BOTH inhalers .. 2 puffs each .. it causes me to cough up more sputum than usual so that I can mail in a sputum sample to Mayo Clinic more easily. Otherwise I am not always able to create the amount of sputum necessary at the Clinic .. that specimen comes back marked “Too Scant” or something like that. So if you use an inhaler and it makes you cough .. you might try my pattern of 1st thing in the morning?
Mayo Clinic gives me a shipping box that I FedEx to them with the sputum sample (placing a freezer thing in it for refrigeration). Hope this idea might help you? Katherine
Liked by Ali Skahan
tessie
@tessie
@tessie
Posts: 41
Joined: Apr 27, 2016
@pamelasc1 and @tessie — I noticed a similar thread in your posts. You are both thin or slim, middle aged women. When I was diagnosed, my pulmonologist told me that the latest manifestation of MAC/MAI is in thin, middle-aged women. Seems to me, what we have in common is changes in hormones. Doctors just don’t know the correlation. There is also some connection to low levels of Vitamin D.
Thank you very much! I’ll ask my doc
I’m so glad you told me.
thanks
Gayle
Liked by Ali Skahan
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
@justjanet
Janet, I am SO proud of you! You are doing SO well! You are being so organized about your game plan .. and then just DOING IT!! You had a Plan A .. that didn’t work out .. so you are going to Plan B .. PLUS you also have a Plan C .. this is SO great!
I think an Infectious Disease Specialist at Duke whose focus is on MAC .. PLUS he publishes on that as well is a GREAT Plan B! Just google your local Pulmonologists and see if one indicates he specializes in Bronchiectasis .. if you google their names enough times sometimes you can get a bio that shows areas of interest or papers they have published that may show that.
So, I just think you are doing so great! I am hoping you don’t mind if I post my reply on our Forum .. BECAUSE I am so proud of you and how wonderfully you are doing! You go girl! Sending you a Hug!
Katherine
Sophie
@sophie1019
@sophie1019
Posts: 97
Joined: Jul 07, 2016
Colleen Young, Connect Director
@colleenyoung
@colleenyoung
Posts: 9153
Joined: Jul 23, 2014
Sophie. We have quite a few members dealing with MAC. You’ll find them all in the Lung Health group. I moved your message here so you can meet @katemn @justjanet @tessie @turtle3656 @jillnalani @Paula_MAC2007 @janovr @pamelasc1. I see you also posted to the big forum with many more members here:
MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE (MAC/MAI) https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
Other discussions are also happening here:
MAC – Get a second opinion! https://connect.mayoclinic.org/discussion/get-a-second-opinion/
How long do side effects of meds last? MAC https://connect.mayoclinic.org/discussion/how-long-do-side-effects-of-meds-last/
Welcome.
tessie
@tessie
@tessie
Posts: 41
Joined: Apr 27, 2016
Katherine or anyone else in the group – has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it – it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam
Same here. My doc doesn’t like FIITNESS CLUB steam rooms, whirl pools or showers. I believe your hot tub jets should be cleaned by professional first – then you will learn the best method. As above, Doc said ‘stay out of it’. And, I mentioned boiled water. He said ‘he wouldn’t go overboard’. I drink plenty of water on those pills. I’m trying to flush out. Thirst – so I bought biotène moisurizing mouth spray at the drug store I find useful. Meanwhile, the last three sputum tests I submitted each were barely drops. It was sufficient for them to obtain results. Good news. The disease isn’t growing. Eleven (11) more months of antibiotics to go (I hope). We must do what the Doc says./Gayle
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Katherine or anyone else in the group – has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it – it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam
Tessie, so glad the MAC is not growing! What good news! I agree we must do as our trusted Doctor says and hopefully come out on the end as I did May 2014 as stable!!
I also use Biotene .. both the spray and the gel for at night time .. I find it helpful too. Best to you! Katherine
Sophie
@sophie1019
@sophie1019
Posts: 97
Joined: Jul 07, 2016
Katherine or anyone else in the group – has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it – it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam
Hi – I was very reluctant to start taking the meds. I was a total emotional wreck. I was at home crying, then coming to work crying. I did not want to be taking these drugs for 12 months. Then my friends started to pray for me, and I thought “this could have been a lot worse”, so I went home and took my first dose. I take my meds in the afternoon. When I took my first set of meds (3 different type of pills), I ate oatmeal with them. I had to go to the bathroom 2 times. My stomach did not hurt. So, hopefully, I am praying everything goes okay and I am trying to keep a positive outlook. Remember, anxiety just makes things worse. And always remember to pray over your body and ask God to heal you……I also will keep every doctor’s appointment, from lab work to sputnum tests, to seeing my eye doctor. I will also exercise every day, even though I exercised even before I knew I had MAC. So please stay encouraged everyone, and I will pray for everyone, that we all are healed!!!!!
Katherine, Alumni Mentor
@katemn
@katemn
Posts: 1501
Joined: Nov 21, 2011
Katherine or anyone else in the group – has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it – it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam
Sophie, it sounds like you have a plan in order .. and are following that plan .. good for you! Just keep up the positive attitude and you will get to the other side just fine! I did and I am doing just great since May 2014 .. just keep on keeping on! Sending you a hug! Katherine
Kay Strand
@kaystrand
@kaystrand
Posts: 131
Joined: Jul 28, 2016
Katherine or anyone else in the group – has anyone been told not to use their hot tub? And do you know if you can have the water tested? My doctor told me not to use it – it is outside, which is better than being enclosed. Does anyone have any experience with this part of your diagnosis of MAC/MAI? I gather that the water and mist can harbor the bacterium but I really am reticent to give it up entirely. Hopefully someone has some experience with this. Thanks, Pam
Sophie still feeling good. I was diagnosed with MAC in upper right lung, cavity.
Started my first dose of the big 3 last night. I’m trying not to be anxious reading all the terribly negative things about the drugs. I’m determined to take them unless vision, hearing, liver or kidney problems develope.
Let me know how you are doing now on the meds 3 weeks in right?
I hope we’ll, I need a good story.
Thanks
Kay
Kay Strand
@kaystrand
@kaystrand
Posts: 131
Joined: Jul 28, 2016
In Nov. 2015, I began 3-antibiotics, 3-days per week. Every Friday (the third day of meds) I suffered many bathroom poops. I complained & doc changed one of the antibiotics. I feel better other than common symptoms associated with MAC. I am 67, tall and slim. Eighteen months medicine is a long, long time with no guarantee. Doc said he thought I got it at my fitness club. (shower head, whirlpool). They say online it’s from municipal water. Health Canada doesn’t know the cause. Comments?
Yessir
Still on the meds and how are you doing? I’m just starting this weekend, so need some good feedback!
Thanks
Kay
@jillnalani
Hello, I recently started on the 3 antibx for Mac treatment. I take mine at bedtime to make the nausea a little more manageable.