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MAC & Bronchiectasis | Last Active: 4 days ago | Replies (9354)Comment receiving replies
Replies to "Just started on 1/2/17 azithromycin, ethambutol, and rifampin. Feeling extremely nervous; high blood pressure; horrific insomnia..."
Hello @128128terry11t,
Welcome to Connect. I am so glad you found us, and I want to assure you that you have come to the right place for support, information, and good wishes.
We have a large MAC/MAI community, so you may wish to start by viewing past messages and discussions here: http://mayocl.in/2cwX36M
In the meantime, please meet @david1952, @lindam272, @krz4ua, @josephene, @laneyk, @imeehaigt, @kaystrand, @tdrell, @dianeray, @jilligirl, @liliane, @chinasmom, who will definitely have more insight for you.
And last but not least I would like to introduce you to one of our wonderful Mentors, @katemn; you are in good hands now!
Hi @128128terry11t,
I would also encourage you to view these videos from National Jewish Health (2015 and 2016): https://www.nationaljewish.org/ntmvideos2016
You will find another great ongoing discussion on Connect (NTM/MAC/MAI: We must advocate for ourselves), here:
http://mayocl.in/2i0OkPw
@128128terry11t, may I ask what led to your diagnosis?
I see that many of you started the antibiotics one at a time. I, unfortunately, was put on all 3 at once by my local ID doctor. I am due to fly to Denver for appointment of 1/16 with Dr. Drummond. I originally was scheduled with Dr. Daley and spoke with his nurse who told me I could go on meds before coming to Denver. Hope that that won't foul up what they need to do.
I am experiencing great difficulty with insomnia and somewhat high blood pressure and tachycardia. Nobody else seems to report those kinds of symptoms. First diagnosed in 2007 with MAI and bronchiectasis (went to ER because of hemoptysis -- love these fancy terms -- sounds better than coughing up blood )and have been followed since then. Seems that my turn has come for the "treatment". I am on so many other meds; thus, concerned that there may be some interaction going on. Awaiting results of thyroid test on Monday. Would love that to be the case but I have been told by my primary that it makes no sense and I haven't been on treatment long enough. I insisted that it be checked anyone. We must be our own advocates. I will call Denver on Monday and tell them what's going on and ask for advice as to how to proceed before I see them. I have a feeling that I will meet many wonderful people on this site. Words are inadequate for me to express my gratitude. You can even google my name so that you know that I exist as a real person. I am from New York so we are all paranoid! Bless you and your kindness. I look forward to getting to know so many of you more.
Cant seem to edit my reply and am terrible at computer skills. Forgot to mention my name since I invited you to google me.
It is Terry.
Terry - My doc said to wait a week before starting each new med. It is not only kinder to our bodies, but allows us to identify which med is causing any side effects we may be experiencing. I began the Azithromycin around mid-Dec., asked if I could wait to until the day after Christmas to start the Ethambutol since I was feeling okay and didn't want to mess up Christmas plans, so began that 12/26 and today just took my first Rifampin. I waited until I got back in town so was a few days past 1 week as I didn't want to start while out of town. This has worked well for me so far. Linda
Hi @128128terry11t,
Thank you for all the information you have shared, and we are so glad that you have chosen to be an active, participating member of the Connect community.
Please note that I removed your personal email and address from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding, and we look forward to getting to know you more.
Words are inadequate to describe my gratitude. I hope that this doesn't sound trite. I am reading the posts, getting loads of tips, and most importantly being inspired to be positive and to see the light at the end of the tunnel (hopefully not a train-must have humor or it would be all over) with all the side effects that I am experiencing as I begin the treatment. I started all 3 antibiotics at once as prescribed by local ID. So many started one at a time -- great idea but too late for me. Hopefully, someone else will benefit from sound advice. So excited to be going to Denver. Right now I am medicating the nervousness and tachycardia away. Insomnia seems exempt from any of my drug interventions. I am on a zillion meds so will have to figure out a way to take the rifampin in the am instead of bedtime. Sounds like a great tip.
This discussion board is going to be a life-saver for me. Thank you for helping the intense apprehension and fear attached so commonly to beginning the "treatment".
I wanted to post privately but could not manage to figure out how to do so. Thank you for the removal. Will get someone to show me how to privately post. I have this crazy user name because website refused to accept some simpler version. Thank you for getting back to me. I am certain that we will be in touch.
Great idea for me as I am having some unpleasant side-effects and don't know which med is causing it. May have to reverse the procedure but will wait to be advised by Denver. thank you. We're starting this journey together and I look forward to the support that I and others I am sure, so desperately need. Thank you.
Good Morning, @128128terry11t, and Welcome to the Connect community. I know that you will receive lots of support from many of our members - our Lung discussion group has been a very active and supportive one.
I am not experienced in lung health, but as far as your new medicine reactions, I know that all of us can have a variety of respo0nses to different medicines. "Tweaking" under your doctor's supervision is often necessary. And the fact that you were told that tweaking might be necessary, is a perfect reason to make a call to your doctor, or your pharmacy. It is possible that the timing of your doses, or before/after meals , or dosage adjustment might be helpful. I hope you feel better soon! Rosemary