Starting point!!! Recomendations?
Dear fiends,
Finnally, yesterday the microbiologist +pneumologist decided I must start treatment. I am fine, but cavitation, hemoptisis.....
Treatment 1 year for the moment, rifampicina 300 mg, etambutol 400 mg, azitromicina 500 mg.
A bit scared about the potencial allergies and secondary effects.
Any advice?? And somebody in Spain or support groups in spanish?
Thanks a lot all and all the best for everybody
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@aliciagarper I am glad you have found the MAC & Bronchiectasis group at Mayo Connect - I like to call it "the best support group you never wanted to need." While I cannot offer any specific direction to a support group in Spain, you may be able to find one here:
https://europeanlung.org/en/people-and-partners/elf-patient-organisation-network/
As for taking the medications, you can go to the top of this discussion, click "MAC & Bronchiectasis" then at the home page, enter key words in "Search Discussions" for a list of posts on the topics you want to learn about.
Here is a current discussion on this exact topic:
https://connect.mayoclinic.org/discussion/just-started-the-big-3-for-my-mac/
Have you been able to find a doctor well-versed in treating your infection?
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5 Reactions@aliciagarper Looks like we are both starting the treatment journey this week and I hope it goes well for you.
I am located in Portugal and would be happy to message directly with you if you wish.
Paula
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5 ReactionsThe NTMInfo site has a Spanish support group on zoom. It's in the list of support groups they run on the link below. I don't know how much international participation they have but I wouldn't be surprised if you find others in Spain. All best wishes!
https://connect.ntminfo.org/home
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4 Reactions@sueinmn
Thanks a lot!! A lot of information!!!!!
Great because I am a bit lost.
Fingers crossed all will be fine. Following some of the recomendations, I started with the Rimpamicina in the morning and I will take Azitromicina+Etambutol at lunch time. I want to do it with dinner, to be slept in case of nauseas, or else, but as I want first to check there is no allergies, I will do it lunch time and if in one month all is fine I will try to change to dinner.
My problem was that I was diagnosed with cavities and mycobacteria avium on february, but as I feel fine and not a lot of sympthoms, and I can do sport (swimming, running, bike), and I take part in competitions, the doctors were reluctant to start treatment. I found a pneumologist expert in bronchiestasis and she +the mycrobiologist decided that I must start, so.... here I am!
Thanks a lot for all
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3 Reactions@lvnl
Thanks a lot! I will contact
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1 Reaction@paulastevens
Great Paula!!!
Thanks!
Fingers crossed the treatment will be well for both of us!
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Alicia. Many if us who went through the treatment started the 3 antibiotics gradually not all at once. May be there is still time to ask you doctor about it.
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