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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
windwalker -- thank you for asking. I a, trying to do 30 days of toby right now. Just finished my second week. First attempt was not great -- I had trouble breathing and came off in 3 weeks. Waited about a month and want desperately to make it work. So, I'm trying again. There is some MAC in my sputum testing and Mayo doctor says if we can't stop some of the cough and phlegm with toby I may need to do the dreaded course of 3 antibiotics. I'm trying...…. I've lost a little weight and feel weak but at 78 years I assume I won't feel like a teenager. Incidentally, for other's info also, I got my first month's supply of toby at the Mayo pharmacy and they told me they were able to put it through on my Medicare B. It was cost-free to me. This time, I asked doctor to send script to my closer pharmacy -- Walgreens -- and they said they could not get it on Medicare B and they wanted 1100 dollars for a month's supply. I went back to Mayo Pharmacy and they sent it in cost free again. Don't know I this might help anyone but thought I would share the story. I'm happy to answer any questions I can if I can be of help to anyone. I'll be interested in whether your friend is still doing the bronchoscopies (sp).
Replies to "windwalker -- thank you for asking. I a, trying to do 30 days of toby right..."
@auntnanny and all, tobramycin has to come from a Specialty Pharmacy. Both Walgreen's and CVS has them. Those specialty pharmacies cater mostly to chronic diseases like Cystic Fibrosis because the meds are so expensive. Walgreen's charged me $2500 for a 30 day supply of Toby. My co-pay on that was $500.00. Gratefully, the Healthwell Foundation pays that for me. I now get my tobi fromCVS specialty pharmacy and I believe they have a better contracted price on it.
Auntnanny. Saw my doc today. Asked him about Toby and he said it was made to target pseudomonas rather than Mac. He gave me a pamphlet about an inhaled antibiotic called Arikayce, a liposomal form of the antibiotic amikacin. He is ordering me a bebulizer with saline and said to continue using the Resprivest morning and evening. This is time consuming when I need to be at work early in the morning. I have also ordered the broncolin/propolis cough syrup which is due to arrive in 2 days. I am to consider the risks of the Arikayce and let my doc know if I want to try it. It can cause allergic inflammation of the lungs and hemoptysis which can be “common” side effects.
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To auntnanny. What is Toby?? I am couching so violently that I vomit. And my nose gets stuffed up as well. I have been taking tessalon pearl but it doesn’t seem to be doing the trick anymore. I am interested in anything new that does not interfere with my heart meds or agravate my afib. I have both bronchiectisis and Mac. I recently coughed so hard that I injured my ribs and when I cough now it causes pain in my ribs and chest.