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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm having a difficult time with the side effects. Upset stomach, depressed appetite, lethargic. Yesterday I broke out in hives, my entire body is bright red. The irony is that till I started the drugs I felt perfectly healthy. I've always exercised, eaten lots of fruits and veggies. I feel the drugs are too strong, have asked the Dr to consider three days a week, not daily.
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Replies to "Was recently diagnosed with Mac and two weeks ago started three drug therapy every day. I'm..."
Susie I so identify with you. Tried the meds twice. Ended up in the hospital twice. I live in the Atlanta area and we have our first support group meeting on the 24th. I am anxious to hear how others cope with this crazy disease that no one has ever heard of! I will report. Jan
Please post the things you find out at your meeting please! This is crazy that there are so many with this stuff and no one has solid answers! Thanks! I am still soooooo puzzled how I got this........I have NEVER been sick and it is still a mystery why I got soooo sick......3 1/2 months after being bite on my left hand (actually broke my hand) I get this crud. Did this biter carry something that was transmitted to me????<br />
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I will plan to be there and will tell Mike, also. <br />
Thanks!<br />
So sorry to hear how sick the meds are making you. I was diagnosed 6mos<br />
ago, only symptom I had was coughed up small amount of blood. My pulmonary<br />
and infectious diease docs are just checking me every 3mos. I dread the<br />
thought of having to start on meds. I feel perfectly fine. Can't believe I<br />
have this! Prayers for you, hope theses side effects pass soon.<br />
Both Suzie and Digmeme, I can ONLY speak for myself .. BUT based on what you are going through .. I would only ask if your M.D. is WELL VERSED in MAI/MAC? Not every Pulmonologist is knowledgeable about MAI/MAC! It would scare the dickens out of me to go through this process if my hand had not been held by a doctor who specialized in MAI/MAC! I know they are hard to find because our disease is not that common .. but the drugs we must take are also not that common. So I would just say .. do your due diligence .. make sure your doctor is at the top of their game on your disease .. and remember that NO ONE cares about your body the way you MUST! You are given one body for this life time .. and you must take care of it like you would your child. Hope I don't sound like a Mom/Grammy .. but that is what I am .. can't help it! I just feel bad .. what you are going through! Sending you hugs!
Hey suzieapples, I've been thinking about you. How are you doing with your<br />
drug therapy? I hope you are better. I get checked again in July, hope<br />
there are no changes or I'll have to start drig therspy too! Hope to hear<br />
from you. Your friend Tutti<br />
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I am right there with you! I have been in the 3 drugs for 3 months and feel worse than I did before I was diagnosed! Do you use a Pulmonologist or Infection Control<br />
Doctor? My co-pay for the Rifabutin is $180 and I am in bed 16-18 hours after taking deathly ill......for at least 15 hours! Horrible! The APN took me off of this because I developed acute bronchitis. I started back on the Clarithromycin last week 3 times a week, Ethambutol last week and dread Tuesday coming where I start the Rifabutin! This is horrible! Even thinking about just going back to my family doctor.....cannot see where this Pulmonologist has done anything to help me!<br />
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