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MAC antibiotics and side effects
Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we're told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!
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@kgddean ....Windwalker is correct about testing and Dr keeping an eye on your responses while on meds....you might also check with pharmacist for info. Keep a log and share anything new occurring with Dr. Have you watched on ytube the videos from patient centered workshops from National Jewish Health. The ones from 2016 had lots of info on drugs. Tdrell
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1 ReactionWhat drugs and doses were you on and what did they increase them to?
I have gotten to about 2 months so far. I thus far am not having too many side effects and I hope it stays that way. I was scared to start but I am hoping they are doing the job until we get better options. I answered to that survey on line but I think it disqualified me when I answered the question if I or a family member works in the medical field. Cuz after I answered it it stopped. I don't think that is fair at all.
I'm not on antibiotics...would help if I could!
Hello everyone my name is Carla. I am new to the this forum and saw that most people were told by their Dr to have baseline eye exam. I would like to know what that is exactly, baseline? Is that more that a routine eye exam?
My ID Dr. Just said to have a basic eye exam done and I did. I asked if there was anything special I need done at this exam or would a eye exam from like WalMart be ok. He just repeated saying complete eye exam.
I have no insurance and as you all know this MAC treatment can be very expensive.
Have anyone of you tried to get SSI or Disability because of this illness? Thank you for your help and guidance
If you are under 65 you can apply for disability. You can also start SS. The baseline eye exam is just what you would get when you have your eyes checked - including dilation. What they mostly want is a color blind test. In Tennessee I wasn’t allowed to drive (hey that might be cause for disability)because one of the meds may cause a change in what you see (ex. A green light when it is really red.) I am ok to drive in Connecticut and haven’t had a change in my eyesight. Walmart should be able to accommodate you. Good luck!
You can apply for, and eventually receive SSDI once your doc says you can no longer manage "gainful employment" as a result of whatever it is...a chronic lung infection is probably one of the illnesses covered. Best way to find it is to first ask you doc about your level of function and if s/he agrees that you are permanently disabled. If the answer is yes, see a SSDisability attorney who will take your case only if s/he believes you have one that will eventually win as they work on contingency. Worth a shot!
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1 Reaction@irene5, thank you so much for your information of the entire eye exam. I don’t think my ID Dr. Has ever had a MAC patient. He told me to have a eye exam and I did. He then removed me off Ethambutol due to the terriable problem of not being able to breath with out nearly passing out and losing total control of my bladder during all this. He told me to also have another eye test to see if my eyes were effected and I asked him exactly what he was looking for with this test and I don’t think he truly knew because he said I need the eye Dr to tell me if your eyes have changed. This print out he gave me says I should have a “funduscopy photograph done periodically. Did anyone else have this type of photography done on your eye exam?
@boomerexpert, thank you for all your information.
@carla1196 , have you had a spirometric breathig test? If the results show that you fall within a certain level, it is easy to get disability.