MAC Big Three Side Effects

Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC. I've been to so many doctors, and the nurse practitioner at my pulmonologist's office is who figured everything out! As a nurse, I'm really proud of her! I'm starting Immunoglobulin G monthly infusions Wednesday. My Infectious disease doctor wants me to have a few infusions in me before starting my MAC treatment. Side effects from both the infusions and the MAC treatments have sure been on my mind. Learning from others has been a huge help, especially what they're experiencing and how they deal with it. I sure do appreciate your response and your advice. God bless you.

Wow! that's very interesting. I have a pulmonologist who discovered the Primary Immunodeficiency AND the MAC. I've been to so many doctors, and the nurse practitioner at my pulmonologist's office is who figured everything out! As a nurse, I'm really proud of her! I'm starting Immunoglobulin G monthly infusions Wednesday. My Infectious disease doctor wants me to have a few infusions in me before starting my MAC treatment. Side effects from both the infusions and the MAC treatments have sure been on my mind. Learning from others has been a huge help, especially what they're experiencing and how they deal with it. I sure do appreciate your response and your advice. God bless you.

Thanks so much for your response. I hope you have conversion soon. God bless you.

I was on the big 3 @age of 59. Multiple pills 3 times a week. I had bad stomach cramping, diarrhea & nausea. & no energy. I lost 30 pounds. I had to experiment with different foods. I did eat a lot of Greek yogurt, drank ginger tea, ginger soda, sucked on ginger candy. Having a healthy breakfast helped. By evening things weren’t so bad. I took early retirement, otherwise I wouldn’t have been able to complete the 18 months of meds. Wishing you the best!

Actually, I should have mentioned, I converted to negative after less than 4 weeks on the daily Big 3 plus Arikayce regimen. I have been negative for 7 months in a row, so I should be able to get off the meds in August.

How did you find out about your primary immunodeficiency? And do you mind me asking what it was? My ID doctor wants me to see a immunologist. I just haven't seen one yet because I just had to have major surgery and this is all happening so fast, I only found out I had this a couple weeks before my surgery! My ID doctor told me that he wants to try to figure out why I got the MAC since most of the time people that get this have some sort of compromised immune system. This is very confusing for me because I don't know what it could be?! If you have any info please share! Be really interested to know. Hopefully the immunologist will be able to help!
Angela

I don't mind answering at all.

For over three years I have been getting lower respiratory infections constantly. I'd get on antibiotics, feel better for a week or two, then get sick again, over and over.

My PCP sent me to a pulmonologist. I saw his nurse practitioner. She is wicked smart! I also went to an immunologist, who just tested me for allergies. I felt like he was very lacking, to put it mildly.

The pulmonology nurse practitioner listened to my lungs and was certain she heard bronchiectasis. This prompted her to do LOTS of lab work. I'm not at all smart in this area, but the best way I can describe it is that she looked at all the labs, which led her to do more labs. She checked my immunoglobulin levels. There are five kinds of immunoglobulins, M, D, E, A and G. G has four sub classes. I was very low in three of the four. The way to treat this is with monthly Immunoglobulin G infusions.

During this time, I got sick again. She had me send a sputum sample to the lab. It came back with a staph infection. She treated that. About a month later she called me. The same culture then showed MAC. She then sent me to an Infectious Disease specialist.

The ID doctor had me submit two more sputum samples, one week apart. She also ordered a chest CT. I've done both sputum samples and am waiting to do the chest CT. The ID doctor said these three tests are pretty much just a formality since I did have it show up on a prior sputum culture. But they certainly don't want to subject anyone to the MAC treatment without absolute proof. She said she wants me to have a few infusions in me before I start the big 3 antibiotic therapy.

I'm just praying for minimal side effects from both the infusions and the MAC treatment. I hope this helps you. Sorry if I'm not 100% accurate in my description, but I'm close 🙂

Wow! Thank you so much for all the great information you gave me. I do understand what you're trying to explain, You did a great job at it actually! I am hoping that they get to the bottom as to why I have this also, So that gives me hope they can figure out why I would get this! It gives me hope they will figure it out.

It sounds like you have doctor and nurse It sounds like you have a doctor and a nurse practitioner that really is thorough and wants to solve the problem. You're really lucky!

I have not had a lot of infections or anything in my lung. I just woke up on night and coughed up some blood. And it never happened again. I went to the ER of course. And that's where they found a 5.7 cm mass that now has turned into a cavity. I have had this for a while! I hope I have someone that tries to get to the bottom of things a little bit better! I also have a pulmonologist, although I believe he is let the infectious disease doctor take over at this point.

I was looking at the immunoglobulin results They ran on me that's in my chart online. I'm not in the normal range for a couple of them, they're flagged. Yikes! I wonder what that means!?

I've been on the antibiotics a couple of weeks now and I haven't had any problems at all. I just eat with them and they don't make me sick or anything. Hopefully you'll be the same way. Generally I don't tolerate antibiotics very good, these are supposed to be really strong but I really am not having any problems with them at all! I think you're gonna be just fine😀

Thank you so much for all the great information after you mention those tough I remembered he ran those seemed test on me so I can kind of look and try to figure things out online I guess. At least I can get Explanation as to what each 1 of these Immunoglobulins are!

Thank You

Angela