1. < MAC & Bronchiectasis

If medication worked for you, did you begin to feel better right away?

Posted by traceyk @traceyk, 6 days ago

I have two questions here.
My symptoms seem to be different than most. ??? I have lethargy, an achy body and a headache every time I wake up (like a hangover or what I’m guessing is lack of oxygen all night). I also have night hot flashes something fierce. My body aches are not crippling but it’s getting very hard to motivate myself to do any walking or exercising outside of work. I used to get up at five am full of P and V but now I don’t even want to get up. If it wasn’t for work, I swear I would sleep all day. This has all steadily happened in the past three or four weeks. Treatment is starting tomorrow (on my days off), but I wonder, are there many people like me who found out accidentally without a breathing problem beforehand? If so, did they find themselves aching, sore all over? Gradually feeling chest heaviness? I started coughing a bit yesterday but not sure if that was just from all the wood smoke from chimneys in my area (rural area).

AND, second question, if medication worked for you, did it get better slowly? Like over months? Or did you begin to feel better within a few weeks like you would on regular antibiotics?
It’s hard to get psyched up for such a long term thing.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

bbeers | @bbeers | 2 days ago
In reply to @traceyk "Barbara, it’s possible this pinching is related. Hope it’s not an infection. I actually thought I..." + (show)
@traceyk

Barbara, it’s possible this pinching is related. Hope it’s not an infection.
I actually thought I had unbearable back muscle, etc., pain and quit a job I had because of it, and within three weeks I discovered the pain that also went UNDER MY RIGHT SHOULDER blade was related to me having Pneumonia. In fact, two days after my NTM diagnosis came back from a bronchoscopy to rule out lung cancer, (I had breast cancer and bilateral mastectomy in Jan 2023) I ended up in the hospital coughing up blood and really unwell. Flash ahead a few months, PICC line removed, indigestion/reflux calmed down—cause I’m on twice a day pantoprazole and have the head of my bed elevated, and my CT shows the pneumonia infection is almost gone but MAC had taken over its place.
I am positive the back pain I felt was related to the pneumonia. The large cavity was directly under where my pain was. I don’t see how that pain magically disappeared when massage and physiotherapy didn’t help it. Haha.
Make sure to inquire about this pinching pain. Rule out stuff.
As for your pulmonologist’s mention of there being no pain, I disagree.
On smoky days, when the chimney smoke hovers around my neighbourhood, my chest hurts. I know the reflux made this feeling worse too. Also, my muscles and joints hurt most of the time now. I’m sure our fellow patients with Bronchiectasis can offer up a little bit more of their info about pain and their situations too but in my opinion, if MAC doesn’t cause pain, its symptoms and side effects do. Cause aches and pains are in my portfolio.

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Hi TraceyK,

Thank you for getting back to me. I just started taking pantoprazole 4 days ago. I see my family Dr. next week and the Pulmonologist in March. I did a little research on whether you can have gallbladder issues after having it removed. It said you can even years later, especially if they removed it laparoscopically. That is my case. It just seems like I get this pain after I eat. I'm 76 and feel pretty good. I get out and do things, so MAC hasn't stopped me yet. You've been through so much, I admire your strength and positive attitude. God Bless you.

REPLY
coder | @coder | 2 days ago
In reply to @traceyk "Barbara, it’s possible this pinching is related. Hope it’s not an infection. I actually thought I..." + (show)
@traceyk

Barbara, it’s possible this pinching is related. Hope it’s not an infection.
I actually thought I had unbearable back muscle, etc., pain and quit a job I had because of it, and within three weeks I discovered the pain that also went UNDER MY RIGHT SHOULDER blade was related to me having Pneumonia. In fact, two days after my NTM diagnosis came back from a bronchoscopy to rule out lung cancer, (I had breast cancer and bilateral mastectomy in Jan 2023) I ended up in the hospital coughing up blood and really unwell. Flash ahead a few months, PICC line removed, indigestion/reflux calmed down—cause I’m on twice a day pantoprazole and have the head of my bed elevated, and my CT shows the pneumonia infection is almost gone but MAC had taken over its place.
I am positive the back pain I felt was related to the pneumonia. The large cavity was directly under where my pain was. I don’t see how that pain magically disappeared when massage and physiotherapy didn’t help it. Haha.
Make sure to inquire about this pinching pain. Rule out stuff.
As for your pulmonologist’s mention of there being no pain, I disagree.
On smoky days, when the chimney smoke hovers around my neighbourhood, my chest hurts. I know the reflux made this feeling worse too. Also, my muscles and joints hurt most of the time now. I’m sure our fellow patients with Bronchiectasis can offer up a little bit more of their info about pain and their situations too but in my opinion, if MAC doesn’t cause pain, its symptoms and side effects do. Cause aches and pains are in my portfolio.

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I have pain in same location. I’m on month 17 of taking the big 3. Still having the pain.

REPLY
1 reply
reneemc | @reneemc | 1 day ago
In reply to @coder "I have pain in same location. I’m on month 17 of taking the big 3. Still..." + (show)
@coder

I have pain in same location. I’m on month 17 of taking the big 3. Still having the pain.

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When I was first diagnosed with MAC and bronchiectasis it was like a tight band around ribs . Then the shoulder blade pain was unbearable. Gabapentin and Hydrocodone help some. Frozen shoulder can be a symptom of lung issues.
I’ve had Drs tell me pain isn’t a symptom of MAC but my specialist in Tyler certainly knows it is .

REPLY
1 reply
traceyk | @traceyk | 23 hours ago
In reply to @reneemc "When I was first diagnosed with MAC and bronchiectasis it was like a tight band around..." + (show)
@reneemc

When I was first diagnosed with MAC and bronchiectasis it was like a tight band around ribs . Then the shoulder blade pain was unbearable. Gabapentin and Hydrocodone help some. Frozen shoulder can be a symptom of lung issues.
I’ve had Drs tell me pain isn’t a symptom of MAC but my specialist in Tyler certainly knows it is .

Jump to this post

This is interesting about frozen shoulder pain etc. from lung disease. I just assumed it was my breast cancer surgery that was the cause of that problem (it may be) but I’ll have to get on exercising with bands and correcting my posture again. I blew my rotator over 15 years ago when I had my garden/landscape business. Then blew the left and then again the right. Then the left. Since mastectomies it’s always an issue.
Sounds to me, as soon as I can tolerate these meds, I had best get onto a breathing and posture exercise program before its back to that nightmare again.

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