Seen my pulmonologist about MAC

@michaeld1 I'm sorry I can't answer your question because I also have COPD and last CT shows bronchiectasis. I am curious though, why he took you off meds with steroids. Did he give you an explanation?

He said that the steroids lowered my immune system to much. Now he did give me other inhalers they seem to be working. I have copd also I need those meds. He hasn’t dealt with MACK patients .

That makes sense. Glad the new inhalers seem to be working for you. I wish you the best!

Oops, with this remark "Doesn’t thing the 3 meds are that bad to take." he loses my vote for doc of choice to treat MAC. Even my less than empathetic old pulmonologist said "I won't lie to you, this treatment is going to be hard on you." In your position, I might be looking for someone with experience in treating MAC if you have that choice.

Are you near any of the medical centers who are experienced in MAC - National Jewish Health, Mayo, University of Texas, Tyler and several others?

Are you male? Do you have any cavitation? I think he is right on all counts. Shortness of breath is one of our major symptoms. Unless you have asthma, NO steroids. Your 2 things to avoid at this point is adding a fungal infection or a cavity.

I wrote some time ago that my pulmonologist was ok with me nebulizing cromolyn sodium instead of Budesonide which is a steroid. It used to be used for mild to moderate asthma and it’s an anti inflammatory. Since steroids are so effective they are prescribed. Cromolyn is an older type of medication not much popular any more. It works except that you have to nebulize 4 times a day. Ask your pulmo about it.

I am male, no I don’t have cavitation. I do have me a brand new nodule. I have to a mass in my lung they were sure was cancer it was not. That is how they found MAC.
I had a very bad case of valley fever in 99 because of it lost 2/3 of right lung. I told all my doctors about this and they thought to just blow me off.
I’m going to Henry Ford Monday to see ID doctor. I live north of Detroit and it’s not a good place to be if you have health problems.
I believe I’m getting better because I just took a shower without oxygen. But I have to get back on my Eliquis fast been 2 weeks now. Thanks
Mike

I will thank you

Nodule questions are:
What size? Greater than 1 cm is a concern
Is it spiculated?
Is it fast growing?
Have you had a recent PET scan?
Good Luck my friend, Rick

I went to Henry Ford Hospital yesterday. What a totally different experience for the better. My new ID disease doctor is a gift! She is upfront about what I could potentially run into. She changed the rampafin to on that’s easier to take. I as right that nasty stuff was effecting all my meds. She had to get my blood pressure down and was threatening to put me in hospital. It work out, I got answers to my question. Also found out I was still withdrawing. I went seen a pain doctor this was from my rheumatologist and was but on buprennorphine I didn’t want to try a true narcotic because of the prejudiced from other doctors. It’s working. Long road ahead but many of you are miles ahead of me and I wish you all the best! Yes it can cause shortness of breath also chest pain. Thank you all!