Covid shot, MAC, and Smbacort

Posted by Cathln @Cathln, Sep 13, 2023

I am taking generic Symbacort, 80/4.5 2 puffs morning, one puff evening. I have gotten every Covid vaccine and booster, so far. But I wasn't on this drug. Is anyone else on symbacort and still getting the Covid vaccines. Pulmonologist said it won't interfere with vaccine. I am also worried it will start up the MAC, although NJH said its a small dose, and doesn't go deep.
I appreciate any help. I worry constantly That is why I'm only on one puff in evening. It doesn't go well with ativan. At least, not for me.

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@Cathin
Let me see if I understand your questions.
You want to know if there is any problem having the Covid vaccine while using Symbacort? Not as far as anything I have read, and I got my last booster while using it - no problem. Now that the updated vaccine has been released, I will be getting in line at my clinic as soon as they have.

As for using Symbacort and the increased risk of developing MAC, my pulmonologist and I discussed it at length. I stopped antibiotic treatment while still testing positive (MAC knocked down but not out) so I was concerned about it flaring. My asthma was poorly controlled, I was chronically short of breath & had pain on exertion, so it was hard to get the exercise I needed. On a risk/benefit scale, the ability to breathe better, feel better & exercise was a HIGH benefit. The uncertain possibility of reinfection was a LOWER risk. So far, at 20 months, my breathing is better, I use FAR less rescue inhalers and Levalbuterol nebs, have only had 2 mild exacerbations, so I view it as a win. Next lung images due in December, so we'll see if everything has remained stable.

Every individual with bronchiectasis and MAC is different, so the decision must be made by you and your doc based on your situation.

Sue
Sue

REPLY
@sueinmn

@Cathin
Let me see if I understand your questions.
You want to know if there is any problem having the Covid vaccine while using Symbacort? Not as far as anything I have read, and I got my last booster while using it - no problem. Now that the updated vaccine has been released, I will be getting in line at my clinic as soon as they have.

As for using Symbacort and the increased risk of developing MAC, my pulmonologist and I discussed it at length. I stopped antibiotic treatment while still testing positive (MAC knocked down but not out) so I was concerned about it flaring. My asthma was poorly controlled, I was chronically short of breath & had pain on exertion, so it was hard to get the exercise I needed. On a risk/benefit scale, the ability to breathe better, feel better & exercise was a HIGH benefit. The uncertain possibility of reinfection was a LOWER risk. So far, at 20 months, my breathing is better, I use FAR less rescue inhalers and Levalbuterol nebs, have only had 2 mild exacerbations, so I view it as a win. Next lung images due in December, so we'll see if everything has remained stable.

Every individual with bronchiectasis and MAC is different, so the decision must be made by you and your doc based on your situation.

Sue
Sue

Jump to this post

Hi, Sue,
how long did you take antibiotics I wonder. I saw my ID doctor yesterday and she said I would be taking antibiotics for two years (I started in April 2023) and then she will order bronchoscopy and ct scan. No sputum tests either- that is her idea of treatment MAC. The indication that meds work is how I feel. I am just sitting and thinking that I have so many questions now- yesterday I was not prepared for this info so I will address my concerns during the next visit, I guess.

REPLY

Unless you have asthma, try to get off Symbicort (it is a steroid). I was on it for 3 1/2 years and after clearing MAC, then developed a severe fungal infection in my lungs. One Dr added spiriva respimat. Taking both was a struggle so I tried one then the other and I started getting better with just the sprivia and took myself off Symbicort. All 3 of my Doctors agreed with my decision and removed Symbicort from my prescriptions.

REPLY
@lilianna

Hi, Sue,
how long did you take antibiotics I wonder. I saw my ID doctor yesterday and she said I would be taking antibiotics for two years (I started in April 2023) and then she will order bronchoscopy and ct scan. No sputum tests either- that is her idea of treatment MAC. The indication that meds work is how I feel. I am just sitting and thinking that I have so many questions now- yesterday I was not prepared for this info so I will address my concerns during the next visit, I guess.

Jump to this post

Hmm...usually the sputum cultures are repeated every 3 months while on the meds to determine when you "convert" to negative for MAC. That starts the 12 month "countdown " to cease antibiotics. You continue to test every 3 months to be sure you stay clear. Also one protocol says if you don't convert by 12 months, it is time to consider adding or changing meds, or changing frequency.
It sounds like this doctor is not up-to-date on managing MAC treatment.
Do you have an option to change pulmonologists?
Also, what airway clearance routine did she teach you?

Sue

REPLY

My pulmonary Dr hasn't even mentioned airway clearance, I had to beg to get 3% saline solution for my nebulizer. Best practice medicine I feel is a referal to a respiratory therapist to keep well, I have lentiflavin, no nodules or holes and want to stay that way!

REPLY
@sueinmn

Hmm...usually the sputum cultures are repeated every 3 months while on the meds to determine when you "convert" to negative for MAC. That starts the 12 month "countdown " to cease antibiotics. You continue to test every 3 months to be sure you stay clear. Also one protocol says if you don't convert by 12 months, it is time to consider adding or changing meds, or changing frequency.
It sounds like this doctor is not up-to-date on managing MAC treatment.
Do you have an option to change pulmonologists?
Also, what airway clearance routine did she teach you?

Sue

Jump to this post

I start worrying. I have been on meds since April; my pulmonologist finally ordered last week sputum culture but what I submitted to the lab was not good for the C&S and we are also waiting for the lab to tell if the sputum cultures for MAC worked. I am going tomorrow to NW hospital in Lake Forest, Illinois for sputum induction but I really do not produce anything that could be coughed up. I am registered at NJ, had an interview with the nurse and did not hear from them since July. I am also scheduled to see an Id doctor at Loyola Medical center in Mywood in February. I asked on this forum if anybody could recommend a MAC/Bronchiectasis specialist in the Chicago area or neighboring states ; no one responded yet. I am lost.

REPLY
@squire123

My pulmonary Dr hasn't even mentioned airway clearance, I had to beg to get 3% saline solution for my nebulizer. Best practice medicine I feel is a referal to a respiratory therapist to keep well, I have lentiflavin, no nodules or holes and want to stay that way!

Jump to this post

Airway clearance is on of the pillars of managing bronchiectasis,
so a pulmonologist who does not mention it is not familiar with the current standards of care. This is not uncommon. In spite of the impression you may get reading here, bronchiectasis is a rare condition. If want the best care to stay healthy fot the long term perhaps it is time to seek a doctor who regularly sees bronchiectasis and MAC patients.
Do you have options for seeing a different doctor?
Sue

REPLY
@sueinmn

@Cathin
Let me see if I understand your questions.
You want to know if there is any problem having the Covid vaccine while using Symbacort? Not as far as anything I have read, and I got my last booster while using it - no problem. Now that the updated vaccine has been released, I will be getting in line at my clinic as soon as they have.

As for using Symbacort and the increased risk of developing MAC, my pulmonologist and I discussed it at length. I stopped antibiotic treatment while still testing positive (MAC knocked down but not out) so I was concerned about it flaring. My asthma was poorly controlled, I was chronically short of breath & had pain on exertion, so it was hard to get the exercise I needed. On a risk/benefit scale, the ability to breathe better, feel better & exercise was a HIGH benefit. The uncertain possibility of reinfection was a LOWER risk. So far, at 20 months, my breathing is better, I use FAR less rescue inhalers and Levalbuterol nebs, have only had 2 mild exacerbations, so I view it as a win. Next lung images due in December, so we'll see if everything has remained stable.

Every individual with bronchiectasis and MAC is different, so the decision must be made by you and your doc based on your situation.

Sue
Sue

Jump to this post

Sue, Thank you! My Pulmonoslogists said the dose is low, it's not bothering MAC, or will it interfere with vaccines. Every email is answered by an RN...Seeing the dr. in October. I can't wait the 3 months it will take to get off the Symbacort, to get my vaccines. She said it will take that long, because I've been on it 10 months. This is so worrisome. I thank you for your answer!

REPLY
@sueinmn

Airway clearance is on of the pillars of managing bronchiectasis,
so a pulmonologist who does not mention it is not familiar with the current standards of care. This is not uncommon. In spite of the impression you may get reading here, bronchiectasis is a rare condition. If want the best care to stay healthy fot the long term perhaps it is time to seek a doctor who regularly sees bronchiectasis and MAC patients.
Do you have options for seeing a different doctor?
Sue

Jump to this post

This is #2, 1st one said my mycrobacterium lentiflavin may go away! A bit discouraged, ordered a aerobika, hopefully comes with instructions in English! Interview with Jewish National on Monday.

REPLY

Question: 4 months into MAC Arikayce treatment. What is the current advice regarding the covid shot. Also the flu shot and the RSV shot? Together or separate. All previous versions of covid and flu shots current.
Thanks. Rob

REPLY
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