1. < Lung Health

Wanting info on Biologics

Posted by staylorrn2000 @staylorrn2000, Jan 7 8:05pm

Hello. I don’t tolerate maintenance inhalers which I’ve tried many. Pulmonologist wants to try me on a biologic but I’m fearful of the side effects. Would anyone want to share their experience with being on a biologic? Thanks!

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staylorrn2000 | @staylorrn2000 | Feb 4 11:44am
In reply to @lisalucier "I have been on mepolizumab (Nucala) for over a year. At first I did not think..." + (show)
@lisalucier

I have been on mepolizumab (Nucala) for over a year. At first I did not think it was doing anything, but then I realized when talking to my allergist that I'd not needed courses of prednisone, which I often end up needing when I've been traveling. I also realized I'm not getting in bed every night and then opening my nightstand to grab my albuterol.

Just this past week or so, I've had some coughing again, my main asthma symptom which had mostly gone away. So, I'm not sure if anything is waning with the mepolizumab, or perhaps I just have a cold.

@staylorrn2000 - have you gotten to try the dupilumab (Dupixent) yet?

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Good morning. I have not tried the Dupixent yet. My co pay is $1,300 per month, which I can’t afford so my pulmonologist office is working on getting me a co pay program. When I saw him again yesterday he said given that I can’t tolerate all of the many asthma med options, (I react badly to everything I’ve tried) having to stay on 2.5 mg of prednisone daily wouldn’t be the worst thing to have to do. I seem to tolerate 2.5 mg daily without side effects (at least non that I can see, but who knows what damage staying in it long term might do internally). From what I’m reading the potential for serious side effects from all these Biologics are many and they haven’t been around that long in comparison to other asthma treatments.

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 4 11:00am

I have been on mepolizumab (Nucala) for over a year. At first I did not think it was doing anything, but then I realized when talking to my allergist that I'd not needed courses of prednisone, which I often end up needing when I've been traveling. I also realized I'm not getting in bed every night and then opening my nightstand to grab my albuterol.

Just this past week or so, I've had some coughing again, my main asthma symptom which had mostly gone away. So, I'm not sure if anything is waning with the mepolizumab, or perhaps I just have a cold.

@staylorrn2000 - have you gotten to try the dupilumab (Dupixent) yet?

REPLY
1 reply
staylorrn2000 | @staylorrn2000 | Jan 28 7:26pm
In reply to @ann0 "Hate to hear all the problems you all have been having. I’ve tried several corticosteroids and..." + (show)
@ann0

Hate to hear all the problems you all have been having. I’ve tried several corticosteroids and long term control meds (Alvesco, Flovent, Pulmicort, Singulair, Spiriva, Advair, Breo…) that couldn’t control my asthma, and caused side effects. The worst being Vocal Cord Dysfunction where I couldn’t talk at all.
I was finally given Xolair which made me not relay on my albuterol almost every day, but still had to take the long term meds. Then a few years ago I got on Dupixent. It used to make me tired the day of the shot, but no other side effects. I don’t need the long term inhalers anymore, and I no longer need to use the albuterol, except in extreme weather or exercise. My lung function is good now. I just have to get the Dupixent shot every other week.
I’m not saying biologics will be a cure-all, but I personally have had almost no side effects from them and they have made a huge difference in my life. IMHO I would definitely talk to your doctor about them but also be vocal about your worries. They should be sensitive to your concerns and careful to watch for side effects or possible reactions.
It’s completely understandable to be careful about something like this. Do what you’re comfortable with. Good luck with your appointment!

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My pulmonologist ordered Dupixent for me today. He was going to try me on Teszpire but changed his mind.

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staylorrn2000 | @staylorrn2000 | Jan 28 7:24pm
In reply to @hicopd "I have had good results with Dupixent. It’s taken every 2 weeks and so far, it..." + (show)
@hicopd

I have had good results with Dupixent. It’s taken every 2 weeks and so far, it has increased my resting saturation rates from 92-93 to 94-95. It has also helped reduce my heart rate while ambulating so that it stays in a more normal 125 bpm instead of 150+! I’ve only been taking it since late November, but so far, I am pretty satisfied. It does make my knees a bit uncomfortable (a bit tight), which is a potential side effect.

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My pulmonologist just ordered Dupixent for me today. Now the wait begins for insurance approval. I’ll admit I’m afraid to try it because I have such bad side effects to almost everything I try but I’m to the desperation stage. I’m glad it’s working for you.

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hicopd | @hicopd | Jan 24 8:11pm

I have had good results with Dupixent. It’s taken every 2 weeks and so far, it has increased my resting saturation rates from 92-93 to 94-95. It has also helped reduce my heart rate while ambulating so that it stays in a more normal 125 bpm instead of 150+! I’ve only been taking it since late November, but so far, I am pretty satisfied. It does make my knees a bit uncomfortable (a bit tight), which is a potential side effect.

REPLY
1 reply
staylorrn2000 | @staylorrn2000 | Jan 24 7:34pm
In reply to @jwool89 "Teszpire is an excellent choice. My pulmonologist said she often prescribes it because it does a..." + (show)
@jwool89

Teszpire is an excellent choice. My pulmonologist said she often prescribes it because it does a great job and insurance companies almost always will cover it vs the pushback she gets with Dupixent.

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Thank you!

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jwool89 | @jwool89 | Jan 24 8:39am
In reply to @staylorrn2000 "My pulmonologist has recommended Teszpire, so I will probably try it. He has never tested me..." + (show)
@staylorrn2000

My pulmonologist has recommended Teszpire, so I will probably try it. He has never tested me to see what type of asthma I actually have but I read that Teszpire works for eosinophilic asthma and non eosinophilic asthma so I guess I’d be covered either way.
Thank you so much for your input!

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Teszpire is an excellent choice. My pulmonologist said she often prescribes it because it does a great job and insurance companies almost always will cover it vs the pushback she gets with Dupixent.

REPLY
1 reply
budisnothome | @budisnothome | Jan 24 12:59am

Ground glass nodules. Eosinifilic esophagitus. Vocal cord disfunction. I would pass the pf test. My problem was i could not suck in air. Ground glass things are getting smaller. Always starving for air. Much better now.

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lanceherndon | @lanceherndon | Jan 23 11:44pm
In reply to @budisnothome "Which one? I had way too many problems for years that the team could not solve...." + (show)
@budisnothome

Which one? I had way too many problems for years that the team could not solve. Tried Fasenra. Wonder drug. Every 8 week self injection. Cured so many problems. Chronic cough. Eosinaphilic edophagitis. Sinus drip. Vocal cord disfunction. Breathing problems. Many more. On Medicare and thru the med company program it is free. Also am using their air supra inhaler. Both are free and really work fantastic.

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If I may ask what is your lung issue?

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staylorrn2000 | @staylorrn2000 | Jan 23 7:59am
In reply to @ann0 "Hate to hear all the problems you all have been having. I’ve tried several corticosteroids and..." + (show)
@ann0

Hate to hear all the problems you all have been having. I’ve tried several corticosteroids and long term control meds (Alvesco, Flovent, Pulmicort, Singulair, Spiriva, Advair, Breo…) that couldn’t control my asthma, and caused side effects. The worst being Vocal Cord Dysfunction where I couldn’t talk at all.
I was finally given Xolair which made me not relay on my albuterol almost every day, but still had to take the long term meds. Then a few years ago I got on Dupixent. It used to make me tired the day of the shot, but no other side effects. I don’t need the long term inhalers anymore, and I no longer need to use the albuterol, except in extreme weather or exercise. My lung function is good now. I just have to get the Dupixent shot every other week.
I’m not saying biologics will be a cure-all, but I personally have had almost no side effects from them and they have made a huge difference in my life. IMHO I would definitely talk to your doctor about them but also be vocal about your worries. They should be sensitive to your concerns and careful to watch for side effects or possible reactions.
It’s completely understandable to be careful about something like this. Do what you’re comfortable with. Good luck with your appointment!

Jump to this post

Thank you so much for your input. I have heard mostly positive feedback on Biologics. Happy to hear you’ve found success on with them! I’ll be seeing my pulmonologist on the 28th and making a decision then on the next step in my treatment. Thanks again.

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