Wanting info on Biologics: What are your experiences?

Posted by staylorrn2000 @staylorrn2000, 4 days ago

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!

Interested in more discussions like this? Go to the Lung Health Support Group.

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.

REPLY

I am on Dupixent for COPD. I've had no side affects however, everyone is different. I have noticed some improvement but it can take up to 16 weeks or so for it to reach it's maximum effectiveness. I'm only 6 injections in so being patient. It has also helped my eosinophilic esophagitis tremendously.

REPLY
@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.

Jump to this post

The one prescribed for me is Tezspire , that after reading about all of the side effects and because I have so many adverse reactions to so many drugs, I was fearful to even try. Good to know you have had success with Fasenra. I didn’t mention in my post but I have esophagitis, chronic sinusitis, post nasal drip, and GERD besides the asthma.

REPLY
@donnab213

I am on Dupixent for COPD. I've had no side affects however, everyone is different. I have noticed some improvement but it can take up to 16 weeks or so for it to reach it's maximum effectiveness. I'm only 6 injections in so being patient. It has also helped my eosinophilic esophagitis tremendously.

Jump to this post

Thank you for your input!

REPLY
@staylorrn2000

The one prescribed for me is Tezspire , that after reading about all of the side effects and because I have so many adverse reactions to so many drugs, I was fearful to even try. Good to know you have had success with Fasenra. I didn’t mention in my post but I have esophagitis, chronic sinusitis, post nasal drip, and GERD besides the asthma.

Jump to this post

Yes to all of the above. Good luck. Fasenra and air supra inhaler helped me.

REPLY

I have Chronic Eosinophilic Pneumonia and sinusitis (probably severe asthma but hard to tease that out of the rest of it right now). I cannot get under 10 mg of prednisone without relapsing so we tried Dupixent first since that targets it all. However, I felt awful after every injection and better and better the farther I got from the injection date. After the third injection, my pulmonoligst ordered a blood test and my blood eosinophils were 18% (lung capacity was also diminished), so we pivoted to Nucala.

After the first injections of Nucala (I do three injections, so 300 mg once a month), I had a lot of fatigue for about three days. I am fatigued regularly but this was seriously ramped up - but at least I could sleep versus being on 60 mg of prednisone (which is a living hell). I've had no other side effects and the fatigue faded after three days. I am three weeks out from those first injections and feel better than I have in months. It takes 6 months to see the effectiveness but I am already down to 15 mg of prednisone with no side effects or symptoms. I have lots of hope for this one!

Sending you the best while you decide if this is best for you and happy to answer any questions about my experiences.

REPLY
@lluth412

I have Chronic Eosinophilic Pneumonia and sinusitis (probably severe asthma but hard to tease that out of the rest of it right now). I cannot get under 10 mg of prednisone without relapsing so we tried Dupixent first since that targets it all. However, I felt awful after every injection and better and better the farther I got from the injection date. After the third injection, my pulmonoligst ordered a blood test and my blood eosinophils were 18% (lung capacity was also diminished), so we pivoted to Nucala.

After the first injections of Nucala (I do three injections, so 300 mg once a month), I had a lot of fatigue for about three days. I am fatigued regularly but this was seriously ramped up - but at least I could sleep versus being on 60 mg of prednisone (which is a living hell). I've had no other side effects and the fatigue faded after three days. I am three weeks out from those first injections and feel better than I have in months. It takes 6 months to see the effectiveness but I am already down to 15 mg of prednisone with no side effects or symptoms. I have lots of hope for this one!

Sending you the best while you decide if this is best for you and happy to answer any questions about my experiences.

Jump to this post

Oh my goodness, you have certainly been through it. So happy to hear you’re seeing progress with the Nucala and have been able to wean down on that horrible prednisone. Prednisone has made my life a living hell. I’m now down to 4 mg daily and can’t get off of this poison quickly enough to suit me. I have no idea if I’m having prednisone withdrawal or if my symptoms are from true adrenal suppression . It would be much less worrisome to plow through this if I knew for sure I wasn’t going to go into an adrenal crisis. At this point I’m afraid of almost all medications. I have to find something for my lungs though that works and causes the least side effects that’s why I’m almost to the point of agreeing to try a biologic.

REPLY

Maybe going through war with this disease is why I agreed so quickly to the biologic! I trust my pulmonary team (Mayo and Atrium in Charlotte) and they both said the biologic is far safer than prednisone. So sorry your lungs are yucky. I never gave breathing a second thought until this year. Turns out a good deep breath is something to be grateful for.

Sending you support as you make your decision (and sending lots of support and empathy as you get off prednisone).

REPLY
@budisnothome

Yes to all of the above. Good luck. Fasenra and air supra inhaler helped me.

Jump to this post

May I ask what air Supra inhaler is?

REPLY
Please sign in or register to post a reply.