Wanting info on Biologics
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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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!
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!
I have emphysema caused an underlying genetic condition Alpha-1 Antitrypsin Deficiency. I have been on Symbacort for years with no issues and have never had thrush. I have been doing Fasenra shots (prescribed by local allergist) successfully for four years now and it brought my eosinophil count to zero. I've had no negative reaction and like that I only have to do shots every eight weeks. Started seeing a pulmonologist at Mayo Clinic this past year who is high on Airsupra so I do that successfully during times of viral infections. Her top biologic suggestions are Dupixent and Teszpire. I tried Dupixent and it gave me extreme head/neck pain for two days so I stopped and went back to Fasenra. My child with same lung issues has been on Xolair shots successfully four years and now gives them to herself monthly at college with success. I HIGHLY recommend biologics. They do make a difference.
I am taking Symbicort twice a day and I use it as my rescue inhaler. It is very effective for me. Currently on 12.5 mg of prednisone (will taper to 10 mg Monday). I also take 300 mg of Nucala (so three injections at once, every 28 days). I have chronic eosinophilic pneumonia and sinusitis. Probably GERD due to the prednisone - appt with gastro this week.
I will check out the link. I haven’t even started the Symbicort yet so I’m sure I’ll be in for a struggle once I do that. My problem is I have such bad reactions to meds just super sensitive to so many. I will definitely use a spacer when I start the Symbicort. I use one with my albuterol and I rinse my mouth each time I use it. Good idea to change out the tooth brush every month! I did change mine out frequently when I had thrush before but not since so I’ll definitely do that now on a regular basis. The first time they put me on Diflucan for 10 days at 200 mg the first day then 100 mg daily for 9 days but by day 7 my side effects were intolerable and I didn’t take it the last 3 days.
I see the pulmonologist on the 28th and I’ll have pulmonary function tests the same day. I’ll be discussing Biologics with him that day as I have to make up my mind if I’m going to try one or just try the Symbicort.
Do you mind refreshing my memory on what meds you’re using now and how you’re doing on them? I’ve read so many things I can’t remember what’s what. If I remember correctly didn’t you have trouble with sinus congestion also? That’s another battle I’m having in addition to really bad GERD and all of the lung stuff. Unfortunately we don’t have the best healthcare in my area and I’m too far from Mayo to go there.
Thanks for responding so quickly. Ok going to check out your conversation about thrush now! Thanks!!
@staylorrn2000 Yes I got thrush the first month of Symbicort. I used Diflucan and Nystatin to varying degrees of help (I used both while on prednisone and Symbicort with no issues). See my frustrated rantings about my thrush here: https://connect.mayoclinic.org/discussion/thrush-forever/
It finally did go away after using a spacer with my Symbicort. I also brush my teeth or use mouthwash after every use of the symbicort and I trade out my toothbrush once a month. Haven't had any since. Not sure if that's meds or just being better about how I use my inhaler and clean my mouth.
Congrats don't he .15 mg prednisone! Amazing - you're so close!
Lisa
Good afternoon. Just wondering if you’ve had trouble with thrush and if so what did you use to treat it? I can’t tolerate nystatin. I see Diflucan is contraindicated with so many medications, including prednisone and albuterol, both of which I’m still using. I am down to 1 l.25 mg of prednisone daily. This is my first day of that coming down from 2.5 mg daily. I’ve been having to use my albuterol rescue inhaler lately. I am supposed to start generic Symbicort but don’t want to start it until I get the thrush cleared up. I also see Diflucan is contraindicated with Symbicort. Any feed back you can give me will be greatly appreciated. Thanks!
Good luck. Have a fun night. Any pulmonogist can prescribe fasenra and airsupra
Thank you for the info.unfortunately I am a long distance from Mayo.
I should add, all of my labs that were very high and off the chart are now very low and well under control thanks to the Fasenra. Eosinophils and other phils are at the low end of the scale