Recently I was recommended by my asthma doctor, to start getting the Nucala injection. I had severe asthma as a child, grew out of it at 18 and then it returned a few years ago at the age of 62. I have been on allergy shots for many years and continue to get them. My asthma symptoms are under control but, only while I’m on 10 mg. of prednisone daily along with Breo inhaler.
I’m nervous about getting the Nucala injection because of the possible side affect of shingles. I had chicken pox as a kid and I have not had the shingles vaccine.
Since Nucala is new, I want to know about its success rate thus far and if shingles has been reported after starting Nucala or after getting the shingles accident?
Hi needsairtobreath – we hear you! Interesting that you had severe asthma as a child and ‘grew out of it’ at age eighteen. Several members in our community have had similar experiences about ‘growing out’ of their asthma, so you’re not alone.
We understand your concern about starting on something new, in this case the Nucala injections. If you haven’t as yet, I thought you might find it helpful to look over this published material on that particular medication: https://asthma.net/treatment/nucala/ I’m sure this will provide some additional insight for you.
Please check back with us and let us know how you’re doing.
All the best,
Leon (site moderator)
Thank you for your quick reply on Nucala. I have researched this drug throughly and my biggest fear is shingles. I had the blood test to see if I was a candidate for the shot and my numbers were very high. My white blood count is an excellent match for this shot. Even with that result, I am still worried about shingles.
My stresss levels are minimal right now and have been for several months after making my daughter move out. I haven’t had an attack nor have I gotten sick with bronchitis since she moved out. So I have not moved forward with my doctors recommendation that I begin the Necala injections. I am taking the wait and see approach until I have enough evidence to make a decision. If I remain feeling good like I’ve been in the last few months, and I can lower my daily dose of prednisone from 10 mg to 5 mg, I will be very satisfied. I continue to give myself allergy injections weekly and I am mindful of the daily triggers like mold, tree pollen, damp air, etc. The only thing I don’t have a handle on is my weight, which has gone up due to the prednisone.
What I hoped to get out of this forum was… stories from patients who have had success with Nucala; in case my system goes haywire like it did when my doctor suggested Nucala.
Hi needsairtobreath -I have experience with Nucala. I was able to fully come off my prednisone ( from 12.5mg to zero) over the course of 18 months. It is important to note that my experience was in a clinical trial before Nucala came to market. However, the same dosage I was on , is the one that was approved. I did not experience shingles. The most annoying side effect was a mild headache. It is important to note that experiences are individual. You may want to revisit the discussion with your doctor, expressing your concerns.
Hello Dia SWS,
That is good that you have been able to get off of prednisone. Taking 18 months to get off of it, is a long time!
Are you still on Nucala and if so, how long have you been getting the injections? During the clinical trial, was shingles brought up in conversations? It would be awful to trade one major problem for another; is my biggest concern.
I am doing well for right now and will be tapering my prednisone to 5 mg daily for the next few months.
Thank you for responding and I hope to continue open dialogue about this new drug.
I should note b/c I was in a study. tapering is very controlled I was probably off prednisone in just under a year and remained off for about 9 months after that time frame. it is very controlled and since ether visits were every month. Things happen in large time spans.
I am not on Nucala anymore. I started another biologic study afterward the study, as Nucala had not yet been approved. Shingles was never brought up by my physician ( to my recollection), nor do I even recall any gossip about it. In general, doctors are very concerned about trading one issue , for another. Nuala is for a specific type of patient, if you meet that criteria, generally the benefits out weigh the risks but it is up to you.
Thank you Dia SWS,
I have met all of the criteria and I’ve been approved but since I’m doing great right now and have been for several months, I am going to continue to hold off for as long as I can.
I appreciate all the information you have given me. If anything changes and I go on it, I’ll let you know how things are going.
How does one get to do a controlled study?
Hi (again) needsairtobreath. Thanks for your inquiry regarding controlled studies (clinical trials). I thought you might find it helpful to look over any of this material on that very subject: https://asthma.net/?s=clinical+trials&submit=Go
Leon (site moderator)
Ive just come along this site and was interested in, if you ever started the Nucala injections?
Its been well over a year since you posted that comment about it and shingles..
I had to jump through so many hoops to get it as well,,, it took me a long time after the script was written to be able to start as i had out of control blood pressure ,, I’ve just had my 4th injection..
Apart from getting some of the side effects,,, and i researched very well and was prepared, i ended up getting shingles…
The minuite i got the 3rd injection i could barely move,,, i felt like if been hit by a truck,,, finally the rash proved it is shingles,,, I’m still unwell and have just had the 4 th injection whilst still sick…
Id love to hear what’s happened to you and other people since being on this drug as i have other symptoms that i would like to compare mine with.
I am so glad that you reached out to me about Nucala. I was supposed to go for my 4th injection today and after reading your post to me, I decided to cancel my appointment because I see my lung doctor this coming Wed Sept 12th.
My first two injections were well tolerated. My third injection, like your, did not make me feel well at all. I haven’t felt well for the last four weeks. When I read your post, it confirmed what I was feeling.
I am being treated for adult onset asthma that is also stress induced.
I have been on 10 mg of prednisone for sixteen months. I had to do a quick taper in order to have the blood test for Nucala. I had to be off of Nucala for a month before the blood test. By week three with no prednisone, I was having severe withdrawals but I continued to stay off of it for a total of ten weeks before I couldn’t stand the muscle aches and pain.
I was approved for Nucala and got set up for my first shot. I also had to go back on prednisone at a little higher dose of 12.5 mg and start a very slow taper. I am now on 7.5 mg which is a critical point because my adrenal glands should be waking up and beginning to take over what the prednisone had been doing in its place.
When I see my lung doctor on Wed I will find out if I will taper down to 7 mg for six weeks. Like I said, it’s a very slow taper.
I’m so relieved that I didn’t get the Nucala shot today. I wasn’t looking forward to possibly another not so good feeling.
I am so sorry that you got shingles. That was my biggest fear and it’s not to say that I still won’t get it, but I haven’t gotten it yet.
Between the prednisone taper and the Nucala shots, I have suffered with extreme fatigue. That is my biggest complaint as of now.
What other side affects have you had? Do you think you will continue getting the Nucala shots?
Thinking back on the first shot, I was on 12.5 mg prednisone along with the Nucala shot; no wonder I felt pretty darn good!
My second shot I was at 10 mg of prednisone and I still felt like I had made the right decision to take Nucala.
My third shot I was on 7.5 mg of prednisone and I felt lousy right away and it’s lasted all this time.
So I’m guessing that as I taper even lower the Nucala isn’t looking like the miracle drug it’s been raved about.
I would love to hear more about your symptoms.
I am older than you; 66. I’m on a lot of other medications too. Looking forward to hearing from you. Deborah
Thank you for the reply,, wow you are struggling with it all, but i know how you feel as ive been there…
Im 60 years old, i think all the steroids ive had to take keep me looking younger then i am.
Ok so this is just my take on it so far,,, we are all different so i guess we will all feel and tolerate these drugs differently..
I’ve been a cronic asthmatic since i was 23,,, i suffered a bit as a teen but nothing bad,, then i moved out west and that started my life of true frightening asthma, for years i spent 3 weeks of every month in ICU… i cant tell you how many times I’ve nearly died, the worst being in one of my daughters arm’s with only minuites to go..
I eventually left the land and now live on the coast, here i am better but still had some bad years and eventually got myself under a lung specialist and fingers staying crossed he has kept me out of hospital for 8 years this year.
As you know we do have to hit a very high criteria to get Nucala, it is very expensive, my dr did tell me how much, i nearly fell over. At the time he applied for it my breathing capacity was at 68% and had been at around that for the last few years
Im on 4 puffers,, no cortisone atm or at the time of starting my first injection.
1st injection…… backache for a couple of days, headache and a bit tired
But breathing better,, peak flows didnt change much but i noticed i wasn’t running out of breath when talking.
2nd injection…… backache for a good 5 days, headache and fatigued.. i slept for 3 days and 3 nights. Breathing again was good
3rd injection…… backache for 3 weeks, bedridden, headache, aching joints. Nasty rash, itching all over,,, SHINGLES……. But breathing better.
4th injection…… i had this on Tuesday 4th september….. I’m feeling ok but very fatigued,, so far I’ve slept for 4 days and 4 nights. My back is hurting the entire spine but not as bad as the 3rd injection month. I have a headache but not as bad and again im breathing better.
Ok through each month about a week after each injection ive noticed i can talk for ages without running out of breath, but this depletes about a week before the next one is due, so for just over 2 weeks i can breathe so much better,,, i think this last injection i was better with my breathing within 4 days, which is today.
Dr told me the shingles will only happen once, it should not happen again.
Maybe I’m still very tired from getting it, I’m not sure at this stage, but i will let you know.
I see my specialist the day i get my 5th injection,, into the chamber of horrors for my breathing tests to see if in fact i am any better.
When i went to get the 4th injection i wasn’t going to get it because i thought i had developed cellulitus(bacterial skin infection), I’ve had that before and it went septic.
Because it lowers the antibodies i don’t want to be open to infections.. But as soon as the dr saw the rash he said it was shingles, looked up Nucala and there it was…. no doubt i got it in spades and thinking back my skin had been very itchy.
Once he said i should not get it again i decided to keep going..
Deborah my breathing is seriously so much better, this month will be my decider but at this stage i think I’ll keep going..
Fatigue seems to be a major problem for me as well, i will let you know how i go though these next few weeks.
You could talk to your dr as in doing research i have seen you can get a vaccine against shingles,, maybe it’s an option!!
That was quite a story. I’ve had one shot. My breathing is good; however, I think I’m getting Shingles. I have several blister like bumps on my chest. UGH. This shot is supposed to be my salvation from Asthma. I’m so hoping this will work. Did the doctor not want to take you off of the medicine when you got Shingles or was it a “it will pass” kinda thing?
It has been three months since I’ve heard back from you and I was wondering how you have been? Are you still getting the Nucala injections? Did the shingles clear up?
Has your breathing improved to your satisfaction?
I hope you are doing well. I would love to hear from you when you have a moment.
I am on my 6th injection and tapering slowly off of prednisone; currently at 6mg daily. It’s been a difficult struggle and from what I’ve read, it will get worse as I go down to 5mg. My biggest complaint is fatigue caused by the prednisone taper.
I believe that Nucala is helping my breathing but seems to wear off after the third week. Have you experienced that? When I saw my lung doctor, he told me that several patients have said the same thing. He wants me to go for a blood test the day before my next injection to find out if there is an increase in my eocyniphils. If so, I’ll either up the dose to 200 or get the injection every three weeks. It all has to do with insurance protocol.
Would love to hear from you.
I sent you a long reply Saturday night and just as I clicked on post, we had a power glitch that lasted a few seconds. Then a box popped up on the screen that said (error accurd), now I’m wondering if my reply disappeared. Can you let me know if you got it? Thank you.
I know now that my long response got lost due to a power glitch we had just as I was sending it.
I saw my lung doctor on Wednesday; it was a positive visit. I told him that I was worried about getting the 4th shot because of the way I felt from the 3rd shot.
We agreed for me to taper down the prednisone to 7 mg for six weeks and that I should continue with my 4th shot,which I got yesterday. So far I am doing real good. I also told him that my inhaler just wasn’t helping through the day. I was on Breo. He switched me to Simbacort. That seemed to make a difference yesterday. I’m feeling more confident at the moment and we both know that can change.
How are you doing being two weeks on your 4th shot? Any other side affects besides fatigue and shingles?
And how are you feeling with shingles? Is it a bad case or is it under control?
I’ve had several very itchy areas from the beginning when I got my first shot but no signs of shingles. They are on and around my ankles and my lower back near my hip.
I’m hoping that Friday will be as good a day as I had Thursday. I have a busy day grooming three dogs. If I can do that I will feel like there is hope for me.
My prednisone taper is going to take months but I will do what it takes to get off of this drug.
I hope to hear from you and I hope your process is good!
I have been getting Nucalla shots for about 15 months. The shot has been wonderful for me. I did not get shingles.
However I have been getting dizzy for quite some time. Several months. To the point that the room is spinning. It seems to be getting worse each month,
Has anyone else had his happen?
I have been getting Nucala injections for 6 months and I have noticed some dizziness from time to time but nothing like what you are experiencing. My episodes happen as I’m walking up a flight of stairs, causing me to stop and hang onto the railing for a few seconds. I am going to become more conscious of it so that I will be able keep a journal. I am also doing a very long taper off of prednisone; with that said, the taper could have something to do with the dizziness that I’ve experienced.
I hope that you will follow up with your doctor. An ENT (Ears, Nose, Throat) Doctor can check for an inner ear problem if you feel that the Nucala has been beneficial for your breathing.
Wishing you the best. Hope you find an answer soon.
Hi Annie1 and thanks for your post. While I’m hopeful others in the community will see your question and respond, I am concerned about you ‘getting dizzy for quite some time. Several months’. We usually suggest that when symptoms (you feeling dizzy) persist or worsen even, they should contact their physician. Have you had a chance to advise your doctor about this symptom? Do you think you should? Please let us hear from you. Leon (site moderator)
Hi again, Annie1, and thanks for responding. Glad to hear you are going to see your ENT physician today. Please do check back and let us know how you’re doing. Wishing you the best, Leon (site moderator)