I've been on the usual meds to control my asthma and now my consultant (at Glenfield, Leicester) is putting me forward for monthly injections to replace all the meds. Anyone have experience of this?
Injections to control asthma - Asthma Community ...
Injections to control asthma
Which injection are you being put forward for?
I had xolair (for my allergic asthma) at the Glenfield in Leicester. I had it every 2 weeks for 7 months but then had to stop it unfortunately as it hadn’t made much of a difference to my admissions or steroid dose.
But I never had any issues with the injections and I met quite a few people at the clinics who have been on it years and it’s made a massive difference to!
Thanks. I can't remember what the injection was called. I have to go back in Sept as there's a waiting list. But I understand there's two different ones I'm being considered for and they're both once a month injections.
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Ahh ok the xolair can be 2 weekly or monthly depending on the dose you need (worked out by blood tests and weight) and the other type, mepolizumab (think that’s the right spelling) is monthly.
I know people who have had great results on both - hope you get one and that it helps!
I was put on Omalizumab (Xolair) 2013-2017 for my asthma, it took a couple of years before I could get on it, it was 4x injections every 4 weeks. it did help a lot in the beginning for the first couple of years, then after a bout of pneumonia it seemed to become less effective and I was swapped over to Mepolizumab (Nucala) in May 2017 1x injection every 4 weeks. Since being on Mepo I have only had 1 bad day with asthma symptoms and I have not had any hospital admissions or lost a day off of work in the past 2 years.
I have had a couple of chest infections, but I have managed to get through them with just antibiotics, I have not had any need for prednisolone. My FeNo tests have come down from 84 to between 12 & 25. I am still on Tiotropium, Fostair 200/6, and salbutamol and Montelukast, but I have been able to stop daily nebulisers and come off uniphylin.
Thanks for the info. I thought it would mean I'd stop taking all my usual meds not adding to them. I'll wait and see. Thank again.
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I’ve never heard of the biological injections being used in place of other medications.
The only thing they normally get used for like that is to try and reduce the dose of oral prednisolone in people who are steroid dependent.
Obviously after a long time of being stable people may be able to start stepping down some other medications, but that wouldn’t be an immediate thing and if you’re at the point where they’re considering a biologic it would need to be done very carefully to stop symptoms resurfacing.
Thanks again. A bit disappointing to hear but I suppose it is what it is. After being healthy all my life I haven't yet come to terms with taking all these meds every day.
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Hi I’ve tried a few monthly injections but have yet to be able to get off medications due to them (had to stop theophylline due to side effects whilst on them).
Started on xolair injections (for allergic asthma) Jan last year. This didn’t have a huge impact other than slightly reducing hosp trips to once a month (usually the week before it was due). This one gave me mild headaches initially but around the 6th injection I got swollen lips and hives 2 weeks afterwards, when the exact pattern repeated after the 7th dose it was stopped.
In October I started mepolizumab injections (for eosinophilic asthma). This in essence cured my asthma for the 3 months I was on it (finally got back to my maintenance pred dose of 10mg and we were starting to discuss weaning further) but I was getting 3 migraines a month lasting 5-7 days each time, plus severe neck, shoulder, back and leg pain along side nausea in the mornings and other more mild issues. Due to the amount and severity of side effects this got stopped too. However when on it I only had 1 mild asthma attack triggered by allergies (resolved just by repeat B2B nebs in a&e and was admitted for a couple night due to being in a new hospital).
I had a slow and steady decline in control since stopping in Dec, with attacks getting more severe and more frequent (tho still not back to level I was at in 2017).
10 days ago I started on Benralizumab and other than immediately coming down with a chest infection (or the side effects feeling very like it and lasting 5-7 days with ABs) my asthma feels like it’s improved and I’m definitely taking less ventolin then before the injection (was in hosp every 17/18 days prior to starting with the last admission lasting 9 nights 😒).
For me my aim is to get off prednisolone, which should also mean cutting out the means I take due to the pred 😅. I’ve never been told that any of them will replace all of my meds, just help reduce back to a more normal amount 😅. I would still have to take my inhalers and antihistamine tablet’s/spray.
This all being said I know individuals on each type (plus resilizumab) who have had excellent results with them, managing to stay on them long term, with little to no side effects and getting of pred/severely reducing hospital admission.
I hope this helps and I wish you luck with which ever you end up on
Thanks. Sounds like your asthma is more severe than mine as I don't need to go to hosp as my meds control the symptoms. It sounds like you've been through hell and back. I'm sure the consultant said it would replace the meds. I'll just have to see and keep fingers crossed. Thanks again.
Hi there
I have eosinophilic asthma and have been on mepolizumab since November. I was on regular steroids and had admissions to hospital prior to that. It has been amazing. I’m still on meds and awaiting review by consultant to review these but overall it’s been brilliant. I have it every four weeks and hopefully it will keep me well for a long time to come. I hope that they are able to help you.
Thanks Margerita.
That's encouraging, though I'd be tempted to wean myself off the meds before the review. I know that's bad!
No Sorry 😔
This is so useful! My asthma nurse rang me last month to offer me weekly injections (and then as usual cancelled our appointment) but I won't find out more unless and until we actually talk at the end of this month. Please keep us posted? It would be great to learn more about it at the beginning instead of only in little dribs and drabs.
I agree. It seems there are lots of variations which makes sense as everyone's different. I'll have to wait and see when I see the consultant next (in Autumn).
What is the drug called that they intend to give you? Is it Xolair or a new drug?
I think the consultant was talking about new drug. I won't know for sure till September when I go back as there's a waiting list. I'm not sure how many monthly injections are available on the NHS. I wouldn't think there's all that many.
Are you considered a severe asthmatic to be considered for this? Are you on daily pred tablets?
Yes I'm considered a severe asthmatic and on daily pred fostair and montelukast. It's not good to be on pred long term so hope I can stop if I start the injections.
I was on omalizumab for 3 years and came off it last October and swapped to mepolizumab which I have been on since. I have been on pred since January so now stopped mepo and going back on omalizumab. I have severe allergic asthma and the omalizumab seemed to control both my allergies and asthma better than the mepo. Hope you find one that works for you. I'm thankful I can just swap back but there are so many new drugs in the works.
Forgot to say. I'm currently on fostair - I was on symbicort prior to that. But while I was on omalizumab I only needed pred when I had a flair up which wasn't very often
Thanks. I was hoping the injections were going to replace the meds but it seems not the case. Trial and error with these things I suppose.