Biologics : So finally after several... - Asthma UK communi...

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Biologics

Titch1908 profile image
Titch1908

So finally after several severe asthma attacks the community consultant has finally done my referral for biologics after the respiratory nurse and physio sent a few emails!

What do I expect to happen next? I know they don't do them in my area so it's a 2 hour trip to Plymouth and then 2 hours back but they say it will be life changing! So well worth it!

20 Replies

Not on biologics but congratulations at last!! There are others on here with experience of the different biologics than can offer there experience I'm sure. X

It has taken long enough! Frustrating it's taken them so long but at least it's been done now though I'm expecting quite a wait! Due to have a laparoscopy in 8 days. Am quite worried about the general anaesthetic and my asthma 😬. Hope that you're well xx

My experience won't be very helpful (except post referral it did involve more tests, the referral was just the first stage) - but it can be life-changing for some people, yes. If it/they don't work it's less life-changing 😅

I just had my second biologic injection and the amount of improvement after the first was extraordinary. They have counselled me not to be disappointed if I have some ups and downs as it takes time to bed in, but I already feel much better. So far, it is so worth it!!! Good luck!

Hi glad you are going to be getting the treatment , I hope it works for you

I’ve had all the biologics so far as I know ( 3 in all)

First one mepolizibub was brilliant I was a new man fir around 8 months then unfortunately it stopped working, after a short break they tried another called ramiizibab but unfortunately had a reaction after a 2nd dose, another few months later they started me on benralizibab I think it was called but after another 7/8 months they stopped it as it wasn’t doing anything

Apparently there’s a new one coming out that should suit me so I’m now waiting for that

But that doesn’t mean it won’t work for you, I spoke to some people who were able to get off steroids completely and are doing great on them

So you should be looking forward to trying one and I hope it goes well for you, other than the reaction I had to one I didn’t have any side effects at all so it’s good in that way

You should notice the benefits within a few hours

Good luck and I wish you well 👍🏻👍🏻

Mickeyboy25

Been on fasenra since February has changed my life so far actually feel like I dont need my preventers and add on tablets like uniphyline. First part was a 3 month trial of a steroid called triamcinolone to see if my body reacted well then got the jab. Hope it all goes well for you

I've been on xolair for two years and it has been great. I take prednisone far less frequently--I haven't had to be on it in almost a year at this point (though being inside with covid has meant fewer triggers). I would usually take 4-5 courses a year before Xolair.

I often forget how well it's working but then at the end of the month right before I'm due for a new dose, my asthma often worsens until I've had my new dose and it kicks back in.

Hoping you find one that works for you! It did take six months fo me to feel a difference (and others on here have said the same) so be patient if it doesn't feel like it's working right away.

Thanks everyone for the positive responses. I'm aware they may not work, however anything that gives any hope at this point I'm good with. I'm currently housebound except for hospital trips/admissions , using nebulisers 4 times a day, taking long term high dose pred alongside my inhalers. My life has come to a complete standstill to be honest and I'm just grateful to be able to work from home! Thanks again everyone.

Congratulations and I hope that you qualify quickly with the application. I am on Biologics and once the referral was sent it did not take long for the application to be approved. I am on Nucala and I administer the injection myself which is very easy It is just like the pen that is used for people with diabetes. I get the medication delivered once per month and store it in the fridge until the day to use the medication. This may seem a little bit daunting but do not worry a qualified nurse will visit you for the first 2 injections and will show you everything from the storage, administration, etc. I have been doing this for 8 months now it takes approx. 10mins to do the injection, and all that I feel is as they say a small scratch. The benefits in my case have reduced my stays in hospital from every 4 -5 weeks to at the moment 14 weeks. Incidentally along with other problems I have a number of lung problems but I always think there is always someone worse off than me and get on with my life.At long last things appear to be getting back to more normal state

Stay Well and Keep Safe

Wheesy profile image
Wheesy in reply to Wheesy

I suppose I am lucky as my Asthma Consultant is on the panel for biologics.

Do you know if you’re definitely getting it yet? It took me quite a while from thinking I might get it to actually having it, maybe about 3 months. They go through lots of tests to see if they think you will benefit from them, all the breathing tests, an 8 page questionnaire, a 3/4 hour phone consultation and a half hour with the respiratory nurse, blood tests, then it goes to their department meetings to see if they think it will work. If you get it and it works like mine it’s a life changer, I have Eosinophilic asthma and I’ve gone from can’t do much at all to not much that I can’t do within the space of 6 weeks. Keeping my fingers crossed it carries on working.

Titch1908 profile image
Titch1908 in reply to Yogiyogi57

Well they've done the referral. I have been on long term pred, several hospital admissions with life threatening and severe attacks, I use a nebuliser at home as well as inhalers and other meds. My consultant, respiratory nurse and physio have said they are certain they will be doing it and in hospital they have spoken with derriford aswell as to whether they felt that was the best next step and they said yes and I've had a heart scan and CT scan done very recently for this referral and bloods and am having bloods done regularly anyway and derriford told them not to change my meds and inhalers for now until they see me and we go from there. I can't even leave my home, just about manage to look after my children can't even have a shower without being so breathless or get dressed most days without help. They've said there isn't really much else they can do for me and that biologics is the next step. The only thing I haven't had really is the breathing tests recently but derriford had said they would do them there.

Yogiyogi57 profile image
Yogiyogi57 in reply to Titch1908

Good luck then and hope it works for you. I used to hate having a bath or shower as I presume the steam affected my lungs and had to sit on the bed to recover. Last summer I used to get half dressed upstairs and bring the rest downstairs and finish gradually. Makes me smile now but isn’t nice at the time. I’m doing exercises now to try and get some fitness back but I’ve just come in from playing golf with no real problems.

Titch1908 profile image
Titch1908 in reply to Yogiyogi57

That's really good. I'm doing exercises with the respiratory physio but we only do 1 min a day and 5 sit to stand because I can't do anymore at the moment. I have surgery next week for an unrelated issue and that's going to aloe everything down a bit and potentially make it worse for a while but going to keep trying.

I’m on xolair and when I got my first one they gave me information about the types of biologics and why xolair is the best one for me they also did blood tests to check my ige levels so they knew how much xolair I needed then I had to wait 2 hours after to make sure I didn’t have any reactions after about 4 doses of xolair I only wait half an hour now

I have very high IGE levels, I think this was the one the consultant said they would likely try first but can remember.. That's good, I hope that it's working for you!

It is I use to be in hospital every week I have only been once this year

I was referred and at my first appointment they were able to identify I had eosinophilic asthma. I was on optimum treatment requiring regular oral steroids. Having to take them for longer periods of time. I met the criteria and was offered Benralizumab. It has been life changing. No symptoms at all since my first injection. Not the case for everyone, but that has been my experience.

The initial tests are worth it and eventually you might be able to inject yourself at home.

The specialist asthma team take the time they need to figure out all the causes of your symptoms. For instance they identified I was anaemic, I had a bacterial infection, I had booster vaccinations etc.

I would tell you that it's worth talking to them.

I hope it works out for you.

Titch1908 profile image
Titch1908 in reply to Hamscoul

That's amazing for you! Bet its such a relief.Yes I was told the first 4 injections I'd have to go there but after I'd be able to do it at home and that they would give me an epi pen in case of severe reactions.

Really glad it's worked for you!

Oh good luck my friend! 👏👏👏

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