Starting Xolair Treatment..but nervous - Asthma UK communi...

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Starting Xolair Treatment..but nervous

JustR
JustR

I’m 38 years of age..asthmatic since age 1..I’ve always experienced asthma flare ups but since my teenage years I would say I’ve successfully controlled and lived a normal healthy life with asthma. Last year my asthma took a dark turn, I came down with a bad strain of flu..hospital..breathing rehab etc.. and it’s now been severe for over 15months. Daily prednisolone for the last 15months..varying doses when my asthma flares..Horrible side effects that I’ve just learnt to live with. Mother to 6year old twins..I’ve had to stop working and life has just changed...physically I’m weak..I’ve tried tapering off the steroids and just hit a brick wall at 10mg!

My consultant got in touch today to say I’ve been successful in getting onto the Xolair injection treatment..it’s a glimmer of hope..

I desperately want to get off these steroids. I’m reaching out to find out about people’s experience with this treatment? Success stories? Side effects? Any suggestions?

40 Replies
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Hi,

I was on Xolair in 2013 after many years of severe asthma, 5 or 6 stays in hospital, permanently on and off steroids and antibiotics.

It gave me my life back, I could stop the 4x a day nebulisers, I could come off some other meds and I had fewer stays in hospital, I was on it for 4 years and was swapped over to Mepolizumab (Nucala) after a bad bout of pneumonia reduced the effects of Xolair.

When I had my 1st injections I had to stay in the hospital for 2 hours to make sure there were no side affects, after that it was only a 20 minute stay. I have been self administering the injection since October, I've seen on here that a lot of people are being set up for this since the lockdown started, I find it quite a simple process, it saves a lot of time and stress not having to go to the hospital, so after a few months you will probably be the same.

I hope you get the same benefits of taking the Xolair treatment.

JustR
JustR
in reply to TuckBox2

Thanks for sharing your experience, sounds like the treatment helped and just like you I want my life back.

I’m nervous about going into hospital this week to get my first injection but they have tried to reassure it’s safe and I should only need to stay an hour. Hoping longer term if it works I’ll be able to administer at home.

Fingers crossed and thanks again!

I have a very similar story as you. I had asthma all throughout my childhood and 20s but it worsened significantly in my 30s and the tiniest things could set me into a tailspin. I started having week and month-long attacks and I was on prednisone so often I developed adrenal insufficiency which is a whole other medical battle.

I started xolair last year when I was 38, too, and it took about six months to kick in. Once it did I felt lightyears better and I haven’t been on prednisone since then. I still have to avoid all my triggers like crazy but my day to day life is much more manageable.

I still take the highest strength symbicort 2x daily and an antihistamine and nose spray but I was able to stop using a few of the other supplementary inhalers I was on.

Overall xolair is a game changer and I am so grateful for it.

Take good care and let me know if you have any questions, I’m happy to share more about my experience if it’s helpful.

JustR
JustR
in reply to hilary39

Hi Hilary, thanks for sharing and yes sounds like we’ve gone through similar experiences with our asthma.

What we’re the symptoms of your Adrenalin insufficiency like if you don’t mind sharing?

Just feels like I blinked and my asthma just changed in an instant. I was so weak for so many months.

I’ve been on Symbicort for years but last year they asked me to switch to Fostair x8..and I take Tiotrpium.

It’s great to hear you had a positive experience with Xolair and managed to come off the steroids, this is ultimately my goal. Being on steroids long term at 38 just isn’t what I want.

What dose of prednisolone were you taking when you started Xolair?

hilary39
hilary39
in reply to JustR

Constant prednisone use can cause what’s called secondary adrenal insufficiency. I’m pasting a link about it below. My symptoms were exhaustion, dizziness, hair loss, nausea etc then I went into a full blown adrenal crisis and wound up in the hospital and was finally diagnosed.

Ask your doctor for a cortisol test just to check your level. I am shocked doctors don’t test our cortisol regularly when they put us on long courses of prednisone. So many of the people in my adrenal insufficiency support group are severe asthmatics who developed it after long-term prednisone use and it was something I’d never even heard of til I developed it!

I wasn’t taking prednisone daily, I just had a ton of courses in a row over the course of several years. Usually the regimen was to start at 50 mg and then taper down for 1-4 weeks depending on the severity of the attack.

Don’t want to worry you—it’s pretty rare to develop SAI but I like to share my experience since it was such a shock for me.

Thank goodness for xolair! I really wish I’d started it sooner.

webmd.com/cancer/what-is-ad...

JustR
JustR
in reply to hilary39

Oh gosh, sounds like you really had a tough time with it. I’ve read about the SAI but never been tested which I always found strange.

It’s like they just prescribe you the steroids and say get on with it. I’ve been left to just motivate myself to taper down over the last year. When I have flare ups they just suggest increasing which is like starting back at one again. So when the call came to say I could start Xolair this coming week it’s really given me some hope.

Nervous about going to hospital to get the injection as I haven’t left the house for 10weeks but your experience has given be some encouragement that I need to get on with this and give it a go..keeping my fingers crossed.

Thanks for the link too, I’ll have a read and ask the questions.

hilary39
hilary39
in reply to JustR

See if you can get a prescription for self injection xolair after your initial one—I’ve been doing that for months and it’s super easy.

Also I actually just got over covid and my lungs were ok which shocked me (just in case it’s helpful to hear from a fellow severe asthmatic on daily steroids :-) )

JustR
JustR
in reply to hilary39

I hope your recovering well from covid, it’s actually really helpful to hear from fellow asthmatics coming through the virus as I feel we were just scared into thinking if we got it...that was it!

I’m not going to lie, I’ve been so paranoid.

Self injection sounds the best way forward. Take care and I’ll keep you posted as to how I’m getting on.

hilary39
hilary39
in reply to JustR

I completely understand—I was so anxious about getting it beforehand that it was almost debilitating. I was so so cautious and almost never left the house but I think I picked it up during a quick run to the pharmacy for an inhaler :/

It was an unpleasant few weeks, it was pretty bad for days 4-9 or so and then I was exhausted for an additional week but I’m perfectly fine now and so so grateful that that’s the case. I’ve known a few other asthmatics who’ve had it and have fared ok too!

JustR
JustR
in reply to hilary39

Really positive to hear you recovered from it well.

TuckBox2
TuckBox2
in reply to hilary39

Hi, my adrenal glands have gone the other way. Last April I had an episode of diverticulitis, when having a CT scan to check this they found a tumour on my adrenal gland, this was tested and was benign, but after more tests I was diagnosed with Conn's Syndrome (Hyperaldosteronism) patient.info/doctor/hyperal... where my adrenals are producing too much aldosterone, this can lead to high blood pressure (I've had 20+ years) can also lead to strokes and heart attacks. I was having tests to find whether it was Addisons, Cushings etc. Anyway between tests last August had a heart attack and needed 1x stent fitted. Due to my HA this put follow up tests for the diverticulitis and tests for Conn's on hold. I finally had an Adrenal Venous Sampling done on 10 March (this is to determine which gland/s is faulty) then it would be removed and should resolve a lot of my problems. But this virus has put all of this on hold yet again. In the mean time my wife and I both had a chest infections we were put on antibiotics, I had a couple of trips to A&E and was swabbed for covid and was tested +ve, I was advised to quarantine myself at home for 7 days, and anyone else at home (my wife) for 14 days. We were already self isolating due to the chest infections, and I was trying to get my shielding letter etc. but after 14 days we were able to go to the local shop for essentials until we started getting govt/council food parcels and priority supermarket delivery bookings. We are both really well now, still shielding, missing our families grandchildren, phone & video calls help but are not the same.

JustR
JustR
in reply to TuckBox2

Sounds like you’ve had your share of challenges and then to have picked up the virus too must have been testing. I hope you and your wife have recovered well. It’s such a hard time not to be around family and have their support. Let’s hope things start to change soon.

TuckBox2
TuckBox2
in reply to JustR

yes we are both doing fine now, no problems at the moment.

I actually had a neighbour come in yesterday and give me a hair cut, it feels really great and she did a good job too.

hilary39
hilary39
in reply to TuckBox2

That all sounds so hard. I hope you can get the tests you need done soon! It’s a terrible side effect of covid how many people can’t get the medical care they need bc the doctors are so busy (valiantly) taking care of all the wick people :/

My son has been on Zolair for about 5 years and it’s been highly successful.

I hope it works for you.

JustR
JustR
in reply to angievere

Thanks for sharing and it’s great to know it’s helped your son. I’m trying to stay really positive and firmly keeping my fingers crossed that it will help me too.

angievere
angievere
in reply to JustR

Let us know how you get on. All the best.

Meant to say, he had no side effects either. Very successful.

Hi wishing you all the best for your xolair treatment and hope you get relief from your symtoms.

Hi. Been on the treatment for over a year. It's working well with me, nowhere near as many steroids, and actually getting some quality of life back. Hope it works for you

JustR
JustR
in reply to Keithr24

That’s great to know your doing well on the treatment. I desperately want to get off these steroids if possible.

Keithr24
Keithr24
in reply to JustR

Well I have not been steroid free, and tbh when I have had to take them have been floored by the side effects. But for the first time in 2 years I have actually managed to do gardening etc., hope it goes well.

JustR
JustR
in reply to Keithr24

I get down to 10mg and then just can’t go any further. When I increase the dose the side effects are horrible. I hope you continue to find progress with them. Being a little active in the garden must feel so good.

Keithr24
Keithr24
in reply to JustR

It's an amazing feeling being able to garden. Downside is the prolonged use of steroids has given me osteoporosis and osteoarthritis, so not as mobile as I use to be, but still, it's great being able to do something I loved.

JustR
JustR
in reply to Keithr24

Sometimes it’s just the little things that make us happy😊

Hi there.

Congratulations on being approved! It sounds like you could really do with it working. Everything crossed for you!

I’m on my 4th dose of Xolair it’s been like a miracle drug for me. I have severe allergies (pollen being the worst) and for the last 3 summers, I’ve not been able to enjoy the outdoors or even sit in my garden as “the outside air” would triggers multiple attacks. A few days after my second dose, I felt like a new woman. I sit in my garden every morning with a cup of tea and enjoy listening to the birds and I now have so much energy because I can actually breathe properly (it’s just a shame I’m shielded and can’t make the most of it).

I was super nervous before starting but it’s totally fine. Good luck for your start date 😁

JustR
JustR
in reply to MrsCMK

Hey, that’s so great to hear it’s been so successful for you. I can only hope it works for me too. I’m nervous about going to the hospital in the current situation but they’ve reassured me they are taking all precautions.

Let’s hope we can stop shielding soon so you can make the most of feeling good😊

Best of luck with with your injections.

I have been on prednisolone for over15 years-like many others cannot get off the drug.Yes the side effects of long term use are unpleasant but have been blessed with 15 years I wouldn't have had without taking it.

Please always take medical advice re reducing prednisolone it's not something to be attempted except under strict supervision.

I wish you well

JustR
JustR
in reply to ninelives

Thank you, I’m really hoping it helps me shift off prednisolone soon. I know it’s a great drug to help but I’ve never experienced not being able to come off it and it’s scary. My consultant has tried to help me reduce over the last 15months many times but I just can’t seem to get lower than 10mg. Fingers crossed I have some success with Xolair!

I did also try Xolair.

I came across a protocol a while back think it was on the Asthma forum about reducing prednisolone under medical supervision.If I remember correctly it was small baby step reductions closely monitored by the medical team and taken over quite a long period.

Sorry can't remember the post.

Best of luck .

Just got back from my 1st injection and it’s all gone well. Not going to lie I was super nervous walking into the hospital but the nurses were amazing. All in full PPE kit and I was in and out of there quickly. Next one is in 4weeks, keeping my fingers crossed🤞

Hope everyone is keeping well and staying safe!

Hi JustR

Glad it all went well.... 🤞it works for you...

Thanks for posting about your experience.... I am having my first Benralizumab injection on Tues.. and am feeling a bit nervous as I’m just not sure about it at all..?😫 but I can’t go on like I am atm.. not on pred all the time but near enough..

So it’s really great to hear your experience.. And that the nurses were good.

Here’s hoping we all feel better soon on these new drugs!😊👍👍

JustR
JustR
in reply to Pipsqueak77

Hi..I felt the same way, but honestly after going today it makes you think about your own health and how it could make a difference to not being on pred all the time and the difference in quality it could bring. It’s been really positive to hear about people’s experience too.

I hope Tuesday goes well for you🤞and that you take well to the treatment.

EmmaF91
EmmaF91Community Ambassador
in reply to Pipsqueak77

Hi. Good luck on Tuesday!

If it helps I’ve now been on benra over a year, and have found it has really helped (I managed 6 months without admission, and then managed to wean down to 2mg pred before hayfever started... this is after 3 years of pred never lover than 10mg, and pre any bio I was in resus every 1-2 weeks... so major improvements!)

Side effects wise, on the day of dose I tend to get a mild asthma/angiodema/urticaria flare (easily dealt with with vent/fex), and a headache/tiredness (usually paracetamol/sleep will fix that and the next day I’m good). After that it’s mainly mild aches and pains, fatigue and headaches which are again manageable and I can work through them (they were a lot worse on Mepo). My first dose combined with just getting out of hospital, so I’m not sure if it kicked in immediately after the first dose for me or if it was the other treatment, but for the first 6 months of treatment no admissions, and so far all admissions since being on it have been due to underlying infection, or allergy (which benra doesn’t help with).

I really do hope you get all the benefits, with none of the side effects and can get some control back soon so you can enjoy life again (I’ve actually been able to plan stuff and been confident I’d be able to do it for the first time in years 😱!)

Hope it goes well!

Pipsqueak77
Pipsqueak77
in reply to EmmaF91

Hi Emma91

Thanks for the advice regarding side effects... It’s really helpful to hear from someone actually having the drug!😊

I must admit that the side effects have worried me so much that I actually put off having the injections.. but spending last week in Costa( hosp!) was the final push I needed. I can’t manage my job/family/life like this anymore.. so I have taken the plunge... I hope the Benra continues to work well for you.

JustR - I hope you start to feel the benefits really soon... sorry for hijacking your post!😜

Please let us know how you go on!

All take care..😊👍

JustR
JustR
in reply to Pipsqueak77

Lol..it’s no problem..it’s kind of reassuring that were not in it alone..

Keep us posted how you get on🙌

JustR
JustR
in reply to EmmaF91

Hey..it sounds like your having a positive time with the treatment which is great to hear.

And to get back to a feeling of some normality is just amazing..enjoy every moment😊

Hi JustR

Many thanks for the moral support!!😊

Fingers x all round!!

Take care and stay safe...👍

Best of luck to everyone on here starting biologics! I hope they improve things for you!

I unfortunately had to stop xolair after a few months because I couldn’t reduce my steroids enough to stay on it but never had any issues with side effects from it.

JustR
JustR
in reply to Js706

That’s a shame they didn’t help you reduce off the steroids..I hope you manage to find an alternative way to help manage your asthma.

Good to know you didn’t experience any side effects.

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