Xolair: Don't gned to post much but do... - Asthma Community ...

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Xolair

Keithr24 profile image
11 Replies

Don't gned to post much but do keep up to date with messages.

After a severe attack in January 2018 with my family being prepared for the worst when in ICU, followed by pulmonary embolism on discharge, I thought it might be good to share good news.

I started xolair last November, and at that time was on a vast collection of tablets.

As of this week medication reduced to my spiriva respimat and relvar.

Last steroids where 6 mths ago for 10 days, and haven't had to use my slabutamol for 6 weeks.

pf back to where it was 4 yrs ago.

Granted now deali g with osteoporosis from all the steroids and in agony with osteanrhtritis..... But I can breathe and don't feel like carrying a heavy spo gs in my chest for the first time since 2016.

While I appreciate for many atm they wish they felt as good, but hopefully this might give some of my fellow asthmatics some encouragement.

Have a great weekend.

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Keithr24 profile image
Keithr24
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11 Replies
Tree20862 profile image
Tree20862

I have been on Xolair for 40 months. It took a good year to get feel good. That being said, I went 5 months and then 15 months between steroids by mouth. And I was only on steroids for 12 days each time. My last issue was a cold that turned into a sinus infection. That hadn't happened in a couple of years!

I love my xolair so far. Yippee!

Keithr24 profile image
Keithr24 in reply toTree20862

It's great to get relief after a bad run. Making the most of it, but mindful it's not a wonder cure.

Junglechicken profile image
Junglechicken in reply toKeithr24

Yes, that’s the rough of it. There’s no cure and you do permanently live in asthma’s shadow. Modern medicine has come such a long way and there’s always hope as it makes more break throughs. In so many ways I know that I owe my life to it.

Tree20862 profile image
Tree20862 in reply toJunglechicken

My husband does not understand why I still have asthma issues. Yes, they are so much less often but they get just as bad 😩

I will always be an asthmatic... Severe persistent is not going to disappear.

Junglechicken profile image
Junglechicken

That’s such good news about your breathing. I’m sorry to hear about the osteoporosis though. You have been through so much mentally and physically. You’ve shown such strength and courage. I’ve been struggling to achieve control over my breathing and this has been the worst asthma period of my adult life. Severe attacks but luckily no hospital admissions as I was able to control at home. Asthma is a cruel condition as it can, as in my case, give you a taste of relative breathing freedom for a prolonged period of time (25 years for me). Then bang it takes it all away, sometimes without warning. It’s great to hear such inspiring words and gives me hope that I can get my asthma under control again.

Keithr24 profile image
Keithr24 in reply toJunglechicken

Well I hope you do get relief. I had lived with asthma since a child, and it was only in 2016 when I was hopsitalized at age of 50 for first time colleagues even knew I had asthma, then again 1n 2018 but was critical. Yes it's been tough, having been off work sick for 12 mths out of the last 2 years.

I appreciate form the posts many not feeling as good as I am, but can remember they constant thought the light had gone out in the tunnel and there was no hope, so wanted to share that sometimes things do improve.

The other issues can be lived with, bei g able to breath and have some form of normality is novel.

I hope you will turn a corner soon.

Junglechicken profile image
Junglechicken in reply toKeithr24

Thank you. I’ve had no attacks since end of June after seeing a specialist and increasing meds with several add on treatments which is a complete relief that they have stopped (At its worst, I had two severe attacks in one day 3 hours apart. Then another moderate one the following morning. Looking back I think I should have gone to A and E). I genuinely thought I was dying. I was frequently hospitalised as a child for my asthma but it mellowed as I aged (I didn’t even use a preventer for 24 years). My asthma control was poor at the start of the year but I just ignored it. Then pneumonia came along and that was it. I’m still getting night symptoms but my salbutamol is working so much better. It’s the emotional recovery that is taking the time. Which I’m sure you can relate to from your experience.

Gilly100 profile image
Gilly100

So glad to hear that you are breathing better, Keith. Long may it last! Best wishes to you and your family.

hilary39 profile image
hilary39

Thank you for all the posts above everyone! I need some optimism about xolair as I’ve been on it for six months but am still really struggling. I had asthma as a child but it was under good control until my late 20s. I’ve has a lot of ups and downs the past decade but the past 3 years have been the worst of my life. I’ve had so many attacks and realllly long recovery periods and have been on dozens of courses of steroids. My poor adrenal glands are a bit fried. I’ve lost months of work and feel like I can’t go anywhere as my triggers are absolutely everywhere (cat and dog hair in particular). I so appreciate hearing everyone else’s stories here as it can feel so scary and isolating to suffer from this disease. I am glad to hear your story Keith and i hope everyone else is doing as well as they can this weekend!

Tree20862 profile image
Tree20862 in reply tohilary39

It took me a year to see the difference.

Keithr24 profile image
Keithr24

Well I hope in time things settle and you get some relief. Sometimes I felt that adjustments wo what you can't do were more difficult than the attacks, that and know g the impact the unplanned life changes have on family. Do take care.

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