I had a meeting with my new consultant yesterday about new treatments as I have been steroid reliant for over 6 months now constantly. He has decided to put me on injections starting next week until the actual long term injections start in a few months. He has a board meeting with some other consultants in the region first but said I should definitely be accepted as it's chronic.
Has anyone had any experiences with the injections?
Also, I was in A&E a few weeks back with a flare up and severe agony when I was breathing, where they just did the usual - nebuliser, steroids, X Ray, suggested paracetamol, told me I was wasting their time just going for nebulisers and sent me home. Found out yesterday that I had actually broken a rib, they just failed to inform me 😟 since that I've been put off going to A&E when I have a flare up as I know how busy they've been recently and don't want to be "wasting their time" again. Has anyone had this kind of experience before?
Would love a miraculous cure so that I don't have to suffer through this anymore. Definitely exhausting me.
Sorry just needed a bit of a rant to and it's hard to find people that understand.
Thank you in advance for any advice/experiences ☺️
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amberx
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Hi amberx : I will be interested to see how you get on , as I have been steroid dependant for a year now , and am awaiting an appointment in Leicester.
I am appalled you have been told you are wasting the medics time inA and E, and would suggest you ignore their comments. When already on steroids, and used up all the agreed doses of inhalers at home, I have to go to my GP for a nebuliser or A and E, this is I trust to keep me safe, and for the medics, to check that things are not escalating to a dangerous level . Sometimes I am admitted having the whole treatment protocol sometimes just nebulisers ..... i think we all worry we are causing a fuss, but I grit my teeth and bear that, and believe in keeping myself safe regardless of what those admitting me think ...... please don’t take risks .... follow your asthma plan xxxxxx.
And I will be interested as to how your injections go, and what they are
Take good care of you , put your asthma plan under their nose and get the treatment you need, it’s not your problem they are busy ❤️❤️
Hi kiiam! I will keep you updated on how they go. When is your appointment? I hope you're not waiting too long!
I was so embarrassed by it, I don't think they realise sometimes that it's not a choice. Exactly, I have had episodes in the past that landed me in resuss twice so my nurse told me not to risk anything, if I don't think something is right that's what they are there for. She wasn't happy when I told her. It's not worth the risk is it, I seem to have to tell them what the procedure usually is and get an eye roll.
Thank you. I hope your appointment comes through very soon and that things start to improve for you! Take care ❤️❤️
Your right : I don’t think they do realise how we second guess ourselves, and pray we are not making a fuss : one admission I get told off for leaving it too late , on another, as you say the eyes roll at me, and I’m told it’s not too severe...... these days I try and go to my GP (daytime) who does a medical assessment , and I generally leave the decision up to them, and I most times we have already increased my steroids to 40mg before A and E anyway, and although that helps the exacerbation , the doctors don’t seem to take that into consideration in their treatments .
I had asthma as a baby (6months) untill I was 7 years, when it stoped , and re started around 6 or 7 years ago , ( I’m 58) .... and it has just gathered momentum , and is a constant daily feature, that seems to have a mind of its own..... I’m imagining the appointment won’t be for some months, but I’m happy to wait in a queue .... there seems lots of us out here needing help, just relieved there might be slight at the end of the tunnel, if not a cure then some clarity and help with dealing with it.
Sending lots of positive vibes your way, for some success with those injections ❤️❤️
Exactly! I don't enjoy being there, I've been there more the last 6/7 months than I have in my life before that. I'm sorry you've had that, it makes it so uncomfortable. Yeah, I will always go to my GP first if I can, it's only an A&E trip if it's out of hours or if I know it's an emergency. Are you on a constant dose of pred or is it just 40 when you have a flare up?
Oh wow, it's crazy how it can stop for that long and then just come back like that. I agree with the having a mind of its own, you never know when you're going to have a bad day. I've never suffered with breathing problems like this before, and within the space of 6/7 months I've been told it's chronic and I'll be on those injections for the foreseeable future. I have CT scans arranged so they can see the damage that's already been done.
Of course, it'll always be worth the wait. I don't think you realise the actual seriousness and severity of asthma until you suffer with it. My mum has had it badly all of her life and I always remember thinking asthma can't be that bad, it must be something more but now I have experienced it myself, i know it can be life threatening.
Thank you so much. Sending some your way too and hoping you're not waiting too long ❤️❤️
In answer to your question, I am trying to find the lowest dose of steroids , and not have an exacerbation. Its taken my GP a year to realise I’m on them much the time time,Its looking like I cannot get past 20mg , without a flare up. just got out of hospital after a five day stay, with strange and irratic flare ups going on , , I had got down to 10mg , but am now back up to 40mg again😔. So gonna try stopping this time at 15mg and see what happens . With the warmer weather, I might stand a chance ( mine is non allergic) . My mum has been a sufferer too most of her adult life , family genes heh!!!! 😂Yesterday I was pleasantly surprised , that my appointment has come through for the 9th April .... so here’s to a new start , xxxxxx
Keep up with that positive head, and I hope you get dome answers , and relief
I feel so sorry for you. No one should be put off going to a and e if they need to. I had a discussion with my asthma nurse about having nebulisers at home. I bought a machine myself for around £40. I try my inhalers first, but if they don’t help, I use the nebuliser. Have a discussion with your nurse and see why he/ she says.
Please get seen by someone if you need it. Asthma can be a life threatening condition. I think I would speak to PALS about your experience. It can’t hurt, and it may help you or someone else at future trips to the a and e department.
Did you have to buy the nebuliser machine or was that a personal choice, rather than receive one from the clinic? I have asked multiple times for one at home, and they've said that until they can get some kind of control over it they don't want me to have one. Just incase I use it when I should be going to hospital.
I have a lot of secretions. I suggested they prescribe saline to loosen them. I said I would buy my own machine. On talking to my asthma nurse, and saying how bad I had been the week prior to my appointment, we agreed that I should have ventolin nebules. I do, however, use my inhaler first. If I’m no better after about 4-6 puffs, I have a nebuliser.
Hi sorry to hear you’ve got it rough at the moment - hopefully this new plan will work well for you! Feel free to rant (it’s therapeutic! 😋)
Sorry to hear that you’ve had a bad a&e experience too - from my experience it always depends on the doc you get and the team that’s on shift - I’ve had brilliant support there and terrible! Been ignored and sent home only to crash again and need to come back in, but also been listened to and given more than strictly necessary to completely make sure an attack has resolved! I have a home neb for emergencies which can both help and hinder treatment in a&e, as I’ll do 2 plus up my pred to 40mg (maintenance dose of 10mg) before I think about going in (some doc take this as nebs not working give something more/different, others ignore this and keep giving just nebs 🙄)
Never had an rib # (defo sounds painful tho esp in combination with asthma!) but have had my obs ignored before (sats 91% BP 90/60 PF <50% and I was told it was a panic attack). I think it depends on the team/shift/time/busyness of the department as to how ‘good’ the treatment is... 😒
Have also been told that there was nothing they could do for me when I had a chest infection (bilateral crackles, query on pneumonia), so to just manage at home and not waste their time... I spiralled for 6 weeks on 2-4 hourly nebs before I went back, just to be given nebs and sent back home! Next day I broke down at my GP who sent me back in! I now have a ‘pass’ to amu outpatients so I can avoid a&e and get what I need straight away (so long as I time it right and aren’t stupidly bad!)
Regarding the injections, it depends what one they’re going to put you on! I’m now on monthly Xolair injections (since Jan 18) which seem to be helping me with only a few mild side effects (headaches, eczema etc).
Not sure what you’ll be getting weekly tho as the only other more frequent injection/IVs I’ve had as an outpatient is hydrocortisone which was a daily thing, or mag suplhate that shouldn’t be given more than a fortnight apart, as too much can make you worse...
Asthma is a serious, life-threatening condition, so if you’re bad go in! I have (good) a&e docs tell me they’d rather see me early (and be quick in and out with less paperwork for them and just nebs/hydro for me!) than me wait til I can’t cope anymore then requiring resus etc! You’re not wasting their time if your asthmas bad - from a lot of time spent in a&e I have quite a few true ‘time waster’ stories esp ones heard from the staff there... they never really complain about asthma (other than the odd 1 or 2 😒)
Hope this helps you... just remember you are not alone in these experiences! Hopefully your rib is starting to feel better, and 🤞 the new treatment helps calm things down for you! If you find the miracle cure, send some my way please - I want in 😅🤩😜!!! xxx
Awful times you are both having so sorry : but all I can say it is helpful to hear im not alone , and have had similar experiences .... not that the experiences are good themselves in anyway .... but it gives us courage to keep stepping into A and E to keep ourselves safe xxxxx
Thank you! I could rant for days about it, not the same when it's to people that don't understand the issue sometimes is it 🙈
Yes I agree, I've had experiences I couldn't fault and then just that time I wasn't happy at all! It's great that you've had those experiences too, puts your mind at rest when you need to go in doesn't it? Oh yes, I have asked about a home neb but they won't let me have one whilst it's still this bad. Does that seem to work for you? I have a safety supply of pred so I can go to 40mg if I need to, but I'm always on 20mg now until the injections start.
I didn't think I did until now. Definitely explains the amount of pain, I've had muscular damage before and bruised ribs but it's definitely something else. Coughing was agonising. Oh my word! I can't believe they ignored that! That's so dangerous, whether they're busy or not they should never ignore obs like that. It's scary that decisions like that are in their hands and you just have to trust it.
That's ridiculous. I'm sorry you've had those experiences, and I'm glad you've now got the pass! I have had times when I've been in given the neb, steroids etc.. sent home and then back in via ambulance the day after.
I think the one I start next week could be xolair but the one they're having a meeting about has a longer name that I can't remember. It's a lot to take in when they're talking at you and you're just trying to absorb it all. Ah so there's side affects too? Are they similar to pred side effects? The side effects have made me want to stop taking them a few times. No not weekly, sorry if it came across like that! I start my first one next week, then it's monthly until the new one.
I know, it'd be easier if they had a neb in a side room where we could just go rather than taking a bay. I think that's what causes the most issues.
Thank you so much, I really appreciate it. It does! Haha I'll be sure to fill you in if I do! 😂 xxx
Hi sorry for the delay in responding 😅 hope you’re starting to feel a bit better
Xolair (omalizumab) has a few side effects such as injection site pain, headaches, higher propensity for viruses, muscle aches etc. The worst potential side effect is anaphylaxis (0.01% after injection) so you’ should be given an epi-pen for just in case.
Personally I get headaches post injection and have had a UTI but otherwise no real issues so far. Long term effect-wise I think the main one is becoming immune to the drug, or becoming ‘more’ allergic...
I have my first injection tomorrow and I'm extremely nervous as to what to expect afterwards so this helps massively, thank you! I already catch absolutely everything, especially chest infections/colds so I'm not looking forward to that part. I work with children as well so you can imagine how much goes around haha, I'm just hoping for the best.
How long have you been on it for? I've been googling side effects worried about how I'm going to handle it. But I just keep reminding myself that it's supposed to help, and hopefully it'll keep me out of hospital.
Hi I’ve been on Xolair since late January (had 2 injection so far). Side effects wise I’ve also noticed my eczema seems to have worsened since i started it but I’m unsure if it’s related or just a coincidence! I may also have been a bit more achy and tired the first couple of days after the injection. I also had a burning sensation during the last injection which travelled into my armpit and down to my elbow from the injection site, however this wasn’t there the first time so it may just be a one time thing (had a different nurse doing it on the other arm than the first). It was manageable and lasted a max of 10-15 mins after the first injection (I have to have 3 each time).
On the positive I have noticed that whilst I have been ill (cold wise) my asthma was no where near as bad as it usually is when I’m sick! I actually managed at home, with no hospital visits during a mild viral URTI! And even when it snowed (a trigger unaffected my the Xolair) I felt no where near as bad as I did last time it snowed and only had one night in at my local after Bromptons insisted (had my injection when storm Emma hit and the bitter cold halved my lung function... I felt I could easily cope at home, but they weren’t having it). Any recovery from issues has also been a lot quicker too, not lingering forever like they used to!
I also got told that any of the mild side effects I may get from the injections (headaches etc) should reduce the longer I’m on the drug and I’ve already noticed that after the 2nd injection my headache wasn’t as bad and didn’t last as long as the first time.
Yes I work with children too (plus kids with disabilities) coaching gymnastics, and they love the ‘sharing is caring’ philosophy 😅. The parents of the disability groups understand the issue and don’t tend to bring them in when sick anyway, but the squad kids train unless really ill 😕. Got paranoid a couple weeks ago when one came down with the chicken pox the night after training, and it has since been passed round the groups. Hoping that as I’ve already had it 3(!) times it’ll avoid me as I’m older now... I really don’t what shingles!
So far for me the benefits have far outweighed the side effect... I’m hoping that I’ll be allowed to remain on it as I feel a lot better, however as I’ve still had a couple of attacks and 1 inpatient night, and 3 outpatient treatments they may decide it’s not worth it (I really hope not tho, cause I know if I wasn’t on it, I would have been in for at least the week when it snowed, plus another 2/3 trips in to a&e/outpatients on top of what I’ve already had!
Good luck tomorrow, wishing it works as well for you as it does for me (or better 😜)! Let me know how you get on
I was on xolair for a year Feb 2017-18. It worked fairly well with no major side effects for the first six months. Sadly it’s stopped have any effect after that so I have just stopped it. I was on a fortnightly does. The dosing is different according to IGE level and body weight at the beginning of the therapy. My only side effect from it was that I was extra tired for the rest of the day having had it.
Hope it helps sort things out for you. I’m still on high dose steroids. Have been for two years now. Three hospital admission and 5 a&e visits so far this year. Hopefully you will be on the up with xolair. Xxx
I am sure you would have had a different response had you told someone your ribs are hurting when you breathe, and you may have damaged your rib when you did something previously. The doctors/nurses are medics not mind readers.
It all depends on the doctor, who was working that night, how busy it was. She may well have complained of pain but got nowhere. If she had broken a rib, why didn't they tell her when they found out? Although I will admit that being in A&E can be a confusing experience. This means staff should make more of an effort so that the patient knows what is going on. I have had good and bad A&E experiences. I guess I just don't want her feeling that she has done anything wrong.
I did tell them that.. hence why they said to take paracetamol. My consultant suspects it was from coughing so violently. You're right they are medics, which is why they should have looked at the X Ray properly before they sent me home. If my consultant could see it, then an emergency department doctor/radiologist surely should have too.
I'm not sure of the name, I'll find out when I go next week.
@emmasue thank you. It was busy but I didn't think they'd skim over something when it comes to breathing/lungs/ribs. Possibly just a mistake, I'm not sure but it's better knowing now that it wasn't muscular as I could feel it was something more than that. I know nothing can be done for broken ribs but maybe stronger pain relief could've made things more comfortable. I have had good and bad experiences too, that one time just happened to be a bad one. Thank you.
I am sorry to read that you have been through this. I would complain if I were you. This is no way to treat someone in distress. It has happened to me before as well. My asthma nurse had the A&E sister ring me personally to hear my story. If no one complain, nothing changes or gets better. Most NHS authorities should have a Patient's Advice Liaison Service (PALS) for complaints. Since I have complained I have had a better time at A&E. It all depends on who you get though. Good luck and hope you feel better soon. I hope the injections work too.
I did contemplate that, I did ring my nurse the day after and let her know. She wasn't happy at all as she said that's what they're there for. It's not a common thing that I deal with that, I've been to A&E 10 times the last 6/7 months and that's just 1 out of 10. I'm glad you have better experiences now! Thank you.
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