I’ve been on Xolair since Jan/Feb and my asthma has been amazing! I literally got my life back and have been so happy (bar that of driving myself crazy shielding).
On Friday evening and Saturday morning, I completely forgot to take 3 doses of antihistamines, 2 doses of Flutiform and a dose of montelukast. I have never missed a single dose of anything before and have no idea how taking my meds completely slipped my mind.
Because of this, I’m suffering a real nasty flare and am so cross with myself! My chest is tight, I’m breathless, tired and the fatigue has knocked me for six. Even my peak flow has dropped 18% (my peak flow never drops, even during an attack).
I’m not looking for sympathy because this is my own doing but my goodness, I’m feeling sorry for myself right now 🙈
Written by
MrsCMK
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Don’t be so hard on yourself 🙂. You are human and have a busy life. I know I couldn’t remember all those meds! Also you shouldn’t blame yourself for something your body does. Asthma is in no way your fault and it’s tough going just to get through the day sometimes. Keep an eye on that peak flow and get help if you need it.
That’s quite true- thank you. If it’s taught me anything, there’s no room for complacency! I was having such a lovely day on Friday, I think that enjoying the company of my family and having some fun totally distracted me.
Just hoping this flare doesn’t last too long so that I can enjoy myself out of shielding some August 16th!
Hiya, as Jungle Chicken says don't beat yourself it's easy to miss a dose.
I have my inhalers and a weekly pill organiser by my bedside. I take a drink of water or squash to bed use half the drink with bed time tablets and half in the morning.
For a while I had my inhalers by my toothbrush as was suggested to me.
Poor you. I think also that if we’re feeling good for a while on the right meds, that the instinct is that if we miss a dose it isn’t the end of the world. Then we realise actually it does matter. I’ve done it too. Don’t beat yourself up. Make a note of how long it takes to get back under control again.
I hate that. And with as many meds as we're on, it's easy to forget to take them. I have alerts and reminders on my phone and still forget some days. We're only human
I recently had to cut antihistamines for several days before an allergy test and was reminded how dependent I am on them! I was so miserable! Makes sense you're having a set back while your body readjusts.
I sympathise - if I'm in a rush in the morning with 10 different things whizzing through my mind, I'll think "did I take my inhalers this morning today or not?" (though this usually only happens on days when I feel ok and my lungs aren't crying out!) It's like brushing your teeth, you just do it on autopilot. I'm glad you're feeling better on Xolair, I've been trying to get on it for years due to allergic asthma getting worse and this year have had to take daily Pred for the first time.
Thank you. Xolair has been a game changer for me. I still consider myself lucky to be on it as I often wonder whether my asthma was bad enough? I hope you manage to get on it soon 🙏🏽
Me too. Keep being told my FEV1 isn't bad enough (they say it has to be below 80%, mine is 84%.) Been having multiple courses of steroids lately so I fit the criteria in that way. I get the feeling after 4 years of asking they are just fobbing me off now because Xolair is apparently very expensive. I think it depends on the consultant - the one I had initially was very keen on it but he left to work abroad and the other two who are left are a bit more sceptical about it. Yes, it's expensive treatment but so it keep going to the GP and having numerous hospital appointments! Waiting for a referral to a different hospital to push it forward. Glad it helped you and hope you stay well. x
I think you’re right, a lot of the time it is the consultant. I didn’t fit the criteria exactly but I feel quite privileged that my consultant took the time to understand that my asthma isn’t text book at all. Have you had the methacholine challenge test? I had it because my FEV1 wasn’t low enough and reversibility was coming back negative. I didn’t exactly pass the methacholine challenge test to qualify for Xolair but my consultant started me on it anyway.
I’m sorry to hear that you’re not getting listened to. It really is a postcode lottery, which is not fair 😥
Well I had the methacholine test late last year and there wasn't much of a reaction but since my allergies are pollen-related (aspergillus, moulds etc) I didn't expect there to be much of a reaction. Between flare-ups I'm not too bad, it's just the flare-ups are getting more frequent and taking longer to bring under control. One pack of Pred 40mgx5days used to be enough, now it's several packs with reducing doses. I spend most summers stuck indoors at home, can't go abroad as have had to curtail numerous holidays due to flare-ups, lost my last job due to sickness absences. The montelukast seems to have brought down my IgE from about 500 to 190 but has not done anything to reduce the breathlessness which is strange. The consultant who left seemed much more willing to judge my case on its merits whereas the team he left behind are very much doing it all by the book. But I'm in a positive mood today so I keep in mind that others not only have it much worse but people such as you have got Xolair after a lot of persistence, so thank you for your inspirational story and I'll keep trying!
I think many can relate (I recently went to my cottage to visit with my family for three days, and I forgot to pack all of my meds!). It is so easy to do, as life can get busy or you are feeling well and just forget. Then it is a time to get back on track. Hope you are feeling better soon.
I forgot to place my prescription in time and had to miss a day and I was utterly miserable! Choked up through the night and now my lips are all chapped 😑
Despite there being literally nothing happening due to lockdown, I don't know if I've ever felt so chaotic!
I know my asthma would have flared up terribly a year or two ago, but since being on 3x150 Omalizumab every 4 weeks, I have been able to manage. This medicine has given me moments of forgetting I have asthma at all... When I don't mess up my regular treatment that is!!
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