Diagnosis, finally!

[amberx]

So I had my first injection 2 weeks ago, the side effects have just been similar to what I had with steroids. Not the most pleasant but my chest has settled a lot with this alongside my 3 inhalers!

I finally got a diagnosis of severe refractory eosinophilic asthma, which is something considering for the last 6 months they've never been exactly certain as to what's been going on other than the narrowing of an airway. Has anyone else got this too? I'm scheduled for another CT scan and full blood count. My consultant wants to see what damage has already been done to my lungs and if any more tests are needed.

I should hopefully get the decision as to whether i get the new injection soon too.

I feel incredibly emotional and just down about the whole situation. I know it's probably just side effects talking.

Sorry for ranting, as usual.

Any advice or experiences are welcome and I'm extremely grateful for any ☺️

[amberx]

Hello! It's triamcinolone acetonide at the minute which is basically just a steroid injection, but I'm waiting to be approved for the mepolizumab injections which my consultant thinks i will be. Thank you, i find it's draining the life out of me most days and then there's things I want to take my 3 year old to do like trampolining or wacky worlds that I can't because I know my lungs won't be able to handle it.

I think I spoke too soon, I woke up yesterday morning wheezy and my chest tight but I suppose it's something to feed back to my consultant when I get my next injection in 2 weeks. It seems to do this, get a lot better and then plummet downhill very quickly. I'm just glad that now they're trying more things and hopefully will find something that works long term.

Yeah I've found that, it's taken a lot more seriously now and scans/tests are almost rushed through. I will have a look thank you!

I bet it's difficult to manage your sons asthma and your own! Is he having injections?

I hope so, i think it's just when I think about it all I start worrying but hopefully it will be fine. That's good! Oh of course.

[amberx]

I'm really hoping I get it. The appointment I had when he told me about putting me forward to get it was rushed as my son was also in hospital with a lung infection at the time, so I didn't get to ask all the questions I wanted to. I just got a leaflet and told that he'd contact me when they made a decision. I think when I go for my second triamcinolone injection I'll just explain then that it's only working for a short period of time and then my symptoms are just going back. I have an emergency pile of pred but I don't think I'm supposed to use it whilst on this. I hate steroids in all honesty, yes they do the job but after being on 40mg for 5/6 months, the side effects are dreadful and the minute I stop taking them it just goes back to how it was. Thank you, I will do. I used to ring my nurse at least twice a week if not more because I was struggling that much. I will do thank you, sometimes I feel like I get looked at as a child still.

That's good, it's like a sigh of relief finding a treatment that just works after spending so long on different things isn't it? Of course, I've been reading up on it and it's definitely worth trying. It will be for the foreseeable future, being reviewed every 4 years.

I have just read your post, your son has been through so much bless him, as have you! I can't imagine how difficult it has been. Oh my gosh, how long was he on pred for? I have 3 inhalers alongside the steroids and now injections. 2 steroid and then a reliever. It's worrying to hear about things like this that can happen from taking a medication that is supposed to help! But I know it happens unfortunately. How did you find out about this? Did you ask for the test to check the levels or did they just do it? That is so awful, I honestly hope they find the right treatment for him and that it all gets easier for you both. No don't apologise!! I can imagine it being, it's never easy and to see your child go through that must be horrendous! My son has been in and out of hospital since he was 3 months old with his chest. Literally the same time of year, every year and then twice this year already and once over Christmas with lung infections that just didn't clear. I am starting to wonder whether he is going to end up in the same boat I'm in but they wouldn't even diagnose his asthma because of his age, he got a reliever inhaler and that was it. It's hard to watch your children go through something you can't do anything about, so my heart goes out to you - you're doing a fab job. Sorry for the essay also!