Fed up

[Smegs1978]

Hi all,

I've been an asthmatic for 35 years, however since December last year my asthma has become unmanagable. I've always suffered with flare ups during the summer due to hayfever, but nothing that's really needed any hospital intervention.

However in December 2018, I had two really bad asthma attacks, two nights in a row that I should have called 999 for, but didn't and since then my asthma has been very badly controlled.

In the last 12 months, I've had 15ish admissions to hospital, 10 of which I've needed to stay in for, and about 15ish courses of steroids.

I'm now under the difficult to control asthma team, and they think I have eosinophilic asthma but I'm still waiting for an official diagnosis.

I'm currently on symbocort 400/12 and spiriva, they did try me on montelukast however it just gave me headaches and made me very thirsty and didn't make much difference to my asthma so they were stopped. I'm also on fexofenadine 180mg every day.

The asthma nurses I've seen have said I may be eligible for the injection treatment, or they could try daily steroids.

I've also realised that I'm now probably suffering with anxiety as well, which is causing heart palpations and I'm also exhausted all the time.

Just feeling a bit fed up, after spending my 5th day in hospital.

Thanks for reading.

[Jsc3]

Hi I have had asthma for 35 years now on injections called mepo what a difference to my asthma.not had steroids for 9 months and feeling great .started swimming and also lost weight so all helped .don't give up hope you will get there

[Smegs1978 in reply to Jsc3]

Thanks for replying.

The severe asthma nurse came to see me today and she suggested the injection, but she said the waiting list is huge, currently 100 patients waiting to start.

[Denae011 in reply to Smegs1978]

Hi I also have the same problem I had been Ill with asthma for months. I had hosp admissions etc. I was waiting for the fasenra injections and was told there was a long wait. However in October I was bk in hosp so they bumped me up the waiting list. I had first injection in November I’m getting the 3rd nxt week. It has made a big difference. My symptoms have reduced and I am back to work. I have a nebuliser at home and inhalers I also have an anti biotic 3 times a week and carbocisteine. I have reduced steroids to a much lower dose. I hope you feel better soon. Ask can you move up the list a bit for injection.

[Hidden in reply to Denae011]

So glad for you!

[Jsc3 in reply to Smegs1978]

Hi that's no good .keep fit and your turn will come .hope you keep well and stay safe

[hilary39]

I'm so sorry to hear that! You TOTALLY deserve to rant, that is so many hospital stays and it sounds like you've had to put up with an inordinate amount of suffering, fear, frustration, and anxiety this past year. The harrowing thing about our condition and flare ups in particular is that the only way out is through and it can be very isolating even when we are surrounded by loved ones.

This past year was really rough for me as well. Endless asthma attacks leading to 2-3 weeks of couch-bound recovery in which I was barely able to breathe and filled to the gills with prednisone. I developed adrenal insuffiency from years of steroid use and I'm now dependent on 20 mg hydrocortisone a day without which I could die--I still don't have my mind around it as it has been such a major shift in how my body functions. I'm just taking it a day at a time.

And an FYI, adrenal insufficiency is rare (my pulmonologist says I'm the only asthma patient she's ever had to develop it) but that said, one of my early syptoms was heart palpitations as my potassium was low so it might be worth them checking your cortisol level since you're already in the hospital-

I started Xolair in April and while it took about six months to kick in, I'm finally seeing some relief. I so hope you can get on a biologic as they make a world of difference for a lot of us asthmatics.

Take it easy and be gentle on yourself and your body. Sending a hug.

[Keeriwinki]

Hi Smegs1978 hope you find some useful info here, I was on the injections for almost 9 hrs, they worked great for me, got took off them last summer & have basically went backwards, asthma out of control, been on steroids constantly since, which is definitely not good for your body, hopefully you get on the injections. Rather than steroids.