Feeling lost

Six months ago my asthma went from well controlled to completely out of control for no clear reason.

GP started off saying it was pollen triggered and put me on steroid tablets for a few weeks.

GP then changed their mind and said upper respiratory infection and gave me antibiotics.

As soon as antibiotics finished breathing issues returned with a vengeance and it’s been that way ever since.

18 weeks on steroids, multiple new inhalers, big increase in antihistamines, 3 GPS, an asthma nurse and a respiratory consultant later and I still have no answers.

All tests come back clear but something definitely isn’t right.

Now on MART treatment which does at least provide some relief but I’m still wheezy and struggling to do any physical activity.

Its really starting to get me down now. I have no idea what to do next. I’m really keen to get off the steroid tablets but I can’t breathe without them. I just want to feel well again!

Anyone else experienced similar and come out the other side?

[Mogget]

Hi! I’m sorry to hear you’re so unwell. It may be a really prolonged flare which will settle but I’m no expert and perhaps others can offer their thoughts. You could also try chatting with the Asthma UK nurses - they are very knowledgeable.

On the other hand it might be that your asthma has worsened. It’s good that you have a respiratory consultant - they should try you on a mix of different preventer medications and if you max out those treatment options you may be considered for a biological treatment (like Xolair for allergic asthma or the ones used for eosinophilic asthma).

I’m in the middle of experiencing similar and hoping to come out the other side soon!

Keep your chin up

[ReedB]

Do you mind me asking how old you are?

Asthma can change no matter your age but changes in hormones could be a cause? Even something as trivial as a new washing powder can set things off. Either way once the inflammation takes hold it can take months to settle. I had a difficult year where I was on steroids and high dose antibiotics, nebs etc. It took 6 months to settle. Easy to say but hopefully things will improve but it's not always an easy fix x

[Hidden in reply to ReedB]

Thank you. I’m 28. I did wonder if it could be hormone triggered. X

[ReedB in reply to Hidden]

Mine kicked off when I was 21. Always had allergies but not asthma. 34 now and know my condition much better.... I hope!

X

[Idontknow748]

I know that feeling of helplessness when doctors can’t tell you what’s wrong

Walked out of the emergency room feeling so breathless and frustrated so many times

I too always went to the gym on the daily but ever since a month I haven’t been able to do much physical activity or even properly clean my house without getting breathless

[teddyd]

I have been going through a similiar experience. Mine started going crazy about May . I have few days thinking i am tirning a corner, then it goes all over the place again. Change of inhalers prednisolone etc. See the consultant in 2 weeks hope to get it stabilised.

[Hidden in reply to teddyd]

Sorry to hear you’re battling too but also hugely relieved to know I’m not alone.

It’s infuriating not knowing what’s suddenly set it off and doctors don’t seem to have any answers.

Hope you gets some answers from your consultant.

[hilary39]

I'm with you! I've been in a bad on and off again flare for a year now. It's been so frustrating as the triggers initially were clear--we (foolishly) allowed guests who have cats to stay with us and the cat dander got everywhere from their clothes / shoes / suitcases and I was a mess for weeks in spite of having the apartment cleaned professionally several times.

Since then we've not let anyone who has pets over and the apartment is cleaned professionally 2-3 times a month with all-natural products (which I've used for years and haven't reacted to-) We run air purifiers constantly and yet my asthma has been absolutely wretched. I am so breathless and miserable constantly. I've been on a dozen bursts of prednisone and hydrocortisone between the bursts. I take Symbicort, Spirivia, and Zyrtec daily and have been on Xolair for six months.

We moved here from the states two years ago so it's possible it's new pollens or the fact that some people in our building have pets. But my first year in the building I was pretty much ok so I'm not 100% sure it's that-

I'm at my rope's end and SO sick of feeling miserable. I empathize and hope to be on the other end of this at some point, too!!

[Hidden in reply to hilary39]

I totally sympathise, it’s utterly miserable. Why does breathing have to be this hard?