Stuck in asthma limbo

[lucia_m]

Hi all. I’ve come here to have a little moan/rant about being stuck in that phase of asthma where you’re not bad enough to go to hospital but are definitely not ‘well’ in the sense of feeling good and being able to do normal things.

Since having a cold-induced flare up about four weeks ago I’ve been consistently on the borderline: nighttime wheezing, tight chest in the morning which clears up but leaves me feeling tired, dry cough. My peak flow is stuck at around 70-80%, which I don’t consider an emergency but it’s a little worrying that it doesn’t seem to be moving upwards (peak flow is usually a fairly reliable indicator for me). I think I probably need to go to the doctor and get some pred, but I’m reluctant to do that as it messes with my head and I can’t really afford to take more time off work at the moment. Since I’m on the highest dose inhalers, montelukast etc that’s the only thing the GP can do for me.

This is my fourth long flare up of the year. I’ve already had three bursts of pred and spent a few days in hospital during the really hot weather we had in July. I’d say I’ve been more ill than well on balance this year and the previous couple of years were similarly difficult. I can still work, I’m able to socialise and exercise when well but I have long periods when those things aren’t possible and life starts to feel a bit bleak.

I’m on the waiting list for the severe asthma clinic at Barts hospital in London, my GP thinks I may be a candidate for biologicals but that’s probably still a long way off. So for now I’m pretty much stuck in limbo. I’m very aware that things could be worse and I’m grateful that I can still go to work and live a relatively normal life, but it still kind of sucks to be honest.

I’ve rambled on a lot more than I’d intended here! Think I needed to get things off my chest (lol). Not looking for medical solutions, but if anyone can relate or also wants to vent, please comment!

[Junglechicken]

I really do sympathise with your situation. My asthma has been so bad after a dose of pneumonia. I had to go and see a specialist as my GP really didn’t know what was going on. I was doing so well for 3 months on my treatment then had a relapse at the end of October. I improved after pred but my peak flow has fallen from 94% to 72% over the last two weeks. Asthma is a very frustrating, frightening, uncomfortable and distressing condition and we all need to vent otherwise we’d just implode!

[ChrissieMons]

If you don’t have a consultant, you really need to get one! If you knew what was going to work for you, I’m sure you’d feel better. See if you can have a talk with a specialist as your physical health is affecting your mental health. Believe me, you are not alone in finding asthma depressing!

[hilary39]

I just wanted to say how much I empathize! I spent so much of the last year in the same exact limbo!!!! Miserable between prednisone courses, anxious about the inevitable flare up that would put me back on them.

I am finally enjoying some peace (for now at least) for the first time since a year ago. I think it was the end of the pollen/ ragweed seasons + my starting Xolair + a huge deep clean we did of the apartment (we also moved everything into bookshelves with glass doors which has actually made a noticeable difference, there is less dust in the apartment now).

I so hope you find respite soon! I understand, I really do. I love being able to vent on this message board to people who understand!!

I had shoulder surgery over the summer and it was actually quite painful and required a lot of PT and adjustments but I rarely even think about it because my asthma is so much more debilitating. But everyone keeps checking in about my shoulder because I think it is a much more tangible and easily understood medical issue. So few people realize how debilitating and life-consuming / ruining severe asthma can be!!

[selyab]

I would ask your GP to recommend you seeing the local ARAS team who are asthma specialist s I did and was given the spirits respimat inhaler which has helped me manage my asthma alot

[Nanny1086]

Hi Lucia, yes I have experience with Montelukast, however I do take mine in a morning as I found it gave my nightmares if I took it at night , I’m also on ventalin inhaler and Seratide and Respimat, I to have had a rough year this year , an operation in January ( not related ) and pneumonia in April , and influenza in August along with 3 chest infections this year , so like you I’ve found it tough , I am lucky , I am under a great doctor and consultant and the respitory nurses are amazing ,I came across them some years ago after a spell in icu with Sepsis, they were great and when I was recovered they suggested I go to Pulmary Rehab, and I did thank goodness I did , I found that to be the greatest help , I was diagnosed with asthma at age 42 I’m now 74 , I go to the gym twice a week and manage to cope living independently , I hope this has givenyou some encouragement.