Brittle asthma battle

Hi all.

First time poster here.

I have suffered with asthma since childhood but now 18 it seems to have been worse the past year. I have had over 10 Hosp admissions including being in resus on drips and over 20 ane visits. I have had countless gp appointments and seem to get reoccurring chest infections and viruses. I am under a consultant at the hospital and also a severe asthma unit. I have been diagnosed VCD and dysfunctional breathing but I am also very atopic and reacted to nearly everything on my allergy testing. I only was discharged from hospital on Monday and since I am on another five week tapering course of steroids the dreaded prednisolone. Feels like I have been off and on steroids for 7 months straight. In two weeks time I have a methocoline challenge test which is basically an induced asthma attack. I am super nervous about this and they said if I am unwell how am I now they will be unable to do it.

Also, I am on many different medications and inhalers and nothing seems to help. I at the moment don’t have a nebuliser at home but will talk to my gp about this going forward tomorrow as it feels like I can’t live a normal life. For the past two weeks I have been awoke in the night multiple times every night due to wheezing and coughing fits needing to take my inhaler. The wheezing and asthma attacks seem to occur daily even on 40mg of prednisolone at the moment I still feel tight and the symptoms are quite tiring and unbearable. My attacks can come on very fast and are very frightening.

My allergic hay fever and other symptoms are also quite bad right now and I know they go hand in hand.

Here are a list of medications I take:

Fostair 200/6 twice daily 2 puffs

Respimat inhaler once daily 2 puffs

Fexofenadine once daily 180mg

Montelukast once night 10mg

Avamys nasal spray twice daily 2 sprays

Sodium cromlicate eye drops twice daily 2 drops

And also my 40mg prednisolone.

I feel so poorly all of the time, the symptoms are hard to cope with and I feel exhausted and wheezy a lot of the time. Being in and out hospital is difficult and I have even lost my job because of this.

I am going to the gp tomorrow but I feel like there is nothing else they can do for me.

Anyone else a brittle asthmatic?

[Bluecat99]

Hi, I am also a brittle asthmatic with multiple visits to resus, ICU etc. It is really hard when the drs are saying there is very little else they can do. I feel my consultant is fire fighting atm, although things are slowly getting better. It may be worth asking your Dr to check your antibody levels if you keep getting infections, as the steroids prevent me from making any (I've been on them for about 18 months now straight, varying dose but never managed to get off them). I now have to infuse antibodies, but this is helping with the recurrent hospitalisations, and the gaps between are getting bigger. Beyond that, just rest. I've had to learn to slow down, and to prioritise, two things I was never very good at! If you have any questions, if be happy to answer if I can.

[Hidden in reply to Bluecat99]

Hi Bluecat. Thank you so much for your reply.

I am sorry to hear about your asthma being so rough for you it is a nightmare. It is hard to just rest etc when you are used to not having it lol x

[Hidden]

Regarding the allergy test did you have the skin prick test? As this is very unreliable, I have had that test twice and reacted to nearly everything but I am allergic to only a couple allergens.

There is an IgE blood test that is much more accurate.

[Hidden in reply to Hidden]

Hi, thank you for your reply

I have had both the skin prick test and Ige tests done. They both said the same things

[lillyofthevalley37]

Are you on the contraceptive pill as too much estrogen promotes allergies

[Hidden in reply to lillyofthevalley37]

Hi, thank you for your reply. I did not know this but yes I am on microgynon.

[hilary39]

I’ve also been in really bad flare for months on end and it culminated in a hospitalization for an adrenal insufficiency crisis last week due to having been on so much prednisone--it was super scary. My pulmonologist said it's the first adrenal crisis she's ever seen in her career of managing asthmatics :/

Has your doctor talked to you about a biologic treatment like Xolair or Nucala? I have severe allergic asthma so I just started Xolair (it targets igE to prevent histamine and mast cells from being released). I haven't noticed an improvement yet but it's only been one month and typically takes 4+ months to kick in. Nucala lowers the number of eosinophils in your blood which reduces inflammation. They are both lifelong drugs and you have to get injections once or twice a month depending on your situation but they are miracle drugs for some people.

I'm so sorry to hear about your misery and really do empathize!! Take good care and be gentle on yourself.

[Hidden in reply to hilary39]

Hi! Thank you so much for your response. Yes they have told me about these Injections and said I may end up having to have this treatment due to my allergies. Sorry to hear you are unwell. Hope you feel better soon. I am still taking prednisolone and will be for the next 2 months.

[Ree89]

Hi I’m on all the same medication as u my asthma not getting better I’m in and out of hospital every month and they keep me in for a lest 4/5 days I’ve got an appointment at guys for an injection to see if that gonna help I wake up can’t breathe then turns in to a big asthma attack it’s so scary and horrible I’ve nearly been itc 4 times hope u get your sorted x

[Echoblue]

Hi, sorry to hear you are struggling so much, it was fascinating reading your history as for so much of it, this was like reading my own! I am also on that merry go round at the moment with hospital every 2 weeks. Nebulising ipratropium and Salbutamol, but this only gives me around 2-3 hours relief. IV Magnesium sulphate gives me up to 2 weeks of reduced symptoms but no one knows why or how long they can keep giving me that so regularly. I think the hardest word you used there was “atypical” I hear that all the time ...... as if we choose not to tick the box of normal presentation!

I do hope you get some answers and easing of symptoms. Take care

[EdinburghLass1977]

I am also a brittle asthmatic with numerous hospital admissions. I am on Relvar Ellipta (higher dose inhaler) and Incruse Ellipta...and I hardly need to use my nebuliser at all. I’m also on theophylline and antihistamines but it was the change over to Relvar and Incruse that made a massive difference. I’ve been on Pulmicort, Becotide, becloforte, flixotide, seretide, spiriva...none of them have helped as much as Relvar and Incruse. Might be worth a try if you haven’t already tried them x

[su-mo]

Magnesium oil rubbed onto arms /legs/chest can help alleviate symptoms. Was chronic asthmatic for over 40 years no longer get chest infections since taking strong probiotic capsules and proteolyitc enzymes. Approaching 75th Birthday No Meds strict healthy diet plenty of fresh air & exercise. Do your own research nobody knows your body better than you!