Brittle asthmatic struggling

[Brittleasthmatic]

Hi

I have had a rough year since my asthma has turned brittle In jan 2018. I take fostair 200/6, spiriva respimat, fexofenadine, montelukast, salbutamol when required, lanzoprazol, sertraline and avamys nasal spray and eye drops. I have had over 15 hospital admissions a week at a time, and many more a n e trips and emergency gp/ out of hours visits ect. I have been on prednisolone for 3 months and meant to be weaning from 40mg minus 5mg per week next week 35 ect. I am supposed to be having a methocoline test on Monday and stopping all meds in preparation for this on Friday but I cannot stop taking the steroids and I doubt they can do the test whilst I am on steroids... I also have a consultant appointment Tuesday. I have been trying for 3 weeks to call severe asthma unit about my steroids and the test and they never answer or ring back so I will just have to go and explain. My asthma is debilitating daily waking me up every night and all the gp does is say increase prednisolone. The next steps may be zolair injections ect but it feels like everything is a waiting game and feeling so poorly all the time is difficult and exhausting. I also have diagnosed VCD and dysfunctional breathing and having physio for this and do daily physio at home to try and sort it. I have many allergies and severe hay fever. I am just looking for some support to see if anyone else has had similar and if there is anything I can do or say to my consultant to try and help me get some quality of life back. I have had asthma since I was a child but only bothered me in this severe brittle form since last year and they don’t know why.

At the moment I am wheezy, taking salbutamol 2 hourly and I know this isn’t good. I cannot seem to stop coughing and feel like I can’t talk / need to constantly swallow like there is so much mucus in my mouth/throat ? Never had that before don’t know what it is.

I am just looking for some support this is my first post on here.

Thankyou

[Echoblue]

I am so sorry to hear of the awful time you are having and can fully relate as am an allergy/virus triggered brittle asthmatic!

I wish I had the answers for you but I am also caught up in the minefield of waiting game and chasing to try and get answers. Do you have a nebuliser at home? I have found that has saved me from hospital on more than one occasion as I can just start it when things are going downhill. I bought one and GP prescribes Salbutamol and Ipratropium nebules.

Beauty is you are totally in control and can use it regularly when you need it, with the aim of getting things back in control quickly. I have usually found that even with admissions it is extremely hit and miss as to when you get your 2 or 4 hourly nebs. I don’t think I have ever received them even close to it!

It was agreed with my GP that any time I had to start a new treatment with it I would let him know and they knew I would be sensible and not push things too far, but having that element of control back in my hands has been great ....... though sadly still no total answers!!

Waiting for Severe & Brittle asthma unit appointment, immunology appointment and Respiratory Consultant appt currently!! (One of which has an 18 week wait before they have to respond ☹️).

I wish you well and wish I could give you all the answers you are seeking, but what I can offer is support and comfort that you are absolutely not alone and that you are not being singled out for the waiting game - it is available to all 😉 x

[Brittleasthmatic in reply to Echoblue]

Hi!

So sorry to hear you are going through a similar experience. No, I don’t have a nebuliser at home but I do believe this would be helpful. I have asked about this before and been told if I’m needing nebs I should be in hospital ect. But it would save many a n e trips ect if I had one to use at home, I think it is great you have a home neb and I think I’d be the same with using it responsibly before I get too bad.

My gp wouldn’t prescribe it without my consultant saying so first and allowing a home neb so will ask about this in my appointments next week x

Thankyou for replying

[Echoblue in reply to Brittleasthmatic]

You have nothing to lose by at least asking the question.

My GP isn’t happy about putting the nebs on a repeat which I am fine about as I can go many months without needing it. I just keep a few in and as soon as I use any I touch base with my GP. This is where it helps to get to know one GP as I am so atypical with my asthma (Brittle and silent!)I am very lucky with a supportive GP and I have had significantly less admissions as a result.

I do always get checked out if I am sliding though and also use a peak flow app which shows my readings in a colour coded graph and stores relationships between meds and peak flow.

I am hoping this information taken over the past 6 months may help when I finally get to see the specialists! I was last in a non stop 6 month Brittle state like this 9 years ago so all my regular appts with the specialists have all been discharged from as “cured” 🙄🤪 had to start the whole process of referrals again!

More & more I appreciate that tangible information is key when dealing with clinicians!

[Brittleasthmatic in reply to Echoblue]

Ah that is wonderful to hear and I’m happy your having less admissions.

I also monitor my peak flows morning and night in a peak flow diary and do find this useful x

[Echoblue in reply to Brittleasthmatic]

Good luck with your tests on Monday. I hope you can have them and that you get some answers x

[Brittleasthmatic in reply to Echoblue]

Thankyou so much I will update on Monday what happens xx

[Krcz]

Hi. My daughter has asthma, luckily not bad one at the moment. But as a mother I had a look into as to how could I improve her asthma if it was to get worse. I come across a supplement called pycnogenol from pharmanord. It's good for so many things, and one of them is asthma as well. Read about it a lot and seem to be helping ppl with asthma. I would give it a go, but if you would decide to try this please dont fall into a trap of trying to get cheaper versions of this. Pharmanord has the best a and purest form of it. Hope you get better soon

[17Rose]

Hi, I'm sorry to hear you are struggling and do much and it is difficult to not let it get you down isn't it? It sounds like we have very similar asthma as I've had 14 admissions in last year and many A&E visits which would have been higher if not for my home nebuliser. The hospital/ GP prescribe the salbutamol and Ipratropium nebules and I bought the nebuliser machine and I also have a portable one to take out with me. I don't really see my GP for my asthma, except for a catch up, as they prefer me to come to directly to hospital.

Because my asthma doesn't usually present with a wheeze or cough ( my chest goes very tight and silent) and I oxygenate well to start with, my local consultant gave me a laminated care plan explaining this and telling new A&E and medical staff how I should be treated. This has helped a lot ( with the odd exception!)

It seems I don't have vcd ( still.underninvestigation) but definitely have dysfunctional breathing. I have not been under 20 mg of steroids in nearly 4 years. And on all the other drugs. I tried Xolair injections but they didn't work for me and although under a severe asthma unit I don't qualify for the new drugs as my eosinophilic count is not high enough.

I do sympathise with the mucous in your throat and the not being able to talk and even after you have taken your salbutamol you get to the point where you are waiting for the symptoms to worsen again aren't you.

I would urge you to get your local consultant to prescribe nebules as it will help you feel you have a lot more control , and may reduce the need for s few of the A&E visits. Also a written care plan ( if you don't already have one) will also give you more control.

Thinking of you and hoping you get some further help soon. You are not alone!!

[Brittleasthmatic]

Hello.

Thank you for all your replies

I had to go to ane last night for nebulisers for some relief was really rough.

Back up to 40MG prednisolone again so have to start my wean all over again. Been so exhausted and coughing all morning, bArely slept.

I have my Appointments on monday on Tuesday.

[Brittleasthmatic]

Back in ane again tonight, being kept in overnight. Had to have back to back nebulisers and hopefully my consultant who I was supposed to have the appointment with today can come to me. I am so frightened this will delay getting my treatment sorted sooner, feel like I don’t want to carry on like this.

[Tysum773 in reply to Brittleasthmatic]

Hello,

My name is Tyrone I am a 25 year old severe / brittle asthmatic.

I've spent a lot of my life in HDU/ITU/ICU.

I have a home nebulizer and I take fostair 200/6, spiriva respimat and salbutamol and montelukast.

I'm currently admitted on a respiratory ward at the moment, it's been six months since my last admission for ashtma.

Keep going and don't give up you'll find new ways of coping and dealing with things as they come and go

Stay strong.

[Brittleasthmatic in reply to Tysum773]

Thank you so much for your reply. Sorry to hear you’re unwell it is horrible being stuck in hospital. I wish you all the best and a speedy recovery.

My consultant has put me on new tablets - theophylline twice daily and I am going to be having a home nebuliser trial just got to wait for the appointment to get it. Also, I am being referred for zolair injections. If none of this can keep it at bay there are talks of bronchial thermoplasty being done.