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Advice please

Ghoulette profile image
9 Replies

Hiya

I'm after some advice please. I am struggling with managing my symptoms currently (brittle asthma). I am awaiting a revisit appt with my consultant and my GP has said there is nothing more they can do for me (they have written to hospital to expedite appt).

I am on fostair 200/6, spiriva respimat, montelukast 10mg, fexo 180mg, omeprazole 20mg. I am also taking ventolin via spacer and nebuliser (between 2 and 4 nebs a day currently just to try and manage tight chest). I have just finished a course of amoxicillin 500mg tds and am still on 40mg pred daily.

My problem is that my chest is permanently tight and breathing is hard work. I am wheezy on and off and get SOB if I've hoovered, or like today, put the recycling out. I feel like I'm breathing through a straw and that bloody elephant is sat right in the middle of my chest. I've had to have time off work again and they were very close to calling an ambulance for me on Tues as my chest was just getting tighter and tighter. Eventually it eased a little but it is still tight. My pf is fine (lowest 400 so far but have been blowing 400-500) but it doesn't always change much anyway.

Hubby and I are travelling to London tomorrow for 4 days break. I'm taking my nebuliser with me but I'm a bit worried about how I'll be down there.

I'm not sure at what point I should seek hospital help? Even just sitting here now, my chest is tight and breathing hard work, but I'm not SOB and I'm not wheezy. My resp rate is fine and pulse is ok. I'm going to have a 2nd neb in the hope it eases a little.

Any advice please?

Thank you x

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Minushabens profile image
Minushabens

Hi there. In the short-term, I think if you feel like you need help you should ask for it. Don’t ever take risks.

Longer-term, I think it’s all about trying to get to the bottom of what might be causing the exacerbation. That could be any one of a multitude of causes & your consultant is certainly the best person to try to get to the bottom of that.

As for London, it depends I suppose on what your triggers or allergies are. I don’t go there too often but I don’t think the pollution is quite as bad as it was. Fingers crossed for you!

Ghoulette profile image
Ghoulette in reply to Minushabens

Thank you. I don't like to bother A+E if I don't have to......but I'm never quite sure if I have to be SOB, wheezing, tight and low SATS before attending in order not to waste their time 😏. You always see so many people up there who really should use another service like minor injuries or GP.

I'll just play it by ear and hubby will keep a close eye on me.

Minushabens profile image
Minushabens in reply to Ghoulette

My GP gives me the same lecture every time I see him-if I’m in a bad way, or even worried that I am, go straight to A&E or 999. He actually gets quite annoyed with me if he thinks I’ve waited to get an appointment with him. Nobody will ever blame you for making a genuine call, even if it turns out you’re ok. But if you should have done & don’t then you might not get another chance!

Junglechicken profile image
Junglechicken in reply to Minushabens

So true Minushabens. I worry about wasting medics time and thinking I’m I really not that bad. Have to admit that after my attack last Friday i didn’t want to get an emergency appointment with GP because I didn’t feel that bad. I did think there’s someone else out there who needed the appointment more than me. I also felt unreasonable about making a fuss with the receptionist at my surgery. Turns out I was putting myself at risk of another attack and needed pred. Also I was only going to get worse without treatment and a trip to A and E might have been needed. Putting things into perspective requesting 10mins of GP’s time doesn’t seem like a ridiculous thing to do if there’s any possibility that you could end up in hospital dangerously ill. When looking at it sensibility it’s the most responsible thing I could have done.

Kel8778 profile image
Kel8778

You are on the same meds as me at the min. I have also been prescribed theophylline and carbocisteine. If you are on a dose of 40mg of steroids until further notice then you should really be on calcium tablets as well. My specialist & respiratory team have said that an asthmatic should not use nebulisers at home as although this can open the airways, it can only open them so much. It could be you are using it to alleviate symptoms but in actual fact your lungs are as open as they are going to get. Asthma is eczema of the lungs so if you’re lungs are as open as they are going to get and the “fur” starts building up too much it can put you in a lot of danger. I am a severe asthmatic and there is no way my respiratory team or specialist would allow me to have a neb at home. My advice is get you GP to put in a recommendation that you see a consultant or specialist for your asthma to get it a bit more under control. To much nebs & blue inhaler can also cause tightness of the chest. i have been assessed lately for the zolair injection and should hopefully be getting this in 8 weeks. Try and push for answers to get your asthma under control. Wishing you a speedy recovery.

Ghoulette profile image
Ghoulette in reply to Kel8778

Thank you. I am under the severe asthma clinic at the hospital and just waiting on a revisit appt where hopefully my consultant will introduce theophylline/aminophylline. I bought my own nebuliser with the permission of my GP to try and minimise visits to A+E, but I understand what you are saying. I'll see what my consultant advises about using it.

I'm just unsure at what point I should go to A+E if I am not SOB, wheezy. I always think that if I can use the neb to stave off the attack, then it's better than keep going to A+E unneccessarily and wasting their time. My GP has said to me that if I have had 2 nebs and symptoms haven't improved, then I should attend A+E.

I guess it's still a big learning curve for me.

BatuoShaolin profile image
BatuoShaolin

Wow! Your PF 400! In 1971 when I came here to ostensibly seek my modest fortune, the first GP's visit, suffering Bronchial Asthma my PF was precisely 250. A constant GP attendance until 2009, my PF was not above the 250 reading. Nevertheless, I do not know if the PF reading typically reflects the category breathing problems one invariably suffers. But the GP's specific prescriptions must be adhered to and administer accordingly. The GP correctly, is traditionally the local expert.

In reasonably considering your 'worry' while in London, please do not dwell on the 'what if'. But with appropriate respect, I am not in your situation. Just undertake your pleasant London trip and keenly enjoy your extended weekend away. For I sincerely believe, when anyone dwells too much of the 'what and if', it invariably tends to become real.

I’ve been through this.

Mine did a 180–I hardly have any symptoms any more, just so wheezing so light I leave it alone and it resolves itself?

How? My allergist tested meds, very systematically, one at a time. Her LAST option was to replace Spiriva with Turdoza.

I am EXTREMELY lucky that I didn’t tolerate Spiriva or she probably wouldn’t have done it, but FOR ME it was a miracle.

I’m not specifically recommending this change for you. I’m not a doctor, and I’m not your doctor.

What I am suggesting is that you very systematically try substituting one Med for another. My allergist gave each new Med a 90 day trial.

Maybe there’s something on the pharmacist’s shelf right next to something that would work better—maybe, very much better.

I also didn’t see montelukast (brand name Singulair) on your list.

My allergist swears by it...and I swear by my allergist.

Hi. I've only just seen your post. Hope things are improving for you. Never put off going to A&E if you are short of breath. Everyone's asthma is different. I can only dream of a peak flow of 500 and I function really well until I get a chest infection. But that doesn't mean you shouldn't take your SOB seriously.

Apart from regular meds and checks my advice to you is try salt therapy. It really works for me. It soothes the tubes and help loosen mucus. Salt caves are really good if you can find one locally. (Although quite expensive)If not a salt pipe is something you can take everywhere with you. They are available on line from numerous outlets including Amazon and not too pricey. Good luck. I hope you are breathing well again soon x

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