Needing a little bit of support right now

[Kimmy132]

I have been having a terrible 5 weeks, i have severe brittle allergic asthma - current treatment Relvar Spiriva 184mcg/22mcg, Spiriva respimat, Montleukast, Fexofenadine 180mg, Ventolin. Omaluzimab 4 weekly. Just wanted to know if anyone has experienced massive flares with their asthma when having surgery. I had emergency appendectomy 5 weeks ago and did well with asthma with GA, took a little while to get my sats to settle after the op but all in all went well. Unfortunately i ended up with wound infections and then had a CT with contrast which i had a reaction to which caused massive asthma attack and since this I've not been able to get the very fine balance of my asthma back to where it was, i was in hospital for over a week after the reaction and then discharged with neb wean in the community. Been on high dose steroids for 4 weeks now and as soon as got down to 10mg a day i then started to flare again and ended up back in hospital for another 4 days so now on a weaning dose of dropping 10mg every 5 days. I just feel rubbish and don't seem to have it under control not sure if it is due to the stress my body has been under, has anyone had this kind of experience???

[Echoblue]

Hi, I do have Brittle allergic asthma but can’t comment with experience on post surgical issues. Have you talked to the asthma support nurses from Asthma UK as they may well have some knowledge on that aspect?

I can however offer you a big hug and send you best wishes for a speedy settle of your asthma symptoms x

[Kimmy132 in reply to Echoblue]

Thanks hun, just really am feeling fed up. Generally since Biologic treatment my asthma has been better controlled but the amount of exacerbations have crept up, but since this event it is like a wild animal!!! Saw my specialist yesterday who said I’ve just got to ride it out. Easily said than done also stressing as been off work for past 5 weeks and due back in about 2.5 weeks.

[Echoblue in reply to Kimmy132]

I so get your frustration! Mine has been out of control since December and had to have 7 weeks off work earlier in the year, tried to go back on reduced hours, kept trying to limp on with continued flare ups and all went completely skewed again and been off 3 weeks now, due back in 1 week, but just had 2nd A&E visit in just over a week, then admission, where it also kicked off again during the admission.

I had a 6 month period of total chaotic asthma 9 years ago and it suddenly settled for those 9 years, but 7 months so far is not funny!

All I can suggest is try & track down if you are doing/ have anything different going on in the house that may be continuing to trigger it though I suspect this is more likely just your body taking some time to readjust since it has been a horrendous year for allergy sufferers this year.

It may be that you and I won’t ever get full answers so it is key we try to keep our chins up, however much of a battle that is. Having a moan on here is a “safe” environment with people who fully understand the frustrations of the situation so don’t be sacred to let it out here!

What we do have is hope, hope that it will settle (mine did before and I am banking on it doing that again) and I so hope your does too ...... and definitely sooner rather than later 🙌🏻🤞🏻👍🏻 Pam x

[Kimmy132 in reply to Echoblue]

I know I’ve had asthma since a child on and off, as soon as I got into my mid twenties has been a decline. Started biological treatment and first 2 years worked fab and now not as well, had my monthly dose yesterday so hoping will give my body helping hand, dropping down on steroids today which am nervous about as did that last week and ended up back in! Have had 3 hospital admissions in 5 weeks when I went in for emergency appendectomy. If you don’t mind me asking what meds are u on for ur asthma? X

[Echoblue in reply to Kimmy132]

I take Fostair, Montelukast, nebulised Ipratropium & Salbutamol, fexofenadine and currently also on hydrocortisone (and the obligatory omeprazole!) I am steroid resistant hence why not on prednisolone so they are just trying hydrocortisone to see if that makes any difference after this last bout. Been through gammet of various preventers over the years without great success. Have gone through Xolair which worked for a while for me but they decided it probably wasn’t doing so and stopped that a number of years ago now. The only thing that works for me in a flare up is IV Magnesium sulphate (had to have 2 in 12 hours this week 😩)

Severe & Brittle asthma unit in Birmingham are prescribing me nebulised Magnesium sulphate which worked really well for me 9 years ago and a month of that seemed to settle everything for this extended period (or maybe it was chance timing but at the time I didn’t care) now I wish they had got to the bottom of what was going on then!

I chased up the nurse specialist for a date for it yesterday and am starting it Aug 5th 🎉. She was telling me that it is a very small cohort of patients that respond to the nebulised version but where they do, it is extremely effective and risks are significantly lower than having regular IV!! Local hospitals have never even heard of this option as it is rarely used so only a few specialist centres access it.

It is all about finding what works for your body, which is definitely far easier said than done!

How I wish we had a personal needs printout facility!! 😉 x

[strongmouse]

Sounds like your body has undergone a massive onslaught! Emergency surgery usually means your body is already under stress, coupled with your asthma and then reactione to the CT scan dye AND an infection is a lot to cope with. I'm not surprised it is taking you some time to feel well.

So take care of yourself. Eat well, drink lots of fluids, and rest. Try not to worry about work at the moment - know that is easier said than done! Your most important task at the moment is to look after your body. We live in a society which loves 'instant' but our bodies don't do instant when they are unwell.

Hope that it isn't too long before you are back to being at a good level again. x

[Saassii]

You say allergic asthma, you've said your meds and clearly a chemical exposure during surgery has contributed. But you don't say what you're allergic to? My assumption is it's something regularly in your environment or you wouldn't be having ongoing regular and increasing exacerbations. Are there any signs of mold or water damage in your home or workplace that could be aggravating and exacerbating the other factors?

[Kimmy132 in reply to Saassii]

No water damage or mould anywhere. My allergens are cats, dogs, dustmite, perrineal pollen. Cigarette smoke, sprays of perfume etc can trigger me as well. Weather change of hot to cold or prior to storms

[Saassii in reply to Kimmy132]

I'm glad if your environment is critically clean, people with this type of asthma certainly don't do well with any type of microbe into their already overburdened systems. Try not to be a cleaner yourself either unless you wear a respirator. Sometimes what we think of as normal and just take up cleaning it, is actually where a large exposure comes from that makes matters worse and that can be lasting.

[Anniecath]

Hi Kimmy, sorry you're having such a tough time. I do not have brittle asthma and have never had any post operative issues. I have been asthmatic since a baby (am now 65) and my treatment is Qvar inhaler, Serevent inhaler and Montelucast tablets with Ventolin inhaler as a rescue inhaler. I don't know if this has any bearing on your case but I have been suffering really bad hayfever this year which in turn exacerbates the asthma, so I am taking antihistamine tablets as well as beconase and eye drops Try and get back to your specialist and see what they can do to help you. The stress alone could be causing flare ups. Hope you get on top of things and be gentle with yourself.