Hi new to this community

[meganoscar123]

Hi to everyone who posts here, I am looking to hear from others coping with difficult asthma. I am a 48 year old who grew out of childhood asthma, then having been previously very healthy I caught whooping cough 4 years ago. 4 months of severe illness followed by my asthma returning with frequent bouts of bronchitis, trips to resus now progressing to difficult asthma despite being on the max dose of Symbicort 400, Montelukast and regular use of the drug I love to hate Prednisolone! (my husband says it keeps me alive so I know I have to just suck it up...but hey the side effects are truly pants!) I have high blood pressure controlled by 3 meds plus osteopina from the steroids. I have to be on regular antibiotics (doxycycline) for every cough and cold and am having penicillin challenge testing to see if I am still allergic as this is few left I can take for chest infections. I am looked after really well at The Brompton but this winter I've noticed my asthma has been much more unstable even on Pred. My consultant is brilliant, always contactable by email, sees me at short notice and is seeing me again in 3 weeks. He is hoping it is a blip...I am not so sure?? Any support/thoughts/experiences would be most welcome...you all seem a great group. Also does anyone get a strange feeling come over them when they are coming down with something where suddenly you feel like a sledgehammer has hit you...I always then get an asthma attack...not sure why?

[sassy59]

Just want to say welcome meganoscar and l hope someone will be along soon to offer support and advice. You have come to the right place. Xxx

[meganoscar123 in reply to sassy59]

Hi sassy59 thank you for your warm welcome, I hope you have had a good weekend. I see that you are a carer for your husband, you do a wonderful job, the support of loved ones means everything for those of us living with a lung condition with all that entails.

Xx

[Hidden]

Hi nice to meet you and welcome to the site. I have asthma along with copd but fortunately for me is nowhere near as severe as yours sounds.

Don't know if you are aware but there is also an asthma site on here as well. x

[meganoscar123 in reply to Hidden]

Hi coughalot2 thanks so much for your reply, I did not realise there was an asthma site too, I will have to find my way around to explore. I was not aware until my consultant told me (and Dr in resus) that there are no other meds to add which can help - seems I have got to the max of everything so only Prednisolone can be factored in and I have to be on for 3 wks after an attack with further 3 weeks of tapering down, not the 7 days G.P's tell you. How do you manage with copd as well as asthma that sounds very challenging.

[knitter]

Hi meganstar, I have COPD / Brittle asthma and I have three adult asthmatic daughters. My condition is only kept under control with oral steroids too, but my daughters manage theirs with inhalers.

I volunteered to pay for them to go on a Buteyko Breathing course, as I found it helpful on the past.....but I have so many chest infections my asthma didn't respond well to it.

Most Buteyko courses are very expensive and you have to trust the practioner....my eldest daughter has found one in London that seems very good and did not ask for the money up front. We will see how it goes....there are CDs and books available too.

Sorry megan ..I wrote your name incorrectly ....blame predictive text.

[meganoscar123 in reply to knitter]

Hi knitter many thanks for your reply, can I ask you a question? Was your COPD caused by the brittle asthma or a separate condition? I do worry that is my asthma gets more unstable even on oral steroids could this lead to COPD.

Also thank you for the info about the Buteyko Breathing course which I have heard can be very effective but I have chronic rhinitis since catching whooping cough so my nose is always blocked and wet (the consultant scopes it every visit to Brompton then sighs when he sees the state of it says no improvement and keep using Dymista combined steroid and antihistamine nasal spray)

I'm so glad your daughter has found a practitioner she trusts and can make good progress to better breathing. x

[juzwundering]

Hello there meganoscar! You will find good advice and lots of support here. It's easy to bore your friends and family with an illness, so sharing with others that understand your issues is such a relief.

When I tried to explain to my mother-law-law about my labored breathing at a large family gathering, she promptly sprayed me down with a smelly, chemical-laden, germ-fighting concoction from a can that nearly killed me! And all I said is that I really could not be getting sick, as some of the people present had recently been ill with some kind of nasty flu-bug.

So now I just keep it to myself. When I feel bad, there's all these interesting people here that understand. And, you'll realize that we're all in this together and everyone has their struggles.

You hang in there,

best wishes,

Gail

[meganoscar123 in reply to juzwundering]

Hello Gail, Thanks so much for your reply, OMG being sprayed with a chemical laden hideous germ-busting spray takes the biscuit! That along with anything like household sprays/room fresher makes me wheeze like mad so like you I avoid like the plague. I feel I am pretty positive about managing my asthma and also have a dogged determined streak not to allow it to define me but it is good to hear the things you all do on this site to get through the times when you are not great (In Autumn and winter for me and when hayfever season kicks in...so pretty much all year)

Today I started off feeling wheezy as I am decreasing my prednisolone but on the whole a good day, that's how I see it now one day at a time!

Thank you for making me feel welcome x

[pattylusk]

I tell everyone if I can smell it then it is bad for me. You might have to say that also/ Good luck.

[meganoscar123 in reply to pattylusk]

Hi pattylusk yes I've learnt sprays and air fresheners are a no no but also bunches of flowers or pot plants in a confined space are a nightmare...their spores start me coughing like a train!

[Phil40]

Hi, welcome to the forum. I come on here as I care for Mama who is the lucky one of the two of us as she has the COPD. There is always someone here who will know the answer to any COPD question that can be asked.

Obviously, being a COPD SITE, people do not necessarily have the answer to every random question in the world such as ‘ is the world a figurative construction created in my head and I am the only truly sentient being in existence and if so why is my imagination so limited and really dull?’

Definitely answers for COPD stuff though.

And if anyone can help me with that other thing regarding my existential crisis I am in the middle of that would be good too......phew it’s passed.

I just think of Scarlett Johansson and everything is ok again 😁😊

Happy Friday and if anyone knows Scarlett Johansson please introduce me to her,

I am not mad you know.

Don’t tell her that bit. Sounds mad.