PredHead & (ongoing)Flare🤯🤪🙈 - Asthma UK communi...

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PredHead & (ongoing)Flare🤯🤪🙈

KatieJ28
KatieJ28

Hi again👋🏻,

Hope you’re all well and not struggling too much with all of the winter sickness that’s around atm!!

Just looking for a little advice/your experiences on how to cope with the wonderous side effects of long term high dose pred as it looks like I’m going to be on 40+mg for at least another month and then when it comes to weaning it’ll be a 1mg every x amount of days down to 25 to start with as every 5mg drop seems to be landing me in resus atm😒

Currently riding an emotional rollercoaster and mainly struggling with crying over nothing/silly things (both good and bad) like my cat not sticking about to be stroked🐈, a mug of hotchoc going cold before managing to finish it🍫, being so tired I drop my PFM when trying to get a reading whilst feeling bad or having to call my spec team for advice😂😅 and ‘snapping’ at my family when they ask if I’m ok or why I’m being so annoying and negative🙄 (not trying to be-just exhausted, in pain and can’t breathe🙈)

I know in reality I am going to be back in for another long admission on IVs/O2 soon enough as it’s the only thing that seems to provide any stability atm and already crashing despite getting out of hosp the other day🐍🐘🤦🏻‍♀️

Any tips/advice will be greatly appreciated!😊

25 Replies
oldestnewest

So sorry to hear of the unfavourable rollercoaster 🎢 you are on. Feeling rubbish is enough to make anyone snappy and emotional, but as you say, when you add steroids into the melting pot as well! 🥺🤷🏼‍♀️🤯

I do hope it all comes back on an even keel again very soon for you.

Take care x

KatieJ28
KatieJ28
in reply to Echoblue

Yeah. Not a fun time😅 Thank you x hope you are well😊

The steroid rollercoaster is awful. You have my every sympathy. Do you have home oxygen? Maybe you're too much of a risk for it though? Sorry it's so rubbish for you. Have they tried the xolair-type things? Assume so or else you're not suitable but can't think of other ideas.

KatieJ28
KatieJ28
in reply to twinkly29

Thanks x no home O2 and waiting to see if eligible for a biologic atm so 🤞🏻

twinkly29
twinkly29
in reply to KatieJ28

I really hope you are eligible. That doesn't help you right now of course so hope you're managing ok.

I’m sure lots of us can identify with your situation. Is there any craft activity you can do? You can only read for a certain amount of time but if you have something you can do from time to time - knitting or card making, say, you get a sense of achievement which cheers you up wonderfully! Do what you can and be kind to yourself.

Thanks. Colouring/youtube does help to pass the time esp when stuck in hosp. Will try and take up something like knitting as used to do that but wasn’t v good😅

twinkly29
twinkly29
in reply to KatieJ28

I found the same with knitting but I totally took to crochet.

Steroids hit us all in so many ways. Whenever I'm on a higher dose, I just can't sleep & become even more of a grump than I normally am. I don't think there's really an obvious solution to some of this other than reminding yourself why it's happening, making sure your loved ones understand/let you off & doing the best you can to shift how you're thinking.

In our house, we sort of have cues with each other for the different things that set either of us off in a mood...rather than trying to tackle it all the time & having the pressure all on you, maybe get them just to smile & say something silly that shows they understand ('is that you talking or the pred' for example).

Thanks. Difficult with getting them to understand but worth a shot when home😅 Sounds like you’ve got a good system in place!

Hidden
Hidden

I am sorry to hear your plight I know that feeling. Stay strong and sit it out, just keep telling yourself these feelings will pass. Good luck, 2020 is very young, there are good times to look forward to.

KatieJ28
KatieJ28
in reply to Hidden

Thanks😊

Oh goodness I know that feeling well, I alternate between a weird euphoria and despair and tears. I cry so much when I'm on high doses (and rarely cry otherwise). It also weirdly impacts my memory and I struggle to remember basic things (like the code to enter our building once!!) The last time I was on the same amount as you, 40 mg for a few weeks straight, I binge watched four seasons of the same show and did a lot of menial things like getting finances in order, updating addresses (we moved recently) and so on.

I started Xolair in April and it's helping through I've still been on prednisone a few times since starting. Really hope you are eligible!

Take good care, sending a hug (and some tissues :) )

KatieJ28
KatieJ28
in reply to hilary39

Thanks. Lots of tears esp when it gets to the point of not being able to physically do anything and knowing that isn’t going to change for a while😅

Awful memory atm too so know exactly what you mean and it’s v frustrating!

Sounds like a good way to pass the time and I’m glad you are getting on with the xolair.

Thanks, you too😊

I was on 40mg pred for 9 months last year. Main thing I found was making sure you make sure you wean very gently (I ended up back in hospital several times when I came off too quickly and had attacks).

Pred is a nightmare if I’m honest. I gained 20kg over 9 months but honestly once their out of your system you’ll feel 100% better. If you just explain to everyone that it’s just temporary I found most people are very understanding. My boyfriend has had to deal with months of me crying over everything!

Hope you feel better soon!

KatieJ28
KatieJ28
in reply to apink

Been on high dose for pretty much all of 2019 and been told it’s gonna be a 1mg wean when we do start as any drop is meaning back to hosp atm/any contact with bad triggers too despite the 40😒😅

Me too on the weight gain front, v frustrating and can’t wait to get off the devil pills.

Thanks! Take care

Please look at medical medium true causes of asthma it’s very interesting

Sorry to read your roller coaster still. When I'm on pred I cry at anything and as for sleep that just becomes the wide awake club.

I do hope you get some help and resolution.

Thanks😊

Yes, me, too! When I have been on 40mg per day I can truly weep. I weep at such silly things I almost think it is funny while it is happening, like weeping at the weather report. My biggest concern just then is that my DH does not start to worry about my mental state, and I think he has got it. It is just a stage to get through. Luckily, I have not needed them for a while, thank goodness.

Very best to you! I really hope you get through it without needing to return to hospital, but if you do, then all the best for that as well. And hope you get those biological and that they work well for you.

KatieJ28
KatieJ28
in reply to Wheezycat

Can be anything that sets me off or nothing at all😅

Glad you haven’t needed them in a while and I hope that continues!

Thanks

Wheezycat
Wheezycat
in reply to KatieJ28

Yeah, so do I! It could be the wonders of Montelukast, or having managed to dodge people with lurgies, though the latter is near impossible, or both. But I don’t expect it to last. So for now I am lucky.

twinkly29
twinkly29
in reply to KatieJ28

My consultant said he's given up second guessing what might have caused it each time!

su-mo
su-mo
in reply to KatieJ28

Most Asthmatics seem to be deficient in Magnesium. The best way to absorb magnesium is through the skin and the best form to take is Magnesium Chloride. You can buy this for baths or footbaths if you cannot afford a large amount, and also apply lotion or oil to your body legs arms etc. THIS HAS HELPED ME A LOT over the last few years along with taking probiotics and proteolytic enzymes. Might be worth doing some research if you are finding it difficult to control your Asthma. After 45 years being chronic asthmatic on all the meds I am now virtually med free and no Asthma

So sorry for your situation. I always take zopiclone sleeping tablets when I’m on press now or I’m climbing the walls. I can’t say it cures the ‘roid rage ( I just snapped at my poor husband for leaving a tray on top of the bin when he loaded the dishwasher) but it helps a bit.

I also drink Kefir probiotic yogurt drink to improve my immunity. Take care x

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