I’ve been extremely fatigued and just no energy to function what so ever..and a real feeling of weakness. I’ve had some palpitations too and I’ve never experienced this..even when taking too much ventolin!
I had suspected tonsillitis beginning Nov so was given 10day course of penicillin. Was still feeling rubbish and asthma started to flare 5days after finishing and so GP put me on a course of clarithromycin for 7days😕
A few days after finishing my throat was still red roar..not sore though..but I could see whiteness on the roof of my mouth and the white spot on my tonsil still hasn’t gone..that’s been there 6weeks now!
Pharmacist said try daktorin as it’s probably thrush now after the antibiotics..a week on and still feeling so rubbish.
Back in touch with GP who has now given me Nystan liquid for a week. Really hoping it helps??
In the mix of of all this I’m trying to wean down on my prednisolone after being on higher doses for longer than I’ve been used to. Going from 20mg to 15mg is usually easy for me but I’m really struggling to do normal activities like going for a walk at the moment. Could that be another reason why I’m feeling so rubbish? Again I’ve never experienced withdrawal symptoms before.
I usually find a way to keep positive about it all but I’m really lost as to what’s going on now..😔
I’ve never experienced oral thrush before so I’m just reaching out to know a little more and can it make me feel poorly like this.
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JustR
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Reducing pred can definitely cause the exhaustion, weakness, etc, and reducing them can be more problematic than doctors like to acknowledge (especially if you've been on them a long time or very frequently). I don't know about the thrush but pred can definitely do that.
I’ve been thinking could it be the reduction in pred as my symptoms of fatigue and the rest started at the same time but the trouble with my throat and now possible thrush has been lingering too?
Have you experienced being on higher doses for longer than your used to and then struggled to wean down and the side effects?
My GP is way out of her depth now..says it’s could be a range of things from chronic fatigue to anxiety🙄such a waste of a call..when mentioning the steroid situation her answer is well you need to come off them to avoid the side effects!
I’ve only been trying to do this for the last 2years!
Yes I've had big problems coming off steroids. I was on yoyoing doses of 15-40mg constantly for a couple of years and prior to that had had 5-7 day courses every couple of months. So my body hates any reduction. I often had to do slower longer weans, so instead of say 5mg drop every 5 days (of whatever one "should" do), it was 5mg a week (or longer) to 15mg and then smaller drops beyond that, or monthly drops. It's varied over the years! Other people I know find alternate days works to bridge a new gap. Eg. 20mg 15mg on alternate days for a week, then presumably 15mg every day after that for a week. But it kind needs your GP to support it so you have enough pred to play with it. Also when you're used to doing it it's very different to finding your own way which is maybe less sensible.
Do you have an asthma nurse you could speak to? Or maybe try the AUK nurses? (0300 2225800 M-F 9-5) They will be able to advise on steroid weans.
Thanks for sharing...I’ve never struggled getting to 10mg..in the last two years I’ve just never managed to wean less than 10mg..this has felt really hard just moving 5mg every 2/3weeks at the moment.
I’ve tried alternate days and it’s sometimes worked. I’ve left a message for my consultant to have a chat as unfortunately my GP really doesn’t know what to recommend anymore..she’s been supportive but kind of holds her hands up and says I don’t know what more to suggest🙈
Sometimes that is a good thing (like I'd rather they did that than made it up....or blamed anxiety!!) but equally it doesn't help you right now. Hopefully your consultant will phone you and give you some advice. Our bodies can find the drops much harder than they should do - if those in charge accept that then it's easier. When they don't it's even harder as they sort of say well you just have to ride it out/it's for the best. But they're not living it! 1mg drops at a time might be an option/something to float to your consultant?
Sorry just read this one maybe we have same gp... her response its either anxiety or viral 🤦♀️ nope try again love 🥴. As twinkly said they don't appreciate how hard it is coming of these awful meds don't get me wrong they're great when they work but when it's time to come off or change omg... I have a whole new understanding of side effects now.
Oral thrush is horrendous and can make you feel just yuk also can go right through you so I would take oral tablet too but check with gp first. Coming off prednisolone definitely makes you yuk too I'm definitely having withdrawal been on 40mg for 10 months then in 5 weeksI've weaned down to 5mg I feel crap! Con instructed me to do so as couldn't get past 25mg (yea makes sense..) it's because side affects were out weighing pros in end. (For me not everyone) Now got 2nd bloods next week as possible AI 🥴.
Also tongue starting to feel sore again you just become very run down when in withdrawal (never thought I'd hear myself say that when was working with substance misuse 🤦♀️😆.
Oh wow..you’ve done well to wean from 40 to 10 in 5weeks👏
I’ve been trying really hard but I may have had covid mid oct..and I’ve just struggled since😕
I’ve never struggled to wean down to 10mg after a flare..but I’m just stuck with these symptoms at the moment.
I’ve been referred to endocrinology and have a call with them next week..I’m hoping they can help me further as it just feels like no one wants to listen🙈
Yea I'd never struggled coming off prednisolone before either, but also pretty sure I had covid feb and since then asthma been terrible and not able to come of prednisolone. But yea 5mg now my body went into shock I reckon doing it so quick but starting to see benefits. 🙂
I don't know about the coming off steroids but I had a double course of antiniotics and that combined with the inhaled steroids has given me oral thrush. The nystatin has got rid of the white plagues on my throat and tongue but when they come off they can bleed and leave red raw patches so now whilst the thrush seems to have gone, my throat is still red and raging. Felt pretty wiped out at the height of it,
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