Just wondering if anyone else has experienced the same and looking for some advice.
Last week I’d had three attacks in the space of a week that resulted in A&E treatment with salbutamol, atrovent, hydrocortisone, magnesium and pred tablets. I’ve had an attack free week and have finished the pred now and the ‘cold turkey’ has now set in. I’ve experienced it before after several bad attacks and lots of meds, when my body is med free, I get really tired, cold, achey and feel like I’m coming down with the flu. I know I’m sickening for anything as this happens every time I have several attacks. Just wondering if anyone else experiences this and how they deal with it as I feel like 💩
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RD23
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I got to the point a few years ago where I couldn't just stop steroids, even after a week, like they say you can/should. If I did I'd feel like you did and sometimes I ended up in hospital with it. Having to have them so often and then having to taper them then of course caused further issues (due to being on them so much) but I couldn't just stop them. Trying to get some doctors to get that is hard though. Most of mine were really good and just said if you can't, you can't. But others were just adamant that you can because that's how it should be 🙄
I’ll ask my specialist next time I get to see them. I usually have pred 8 a day for 5 days when I leave hospital but because I know I get like this, I try and step the last few days down gradually.
Yeah, I can see how it would cause issues as some doctors don’t like it if you deviate from the norm!
I was like that years ago. Eventually my GP said it was safer to stay on steroids rather than keep being rushed into hospital. I was on a maintenance dose of 12 and half mg, initially trying to titrate down in 1mg. Got to 10 and massive attacks started again. My maintenance dose has climbed over the years and now stands at 20mg but I do not present to hospital as the minute my chest starts to feel worse I nip it in the bud. If you need them you need them. Yes they have caused other problems (osteoporosis, muscle wastage, diabetes, compromised immune system to name a few) but I am alive
My immune levels were rubbish and I had many many admissions so they decided I'd be better off weaning off them. Many problems doing that but eventually got to 8mg and managed not to have them increased for 2 years when in hospital (we managed it in other ways). This summer they were increased and it was a nightmare reducing again so we stopped at 10mg. I'm not having them increased again unless there is absolutely no other choice. I do have a dose of IV hydro on admission and can do the occasional extra dose while in hosp. But having pred increased isn't the answer for me.
Ugh I know the feeling! We tried to wean me off pred because my immune levels are really low but only got as far as 20mg before running into problems 🙄
After a year of them being really low I’m getting a trial of replacement therapy for my immune system instead from immunology!
We keep trying to persuade them not to up the pred too much in hospital (my consultant only wants it upped to 30mg for 3 days) but that advice keeps getting ignored by the admitting teams!! 😒
Arghh. Glad you're getting the immune stuff though. A previous consultant suggested that to me but immunology decided they weren't bad enough. Good in a way but clearly something needed doing so something would have helped. My a&e are pretty good with my steroids. It is hard to explain why not when they ask. I don't mind explaining but in a&e I'm not usually in a position to be able to (especially when they do that "ask a question and only listen to some of the answer" thing. Or talk over you while you struggle to talk 🙄). Often they try to say that "you're not well, we need to...." No, my plan doesn't mean if I rock up here. It means if I'm kind of dying.
Yeah I had that for quite a long time with them, levels were low and I was getting bad infections but not at a point to concern them too much.
Then about a year ago my levels dropped further and they’ve all been stressing because they’re now “extremely low” 🙄 - apparently a lot lower than they normally drop with steroids so there could also be a primary deficiency going on (but it was never checked before going to the severe asthma clinic so 🤷♀️). But even with that it’s still taken another year of infections to get it approved!
Yeah I’m hoping to get my consultant to write a proper a&e treatment plan I can have on me rather than trying to explain the clinic/discharge letters they need to find on the system 😂 that takes a lot of breath!
Unfortunately after being on them on and off from 1967 to 1991 then 24/7 from 1991 have been told am on them for life. 20mg keeps me fine, have tried 19 and 18 but end up struggling to breathe so I don't rock the boat any more
You have been very poorly and you must simply give yourself time to recover. I always felt just ill for a good while - nothing very specific, just ill - but I got better in time, as I'm sure you will too. Give in to being an invalid for a bit.
Thank you. I think I’m just impatient and want to feel better quicker and people sort of expect that you have an attack and that’s it, you’re fixed! I also don’t get sick pay at work anymore as I’ve gone over my allowance 🙁
I had a really bad flare up 3 weeks ago ..spent two days in hospital I'm struggling to get back to normal same as you I wonder if it's all the meds they give you and a drip down then if pred ..my cough is still worst than normal hoping your well soon x
Sorry to hear you’re struggling too, hope you feel better soon. I tend to find the nebs make my cough worse as they dry everything out, honey in your tea can help soothe it though. Get well soon 😊
That’s how I feel after taking pred if I don’t taper slowly enough. I got tired of not sleeping and the emotional outbursts linked to pred and stopped far too soon once, and felt exactly as you describe. GP says I shouldn’t do, but I do, so prescribes enough for a slow taper now.
Hope you’re feeling brighter very soon. Rest it off, and hydrate well.
Ahh, good old pred head!! 😂 I’ve been asked why I’m so quiet this week at work and have had to explain that due to all the meds I’m likely to burst into tears or snap someone’s head off and it’s pot luck which reaction you get!
I’ll speak to my specialist or try and get in with my GP and see what they say.
I also found that after lots of pred, even after coming off being on it permanently I had to taper short courses - even though of course everyone told me I didn't need to!
Maybe not if you only have them every so often but I did, so I went ahead anyway. I would definitely listen to your body on this one and taper as much as you need to. Lots of courses I believe can make you somewhar steroid dependent as well as being on it permanently so you have to be careful with it and don't let them make you just stop the short course anyway - I listened to that once and it did not turn out well! I now take hydrocortisone low dose since pred doesn't tend to help my asthma (though still get some short courses) but need the cortisol. Btw if anyone wants to test your cortisol it should ideally be endocrinology and not a random cortisol test as they are often normal regardless (my asthma clinic referred me to endo who are great, but asthma clinic sometimes will just randomly test cortisol and say well it is normal...just leave it to the experts lol...and yes of course it is as I was on hydro and you did it randomly!)
Hope you feel better soon - 3 in a week is a lot, it took me ages to get over my last one like that and I was thinking this is silly it was 'just' A and E (but with all the meds...). I too find that I push myself to get back too soon because of work, even though my work is great and doesn't force me.
I’ll speak to my specialist or GP if I can’t get in and see what they say.
It’s just frustrating, as if the asthma attacks aren’t bad enough, it’s then the side effects of the meds.
Work are really good and supportive but I’m the only person who does my role, I’m a one woman team! That just puts the pressure on to get better sooner but I’m taking a new approach this time as I feel really rough, so I’m taking it a day at a time and doing what I need to. If I’m not well enough, then tough basically!
LysistrataAdministratorCommunity Ambassador in reply to RD23
Yes I feel the same - I do have more people who can technically do it, but often I'm the only one who really knows the projects well so I can pressure myself that 'I need to get back and work on xyz', especially when briefing will be even more complex than doing the work and my brain can't handle it. Problem is I do awful work in that state and often don't see that so it's not ideal in any way to push myself back.
You’re probably the same as me where you don’t like to feel like your asthma holds you back. It’s definitely a difficult balance between being sensible and not letting it stop you from doing things.
Yes just finished a dose of 80+ Oral steroids and taking 1000 mg of seretide a day, spoke to a specialist due to having chest infections at least once a month, I was told that I need to reduce the steroids, really with a min of 5 days 8 x 5mg. The bottom line I am having difficulty walking due to my knees killing me. Catch twenty two walk or breath?
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