Prednisolone every other day

[Erin001]

Hello, sorry to disturb you all again

Some of you may of seen some of my previous posts which was more of a rant than anything else apologies about that but for those who haven't

I've had quite a difficult winter with my brittle asthma where I've had quite a few asthma attacks and hospital admissions

My consultant has decided to put me on 10mg of pred every other day to see if that keeps me stable due to the fact when I'm on pred I'm stable

My other meds include: 250/10 flutiform, 2 puffs x a day, 150mg ranitidine x a day 10mg montelukast, 120mg fexofenadine

I guess this is more of an update than anything else but I was also wondering two things

1) Your experiences with daily/alternate days of pred (if you do this)

2) how do you all cope with such a difficult, challenging irritating illness what do you do to stop yourself going mad

Thx to those who have supported me during this difficult winter and to thx to those for your answers in advance

Hope your all well x

[emmasue]

I take a 5mg daily dose. When I need to increase my Symbicort for several days in a row, I increase the steroids to 40mg a day. It seems to work most of the time. Having that flexibility has put me in control and I have gone several months without serious incident.

As for not going mad, it is always difficult to be an active person forced into inactivity. I try to focus on things I can do. I like to cross stitch which I can do sitting fairly still. I feel like I am accomplishing something. It is worth a try finding a simple craft to do. x

[Erin001 in reply to emmasue]

Ok cool

I'm not that crafty but I see where your going

Thx for the info on pred how do you find the side effects ? E.g. Weight gain etc

(that's the thing I hate most about pred is the hunger and weight gain and the fact the tablet is horrible in taste especially if it doesn't go down the first time )

I'm not so frustrated now but I was frustrated while in hospital and every now and then I get annoyed because

the thing that's frustrating me is the that fact it's started rule my life

There are things I've had to cancel because it's too risky or I was in hospital because of it

Even though I'm allergic to dogs I always wanted to go to crufts the dog show cos I love dogs and the allergy is not bad

But we felt it was too risky to go so we've cancelled that and Saturday just gone we were meant to go out for breakfast with family luckily that can be rearranged and that's something I don't care too much about we still had to cancel it

I'm also a college student and have missed days off and even though they understood I was quite annoyed when I missed an assignment deadline due to being in hospital

And this year seems to be the most uncontrolled it has been

[emmasue in reply to Erin001]

I know the feeling. I have had asthma all my life. I remember once we were offered a cocker spaniel puppy. My parents said no because I would be ill. I cried something horrible. Then when I moved out they got my kid sister a Cocker. That still rankles a bit. I had to stop horse riding. My kids would love to have pets but I can't. It does hurt sometimes but there is nothing I can do.

As for predicting, someone recommended this book.

amazon.co.uk/gp/aw/d/028563...

Not sure, but it may help.

[shirl13 in reply to Erin001]

Do you have the enteric coated pred, easier on stomach and slip down well. I take maintenance dose of 20mg daily and have been on them constantly since 1991 (intermittently since 1967 before then). They have kept me alive, yes hate weight gain etc but you can't have everything. Also take phyllocontin, ranitidine, co-dydramol, tramadol, montelukast, atorvastating, losartan, amitriptyline, carbocisteine, lantus, novorapid, salbutamol, flixotide and atrovent (think that's it lol). With arthritis, osteoporosis and muscle wastage on top of asthma I'm never going to run marathons so try to keep brain occupied with puzzles and surveys. I find my chest goes worse if I cry so I always try to smile. Hope your health looks up as weather gets better. Take care.

[Erin001 in reply to shirl13]

No don't think I have enteric cared ones and I'm glad they've helped you and that is a load of meds your on as long as your well I guess that all that matters

Thx

[EmmaF91 Community Ambassador]

I’m on 10mg daily when I’m well, as as soon as I’m off of pred I seem to flare up... hoping this will change soon tho and that I’ll get of pred completely as a maintainence med!

When I’m admitted (for more than 1 day) I try to do anything to keep from going crazy (up to and including making ‘great escapes’ to the hospital shop a few times a day 😅). It’s when I’m not in hospital that I struggle keeping still and not overdoing it... typically I now try to revise, but if I have no brain it’s crap tv and YouTube time! I also knit/crochet/brain games/colour to keep my hands busy, and to have a ‘change’.

Hope you’re feeling better today, and that college went well for you (if you went in) x

[Erin001 in reply to EmmaF91]

Hi

I did go into college today and went well and I know why cos I'm on pred and some of the nebs must still be in my system and I'm doing my inhaler every few hrs to keep me going but I hope I'm going in the right direction to get better

And what gather a way of coping with this illness is mainly distraction

I want to be a nurse so love Medical things (I'm fed up of being the patient )

I'm quite busy with assignments anyway but when I was in the hospital and when out I was thinking what options have I got left to get under control and was thinking the worst things ever and going well if I can't walk without sats dropping or getting out of breath what options does that leave me with but I think that was more irrational thinking I'm now more awake and realised that I'm not that bad compared to others and this will resolve itself eventually

Thx for your input x

[EmmaF91 Community Ambassador in reply to Erin001]

We all go through bad blips when our asthma flares up... it’s a stressful situation, and the more it happens, the more depressed we can feel. Plus low o2 levels is not conductive to good brainwork! Just remember that there are people who understand, and that there are almost always different drugs to try if you can’t get control!

It sucks having to miss events, but I’m a strong believer in, ‘if one door shuts, another one will open, if that one shuts, crack open the window!’ If nothing else this experience has given you understanding of how a patient feels in/out of hospital, plus you’ll ace anything to do with asthma when you study it!

Keep positive, I’m glad college went well for you today x

[EmmaF91 Community Ambassador]

Pred info can be for on the info leaflet that comes with it or on any google search (patient.info (?) or drugs.org (?) are the best sites tho)... I seem to swing between staving and stuffed so either over or under eat if I’m not cautious about it! More worrisome is the more long term effects (diabetes, osteoporosis etc) that can occur if you’re on it for too long, so it may be worth asking for ‘preventative’ meds (I’m on vit d, alendonic acid and have also been on calcium tablets in the past).

Taste wise ‘white’ pred is horrible, however ask if you can have ‘red’ pred... it’s enteric coated (like ibuprofen so tastes like tini-tiny smarties 😅) and so protects your stomach a bit more. It’s more expensive tho so some GPs won’t prescribe it

Hope that helps x

[healthwish]

Do u hav ensinophilac asthma? Hope steriods help and if they do mayb ur gp will reduce the dosage in a few months.

[Erin001 in reply to healthwish]

I don't even know what ensinophilac asthma is can you explain what it is to me and what the difference is between that and normal asthma ??

I have brittle asthma I know that much

I think they will and the fact the warmer weather is coming which will help with my breathing too

Thx

[healthwish in reply to Erin001]

Eosinophilic asthma involves an inflammation of airways linked to a white blood cell (eosinophils). When I get flare up of asthma my eosinophils are raised. Gp found that maintenance steriods stop this. So I am well with this treatment. Ud get more information on google. Ask yoyr gp also. Hope u r well soon.

[Lysistrata Administrator Community Ambassador]

Is there a reason you can't take 5mg every day which I assume is the idea with 10mg every other day? When I was weaning off a long long course of pred last year very slowly, my asthma nurse hadn't realised you could get 2.5mg tablets so told me to take 5mg every other day. It didn't work at all - on the 0mg days I had very noticeable symptoms of low cortisol from adrenal suppression (which can happen after a while on pred). I had to go back and say I couldn't do this. When I was on 5mg pred while waiting for a test on my adrenal glands I would notice low cortisol by the evening.

That's not about the asthma side of course, but for me it seems that the pred doesn't really last that long so if I were doing that dose it would be like 10mg every other day and 0mg in between. I don't know how much that would actually help! Maybe ask them if you can try the 5mg every day if that is what they want.

Not sure I have any tips on how to manage annoying asthma...my strategy tends to be to pretend it's not happening which works *so* well...not lol given I need my inhaler a few times a day and it's pretty much always there! I make a joke out of it which helps me as I have a sick sense of humour but it is very frustrating to miss out and I do feel for you as a teenager - it was bad enough in my 20s. I will say that when I can do things I will make a point of doing them - before all this I might have thought meh can't be bothered but now I try to make the most of the good days. I have made some great friends through this forum (I was on here years ago and met people through it in real life) which helps as they get it and I also remember that I would never have met them if not for my lungs!

I think it also helps that I like to do things that don't need too much energy. I'm not crafty but love reading (how did people do hospital before the Kindle lol) and can keep in touch with people online which helps when I can't leave home.

[jabber]

Hi Erin, I'll try to keep this short. Many years ago (late 1970's I think), when I'd been on prednisolone daily for some years, a new to me consultant said the current thinking was to take double the dose every other day, the idea being that this helped prevent all the unpleasant side-effects.

So I started to take my preds on alternate days and didn't have any problems taking them that way. No withdrawal symptoms that I remember. I hope it works well for you too.

I've mentioned the alternate days idea before on the forum and someone said she'd also been told about it, but I've never heard it anywhere else. As your consultant has also suggested it perhaps it's an idea that's still being put forward for long term prednisolone use.

You are doing a great job of coping with your asthma. I really hope you do become a nurse. It so good being treated by someone who understands our symptoms.

Good luck, Jan