What to expect from steroids?

Hi Sue,

I meant following the 5 days of high dose steroids - week two feeling better, then week three awful mega fatigue.

With me it always happens.

I’ve also had this with the 3 day IV steroids.

These days I avoid steroids altogether - 6 weeks of bedrest and a good book!

Fay

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Yes - 5 days at 500mg a day.

Very pleased so far but a bit nervous about the post-steroid crash, I’ve not been given a taper or anything…

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I will get plenty of bananas and apricots in!

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I don’t blame you in the slightest for avoiding the little devils then. I’ve always found that within a few days of the last tabs, I’m over side effects. Not that the beggars have always worked (in fact I’m generally an advocate of IV if they’re available). I doubt I’ll be having any more though, unless my MS decides to have one last roll of the relapse dice.

Sue

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Angela - try a banana milk shake three times a day!

And yes, Sue I also preferred 3 day IV. I suppose it’s too costly.

My general point is - our bodies can deal with the inflammation - in time.

I’m in no great rush these days.

However in the past, in 2011, I had made great plans to meet a visitor to the UK. I had invited a professor

from MIT to give a talk to MPs in Westminster. I just had to be there, on time 12.30pm, and take him to meet some MPs, and

give his presentation in the House of Commons. About 150 had booked seats. So - no way could I skip this meeting.

[I used to enjoy organising events. And planning and so on.,… ] Anyway…

Of course, two days before this my relapse started, so a steroid quick fix was my only option - without them - and

their power to raise Lazarus - the day would have been a total disaster.

So steroids are perhaps just for busy people, rather than offering a real health benefit.

Fay

PS. Can you ever plan anything with MS? Probably NOT! Too much stress.

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Yes maybe one day I will stop being in a hurry too! Just not ready to slow down quite yet…

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Oh blimey Fay, you and I are both cursed with the demon that is MS gone too far to let us be terribly useful in most areas of life. I am in awe of the way that you have grabbed hold of issues that are new to you (i.e. benefits) and helped so many people.

Sue

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Cram in as much as possible.

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They don’t usually bother with taper these days unless there is a particular reason. When I was first dx nearly 20 years ago, steroids were still being doled out in tiny white pills that you had to count out about 73 of to get the right dose (and even then it was a fraction of today’s high doses) and then gradually tapering down over days until you were counting out those wee white pills in your sleep. That carry-on is totally old-hat now. Short sharp mega-blast is in. 20 years on, it will probably be totally different again!

Glad to hear the steroids are getting to work.

Alison

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Day 5!

The steroid taste lingered all day yesterday despite being lower-key now that I’ve mastered the yoghurt trick. Particularly unpleasant after I suddenly realised what the taste reminds me of. Anyhoo I’ve washed down the pills & yoghurt with cheesy wotsits this morning and am cautiously optimistic about keeping that nasty flavour away. :slight_smile:

Apart from that and a (short-lived and possibly time-of-the-month related!) crazy rant to the long-suffering wife in late afternoon, still no real side effects, and my walking confidence is continuing to improve. Not much above a snail’s pace, but no longer having to cling like grim death to the furniture / walls / doorframes / cat etc just to stay upright when I totter to the bog and back :slight_smile:

Run out o pills now, bring on the crash!

I’m sure that Tiddles is very pleased about this. Don’t worry about ‘the crash’ - not everyone gets it. And in any case, some quiet downtime while the drugs let your body get to work repairing the damage would be no bad thing, whether enforced or chosen.

Alison

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Thank you Sue for your kind words re. my PIP research.

I’m just responding to the social injustice of the DWP,

and Mrs May’s rent seeking friends ATOS et al.,.

#End May in June!

#GE2017

Fay

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Just look forward to a nice restful weekend, when your sleep should be better. Not everyone gets a mood crash, but some do. Not everyone gets the feeling like all their muscles are bruised, but again some do. Keep resting, but also keeping up the walking round, stretching your muscles a bit. Just watch out for that cat.

What you can expect is that by tomorrow, your tastebuds should have come back to normal. No more horrible metallic taste. Although now I really wish I had a packet of cheesy watsits. Grrr.

Sue

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Wotsits were a temporary solution.

Currently Wrigleys double mint sugar free sweets are doing it for me. Hesitated on mints as I’m not usually a mint fan but these are a good choice! :slight_smile:

2 days after the steroids have finished. My walking is very much improving. Nasty taste has not gone but fading…

My heart rate still hasn’t settled either. According to my wrist-based heart monitor (not the most accurate but indicative!) it’s been 100+ bpm just sitting on the sofa - currently 112. Usually about 80. Pumping away and feeling rather anxious.

Angela the MS Trust has good info on MS symptoms. Worth reading.

Fay

Thanks.

I’m also struggling with foot drop this relapse. Had a trying day but anxiety levels dropping now and heart rate has settled down. Scoffing bananas and apricots, can’t remember why but I think someone (you?) said it was a good idea! Just need a good night’s sleep :slight_smile:

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4 days after steroids. Walking steadily improving :slight_smile: I can get about with a walker and have even left the house unaccompanied… Heart rate still rather high, mild mood swings, and I’ve had one or two funny-turns from overheating but (while still very far from “normal”) I must feeling myself again, I’m even thinking of going to the gym tomorrow…

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7 days after steroids. Walking still improving gradually and things generally going well.

Steroid taste faded gradually over several days rather than disappearing immediately but has been gone for a couple of days now. Phew! I can drink plain water again :slight_smile: Scoffing apricots and bananas to keep up my potassium levels (knew there was a reason…)

Still having the odd mood swing where I fly off the handle very suddenly for very little provocation.

Still have elevated heart rate. But less so - earlier in the week it was rarely less than 100bpm if I wasn’t actually asleep, and often in the range 110-130 (!) whereas right now its sitting in the low 90s and only goes >100 when I get up and move around.

Still sleeping poorly. But less so, and forgetting amitriptyline doesn’t seem to make it much worse.

All the above I can suffer gladly for the sake of mobility improvements so no regrets :slight_smile: :slight_smile:

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Hi Angela

That all sounds relatively positive. I’m glad your mobility is still improving and that you’ve found it to be worthwhile despite the side effects.

Hopefully you’ll now be able to build on the walking improvement.

Thanks for letting us all know of your progress.

Sue

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