steroid fears , help for newbie

New diagnosis and before diagnosis
1

Hello there

I was diagnosed on Friday after 6 years of on and off symptoms .( pins and needles , balance problems , spacisity in legs and most embarrassing of late bladder problems ) Mri scan ( with contrast ) showed enough lesions that thankfully I,'ve escaped the dreaded L.P . Had a minor wobble ( and not just legs ) on Saturday but generally been cup half full since then . There are after all far worse things and treatments have moved on I know .

When Neurologist rang me with DX Fri he said hospital would ring 're medication beginning of week and MS nurse will be in touch . Got appointment with him again in few weeks. Saw g.p yesterday who contacted different Neuro ( mines on his hols this week ) and am now the proud owner of a pack of methylprednisolone…500mg to be taken every morning .

Which leads me to my question …I am Sat here torn . I never take more than a paracetamol ( had a bad reaction post op to morphine years ago and has made me cautious ) …reading up am scared of possible side affects …my blood pressure was a bit raised yesterday , not that that’s a great surprise having wobbled my way round town , whilst keeping fingers ( and legs ) crossed my bladder would,t fail me on the bus !

My understanding is steriods at this dose can nip a relapse in the bud much quicker …desperate to get normality back a.s.a.p , work , energy , driving e.t.c ) …but can weaken your immune system and won,t change long term outcome of a relapse

Not taking steriods May mean relapse lasts longer , meaning my car remains on the drive , I remain stuck at home and I will be wise to take shares out in tenna lady …

I have no idea what to do and all joking aside for the first time since Fri I am scared …any advice would be gratefully received…do I take or not

Thanks …Izzy x

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Hi Izzy

Im new here, so hello to you.

I have had a bit experience with steriods in the past, i have found they have been great for things, i was in hospital years and years ago on xmas day with a really bad chest infection, i couldnt breath they put me on a steroid ventilator, this was like a magic machine, i went from struggling for breath to… well the effects were amazing. They watched me for a bit then sent me packing with a week supply of steroids in pocket… worked out great.

Good luck

3

Hi Izzy,

I am not in a position to tell you what to do, but it is true that steroids may help you get back on your feet quicker, but there’s no evidence they influence the end result, or the long-term course of the disease.

So it really does depend on personal circumstances, and how impatient you are to feel better, or how soon you need to feel better, for work or family reasons. It’s certainly not the case that it’s risky NOT to take them. You will (probably) have to put up with things for longer, but you’ll still (eventually) emerge in much the same state as if you’d taken them.

I’ve never actually been offered steroids (I don’t think my hospital is terribly much in favour, as I’ve seen a paper by one of the neuros, questioning their value). I was relieved, in a way, as I’ve never really wanted them, and not being offered meant I didn’t have the burden of having to decide.

I have always said I’d draw the line if I couldn’t see or couldn’t walk, as I’m not prepared to play “grin and bear it” with anything as serious as that, if there’s a chance of clearing it up more quickly. But for anything short of that, I’m fairly content to leave it to nature - and patience - to fix things. I know taking steroids will probably get me a faster recovery - but not a superior one.

I fear I haven’t helped, have I? Can you book a phone appointment with your GP or MS nurse, to talk through the pros and cons? But ultimately, every medication is optional, and it’s for you to decide - with appropriate professional advice.

I don’t think there are huge risks with taking just a single course of steroids, although the side-effects can be quite unpleasant.

Risks do, however, mount up with repeated courses, so you’re only allowed (from memory) a maximum of three courses in any 12-month period.

Unfortunately, you don’t know, at the moment, how frequently you relapse. If you were a frequent relapser, I might argue for holding off the steroids in case a “biggie” comes along later - if you’re only allowed three strikes, it might pay to keep them in reserve for when the worst relapses hit. But your history doesn’t suggest you’re having particularly severe or frequent relapses - enough to need steroids three times in a year, so it’s probably not a relevant consideration at this point (you’d still have two goes left, in any case).

If you do decide NOT to take them, you should probably make sure it’s on record that you didn’t after all, otherwise the assumption that you had will count as one of your three, and may be a barrier to getting more steroids if you really do need them another time (there’s a limit to how close together you can have them too).

I hope you feel better soon, whatever you decide.

Tina

x

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HI Tina

Many thanks for your reply and it helps to know a bit more about the protocol for steriods ( ie 3 strikes per year ) . Neuro did say it looks like I have had 3 relapses over past 3 years and possibly 4 th 6 years ago ( thought I,d damaged my knee , had an op but nothing found …problem persisted but disappeared spontaneously few months later ) . I have always got better , except for bit of tingling in arm and feet ( think I,d miss that if it went now so used to it ) and tiredness , but I work long hours and am always on the go so put it down to that .

This is worst one to date as legs so wobbly walking holding onto walls ( imagine a crab wearing stilettos ) sure neighbours must think I have been on the wine for breakfast , and bladder disgrasing me , but confident it’s a blip and will pass…also still getting my head around DX so that probably has an impact .

I did take the steriods this morning in the end ( along with something they gave me for lining of stomach) . My daughter,s graduation ceremony is in 3 weeks and want to enjoy it not be worried about “accidents” or worse have her friends thinking I,m a lush :slight_smile: …so far no better ( tho didn,t expect to be after one dose ) but other than a horrible taste in mouth ( ice lollies helping ) and a bizarre urge to clean oven ( I call that a perk ) I feel fine .

I hope you don,t mind me asking , but how long have u known u have MS ? Do u find it impacts hugely or r u generally OK ?

Looking on here it seems people have mixed experiences with regards to support , I think I,m one of the lucky ones as g.p and Neuro have been great …exactly 1 month from first seeing Neuro to DX and plans in place for follow ups . Told my immediate neArest and dearest who have all been fab ( my dad has even tackled the jungle that is my garden …been too wobbly to risk a tangle with the lawnmower… so that’s another positive ) determined to stay cup half full and look at the sunny side

Sorry to waffle but so many questions going round in my head today …

Thanks for replying and hope u are well at the moment :slight_smile: x

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HI Bennieb

​Thanks for your message , sounds like that must have been terrifying time …glad u got through it . I have just posted a long reply on here so won,t repeat ( bore ) everyone again , but have taken the pills and so far OK :slight_smile:

You say it new on here do u mind me asking what your “story” is .? Are you DX or like so many on here still in limbo searching for answers ? ( you can tell although my first post today I have been stalking these forums for a few weeks :slight_smile: )

Anyway hope you are OK whatever the reason that finds you here and thanks again for sharing your steroid experience :slight_smile: x

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A short blast of high-dose steroids basically is the treatment for damping down an acute RRMS relapse. They are what you reach for in case of acute relapse in the same way as you call the fire brigade if your house is on fire: it isn’t always pretty, and you wish you didn’t need them, but they get the job done. I really do tend to think of steroids in terms of a blast of icy water, quenching the inflammation that’s smouldering away in there and causing the problems. Not very scientific, but I find it helpful.

Don’t worry too much about the alarming side-effects warnings. I know you probably don’t feel like fortune’s darling right now, having just had a life-changing dx, but that doesn’t mean you are going to be unlucky with steroids - like all strong medicine they come with risks, but the serious ones are rare and the common ones are generally manageable. I have always had IV steroids, so I don’t know much about oral, but one side that they do have in common is a tendency to make a person a bit hyper and make sleep hard to come by. A box of Nytol or some similar over-the-counter sleep aid can be a blessing on steroid nights.

I hope that they do the trick for you, and fast. It is so good for morale to feel them working and know that you are on the road to recovery. Helps to steady the ship, and we all need a bit of that.

Good luck.

Alison

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Hi, glad our stories help a little. It’s nice to know aw are not alone…

I have only posted a couple of times, you will find my first post on this page … It’s called am I going mad

Keep me posted on how you get on. Have a good day

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Thanks for you message Alison , was very reassuring to hear your experience of steriods , especially liked your analogy 're fire fiirefighters …( had today,s dose delivered by very nice lady in white medical van yesterday but secretly would have preferred the fireman delivery ! )

So far no major adverse reactions …very buzzy but I call that a result …achieved more yesterday than I have in a week …never thought simple thing like cooking kids ( 22 ands 20 ) a meal would have me smiling like a Cheshire cat …more energy and legs less " jumpy and twitchy " but a lot more painful …I wonder if this is normal ?

Your tip about Nytol is a must and will be getting some today …i tried all usually home remedies hot bath , hot milk , no internet … drifted off about 2 a.m …was up cleaning bedroom Windows at 5 a.m …a job well done but seriously !!!

Also I,m becoming something of a forum / MS site stalker in my desperate quest for knowledge at the moment …roll on for contact from MS nurse…am sticking to this site alone now . …there is some scary ( and I know untrue stuff .)… posted out there …I will try to balance myself today be tween stalking and normality ( whatever that is …worry sometimes I won,t feel " normally again " ) but I guess that is normal too ??? Remember feeling simular when my daughter was diagnosed with type 1 diabetes aged 5…17 years on we barely give it a second thought ( until now that is )

Anyway enough of my rambling ( being cup half full all the time in front of my parents and kids gets draining sometimes so I,m afraid have started to share on here )

It sounds like you have a good handle on this MS lark and hope you are well

Hope everyone else on here has a good day too whatever you are up too

1 Like
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I don’t have MS but currently have bilateral optic neuritis and on my 2nd day of 500mg methlyprednisolone- I really struggled to get the taste out of my mouth yesterday but took them with a wee yogurt this morning and so far so good- I’ve also done a huge amount of housework today and feel like I’m slightly buzzing (like an electrical current running through me)! I’m happy to give them a go as its only 5 days if it speeds up my recovery! Good luck! Xxxx

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Hi Izzy,

Others have concentrated on your question about Steroids so I will tell you about Access to Work that is a Government organisation that helps disabled people(by taxi if needed)get to work and home. Also lots of benefits while in work to enable to do their job see Access to Work: get support if you have a disability or health condition: What Access to Work is - GOV.UK

George