currently on a 5 day course of medrone steroids (there is a longer name for them but I can’t remember it)
Each time I take these I become absolutely obsessed with my heart rate, so much so in January when I had a dose I ended up with my GP doing an ECG just to re assure me. I was hoping I wouldn’t need steroids again so soon, but here I am again with a pulse monitor app on my iPhone checking it every 5 minutes…someone tell me it’s not just me, not that I want anyone else to feel this way of course, but I like to think I won’t be alone in the mad house. But my husband may join me there as I can tell I am driving him up the wall.
I am reliably informed that I just keep babbling in an alarming way. But that does mean I’m too busy setting the world to rights and developing arguments that make perfect sense to me (if to no one else) to worry about my heart rate. I think that, as a general point, we ought to ask our spouses to excuse strange steroid-induced behaviour. Please reassure yours that you are not the only one to behave oddly under those circumstances.
I’ve generally found that steroids make me wakeful at night, which leads to a sort of speedy anxiety type thing. A bit twitchy. I haven’t had the heart rate thing with steroids but I have had it with sort of internal spasms. Such where I’m feverishly testing my heart rate because it feels like it’s racing and I’m about to have a heart attack. I bought a heart rate monitor a while back because of it. And whenever I’ve tested my heart rate it’s been normal.
Steroids do peculiar things to your body though, And each time it’s slightly different, so I’ve had mouth ulcers from them, oesophagitis and acid reflux, general edginess, a feeling like I’ve been punched all over, twitchiness and irritation leading to the verge of furious anger (though not full fledged psychosis!) (yet).
So I shouldn’t worry too much about your furiously testing of your heart rate. Next time it’ll probably be different!
Having steroids twice this year already isn’t too good though. They reckon you should only have steroids twice in one year because of the risk of osteoporosis in later life. Hopefully you won’t need them again too soon.
Having been recently diagnosed I started a three day course of IV Antibiotics yesterday afternoon. I noticed (during the treatment) a nasty taste in my mouth developed - that has lessened a little overnight but it’s still there really.
Second thing I noticed was that it took me some time to get to sleep last night - and i was awake again at about 2.45 this morning - thank goodness it’s only a three day course cos i do like my sleep.
Haven’t noticed anything else so far…will update if any further issues arise
Thanks for you replies guys - its good to know. Sue, I do know. I have been so lucky for the past few years and now all of a sudden 2 of my worst relapses in 3 months. I am concious about the steroids but neuro seems to think it will be ok and if i relapse again this year I will not accept any. I have just been offerred Lemtrada so having a think about that. All this is happening since I came of Tysabri. Juls - I hear you about that nasty taste in the mouth - I find it quite metalic. Is it a good excuse for chocolate??? I hope yours kick in soon and give you some releif. The not being able to go to sleep drives me crazy. I never notice how much my husband snores/chats and laughs in his sleep until I am back on the roids. xx
The Medrone gives me hideous insomnia, that’s the only real problem that I’ve had with them, and it does only last while I’m taking them, thank god! So I think I’ve been lucky there.
The foul taste’s terrible isn’t it! I’ve had them enough now to have developed a sneaky way to minimise that though. I poke the tablet, sideways on, down into a spoonful of something thick or set so it’s buried - something like yoghurt, chocolate pud, creme caramel etc. - and get it down my neck immediately, before the taste can infuse the spoonful!
Got to make sure to swallow swiftly without chewing/squishing it in your mouth at all, and really gotta make sure not to lick your fingers afterwards or YUK! But if you can master that, and then finish the rest of the pot once they’re taken, to get rid of any hint of nasty taste that might have snuck through the defences, then you should be home free.
Hayley do you think your relapses were caused from coming off the Tysabri then? I think I saw talk on here that docs now think it’s better to start a new DMD straight after stopping Tysabri, rather than having a flush out period, because that seems to trigger a relapse. I think that’s what happened to me; I relapsed for the 2nd time in 10 months on Tysabri so was taken off it after the 2nd one, then relapsed again just 3.5 months later.
Oh, I’d say that nasty Medrone aftertaste’s a definite good reason for chocolate, I’d say it’s an excellent one actually.
The nasty metallic taste in the mouth is utterly foul. I tend to take Medrone with milk, it kind of helps you get them down. I also tend to drink milky stuff when on them, chocolate, mocha, cafe au lait (my dolce gusto machine is excellent at milky frothy stuff!). I eat sweets, fruit pastilles are quite good, or mints, extra strong mints are good if you don’t want too much sugar, you can just take tiny bites and make one mint last ages. Or of course the staple diet: chocolate. I think steroids are an excellent excuse.
I absolutely put it down to coming off Ty, my numbers on the PML thing got so high my neuro just said it was for the best and to be honest I was frightened off it. But on ty i felt great - i had many days where i completely forogt about ms - its a shame it wasnt .like that for you… And now…well its just really bad. My hubby has MS too and he isnt on any DMDs and manages really well and I thought I might be like him…no such luck.
They took too long getting everything together for the Lemtrada for me, because I was the first person in the area to go on it they had no infrastructure in place and it was taking months so I was put on Tecfidera instead. My MS nurse intended it just as a stop gap until they could give me the Lemtrada, but my neurologist nixed that idea, he didn’t like the idea of me swapping meds needlessly.
So now I’m staying on Tecfidera unless that doesn’t work either. But so far -1 year without a relapse - it seems to be working!
Just WISH I’d been put on it straight away, because the cognitive damage done by that last relapse hasn’t gone away and if it WAS caused by the Tysabri flush out period it could have been avoided
I was dreading the Lemtrada treatments, can’t deny that. I’m happy to be on something that’s so easy to take.
Nothing new to report really from day two of my three day steroid sessions. Nasty taste remains. I had a slight headache and occasional nausea yesterday but they seem to have gone.
Awake at 2.45am again - must be the steroids cos I don’t really understand the concept of 2.45am
On a BIG plus side - although nothing to to with the treatment - I went to a local MS Support and Therapy group fundraising thingy last night…won a raffle prize…EASTER EGGS AND GOODIES. I will have to eat them or hide them all before my daughter gets home from university for Easter next weekend hehehehe
Great prize!! I am done with the roids for now thank god. I started having them with my activia which did make the taste a bit better…although now I want an easter egg…
For all those who get that nasty metallic taste in the mouth, of course, chocolate is an answer - but I did find pineapple juice more effective at killing the taste and stopped it coming back for longer than anything else I tried…
I found that the steroids made me so hungry. In a week, I put on 7kg. Couldn’t stop eating, and they also stopped me sleeping at night. I ended up going back to work the day I was prescribed the steroids, but warned work that the side effects are very unpredictable and can be severe. I was moody (not helped by being tired), so everyone left me well alone whenever I fell asleep at my desk! I found myself biting peoples heads off, and then apologising immediately because I knew it was wrong and a case of 'roid-rage. I do ask myself if it’s worth going on them. They don’t affect the severity of the relapse, but may bring it to an end sooner, so I guess it depends what my relapse is as to if it’s worth the side effects, so I’ll be thinking carefully next time I have a relapse…
Had my last dose of steroids on Friday and aside from the bad taste and the lack of sleep I felt it had gone rather well and was looking forward to things getting better.
Little sleep again Friday/Saturday…Saturday morning saw me feeling rather weak and dizzy (which have been symptoms anyway) and with the bad taste, tiredness.
Saturday/Sunday I slept pretty much normally which was a relief. Bad taste still there…feeling very dizzy, very weak and very tearful.
Sunday/Monday slept well but all the above still applies - I feel SO much worse than before the steroids.
Anyone have any input as to how long it will be before things improve? Will they improve? Do I need more chocolate??
