Well hello, I was diagnosed with MS last Friday was give oral steroids straight off- there not my new best Friend I can tell you that…! I can’t believe how sick they make me feel… Bloating is an understatement, actually scared for tomorrow the 1st day of not taking any, not sure I’m really ready for the cold turkey. Please tell me it gets better when you stop taking them?
I had them little brown ones started on 8, 12 then 16 for a week then cut down again or somethig like that.
I felt like I doubled in size, metal taste in mouth eating everything and many mega late nights.
From the last day to taking them it took 4 days till I got a good nights sleep (back to normal).
I did not get any shakes, DT or withdrawal after I stopped taking them and never even had that with all the intravenous steroids.
Sorry to hear of your very recent diagnosis.
I hate the side effects of oral steroids but they do kick start a recovery so they are worth it for severe relapses.
They make me jittery and hyper, keep me awake at night and make me feel exuberant (and more of a chatterbox than ever!) when I should be feeling anything but … Oh, and they taste dis-gust-ing!! Bleurgh!
When I stop taking them, I go to the other end of the scale. Weepy and sleepy (sounds like two of the dwarves!).
Like I said, they are horrible but keep in mind that if they make you feel better than you were last week, in the long run, then they are a good thing and the side effects only last a short while really.
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Tracey xx
I hate them too. Haven’t had them for the last three relapses I’ve had because I hate the crash I have afterwards and they have never really worked for me. And I literally did double in size when I was having them twice a year!
Well, not disagreeing with Tracey - but sort of the other side of the coin:
It’s too late this time, but IF you’re in a similar situation again, do bear in mind you don’t have to accept the steroids, and there’s no evidence it will harm your prospects at all if you choose not to. Although recovery may be slower, it will still be just as good in the long run. Steroids don’t affect how fully you recover, only how quickly. So if you really hate them, and don’t mind waiting longer for recovery, there’s nothing wrong with saying no.
Tina
x
Sorry about the diagnosis, i hate the side effects of steroids but I do find they make my relapses less severe and shorter. I’ve been having problems for months but put off the steroids got to the point where I couldn’t walk or write so Gave in and went to neuro and got 500mg 3x a day for 5 days, went back to work and collapsed on the desk for 3 hours - my manager did make me a cup of tea lol! But now I’m much better after months of problems I’m starting to feel normal again but neuro said I’ve got to have iv next time. Not sure of criteria but if side effects are bad for you, perhaps you could ask for iv next time?
I don’t see it as disagreement in any way, Tina. I agree completely. I did in fact turn down steroids for my second relapse last year as it wasn’t as severe and I couldn’t face the side effects again.
I did say at the start of my reply to the original poster that they were useful for severe relapses and that’s the only time I will take them. I have only taken them when I have seized up so much that I really cannot walk. I personally think it is worth taking steroids then because by the end of the course, I am able to get around again rather than being housebound for goodness knows how long. I’m not a stay at home person so if I can at least get to my car and pop out for a little while each day then I don’t get depressed being stuck indoors all day.
Tracey x
i refused steroids because i am osteopaenic and i dont want it to get worse.
steroids can increse the risk of osteoporosis
carole x