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3rd day steroids - help?!

Dear All. I am newly diagnosed and I am my third day of steroids. I feel very rough and my symptoms are definitely worse…it feels as though the steroids are highlighting every symptom and making them three times worse.

Can anyone advise…is this the effect of the steroids (only third day), or is this part of having a relapse? What do I do? Do I wait for symptoms to subside? Could they be with me forever?

Can they get worse, day by day. Is there anything that i should be doing? I am eating healthily, drinking tones and running 20 minutes?

thank you so much x

Hiya

Yes no maybe.

We are all so different so can’t give u an answer.

For me I tried them X3 in 12 yrs-never again cos they make me worse.

Take take and be patient.

Ellie

the worst thing is that metallic taste. yuck.

try different tastes to get rid of it.

fresh pineapple worked for me.

i had high dose of iv steroids when i was first diagnosed in 2008.

they worked a bit too well.

i felt strong and invincible.

however i had a massive melt down when the treatment ended.

as ellie said, nobody can tell you how they’ll make you feel.

i will never have them again because i had a bone densa scan and it showed osteopaenia in my spine.

steroids aren’t good for bones so no more for me.

you could do very well on them so don’t let my doom and gloom put you off.

carole x

I cannot believe you rid the metallic taste with pineapple Carole. I honestly can’t imagine anything worse than mixing that taste with pineapple. And I love pineapple.

Patience

High dose steroids are peculiar. They can do different things for everyone, and each time you take them they can have a slightly different effect on you. (Although the horrible taste is always the same. I have learnt to take the tablets with milk if they are oral steroids, and to chase away the nasty taste with mints or chocolate. Never pineapple! But we are all different, so what works for Carole isn’t necessarily going to work for me, you just have to try different things to see what works for you.)

Chances are that the steroids haven’t yet worked. They don’t tend to work miracles. It might be that your relapse hadn’t reached its nadir before the steroids could work. It could even be that this time the steroids won’t work for you - it can happen. Or that they will be slowly working, and will help you to reverse the relapse over the next few weeks.

So, don’t expect miracles, steroids are not a cure, their aim is to shorten a relapse. Hopefully they will do that. And equally hopefully, they won’t give your body too much of a kicking in the process.

Sue

i tried lots of different stuff for the metallic taste.

watermelon was good too.

i’m a freak and i know it!!

carole x

Thank you for your answers. I am on day five, no sleep and exhausted. This forum is brilliant because it is all so confusing. Going to spend three days on Love Island! Thank you again