ellielou 12/03/15
Last reply 3 years ago
Steroids

Any advice for counteracting any of the nasty side effects of steroids? I’m about to start my first oral dose (500mg once a day for 5 days). Had IV before and felt crappy for a week, but this is the first dose via tablets. Am I right in thinking it’s best to take them in the morning? Thanks

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bonnielassie
3 years ago

Hi @ellielou. Have only just seen your message so I’m a bit late as you will now be nearly finished your steroids. I was on the same dose in Feb and yes, took them in the morning. Wow, what a difference to having the iv steroids. Could actually sleep! And was probably more tired than usual which I wasn’t expecting. How have you been? I was a bit concerned that the tabs give you 2500mg over five days wheras the iv is 3000mg over three. But reading about it the view is that they are equally as effective. The lack of side effects although is a bit concerning! Hope you’ve found them ok? Emma


ellielou
3 years ago

Thanks Emma. I’m doing ok, sleep hasn’t been easy to come by, but I do feel better (so far) compared to the IV… Last dose tomorrow so we’ll see how it goes. Feeling just a little under the weather, but so far it could be worse! Hoping to go on Tecfedira in the next few weeks as not currently in anything as yet, this is first property relapse. Thanks for your response x


stumbler
3 years ago

@ellielou , bear with those steroids. They’ll be working with your body over the next 6-8 weeks to help you recover from this relapse. 😉


bonnielassie
3 years ago

@ellielou, that’s good – sounds like you’re doing ok. Like Stumbler says, the steroids will keep working for a while so don’t be surprised if you’re not feeling yourself. Don’t think I’m quite there yet but better each week.

I’m possibly in a similar situation in that I will be making a decision about dmd’s. I haven’t been on anything as my Ms had been relatively stable until having two relapses a year apart. Can I ask how did you decide on Tecfedira? I don’t know what ones I will be given the choice of yet, but just wondered. Thanks.


ellielou
3 years ago

Thanks all. Feel much better after a better night’s sleep!

@ Bonnielassie Based on my history (first attack two years ago, couldn’t move my right hand (tumefactive legion… Nothing normal for me… came very close to having to have a brain biopsy… thank heavens for a great radiology team!), then a small tingle in the same hand last May, then this time tingles/numb from my waist down, but movement not affected) I’ve been offered either Avonex or Tecfedira. Tecfedira felt like the better option for me… no injections, better protection stats, easy enough to come off when it’s time to try for a baby (I just turned 30 and just got engaged… Yup, for some reason he still wants to marry me… Go figure!). But, my hospital only just started using it in December so I need it signed off but they don’t forsee any issues. Let’s just hope it works! Good luck, keep us posted!


bonnielassie
3 years ago

Hi @ellielou, that’s great you had a good sleep! You’ll gradually feel better and better – but take it easy as your body is still recovering.

Thanks for that. I’m in a similar sitaution, would possibly like to try for a baby next year (although am a lot older at 38!). So would like a drug that I could stop without any bad effects and like you tabs sound a lot easier. However, if I had to do the injection thing, so be it.

Take care for now. Rest up and let us know how the drug goes. X

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