I was diagnosed with MS in December. I am now having my first relapse since. I’m dizzy all the time and my vision keeps going blurry and when i wake up for the first 10 minute or so all i see is double. The last time that this happened was two years ago and i was in hospital for three nights on separate occasions throughout September. My doctor put me on some tablets for dizziness that worked. I asked to be put on them again now rather than anything stronger but they aren’t touching me this time. I’ve been like this for a week now. I went back to my doctors this morning and he’s put me on steroids. I just want to know what they were like for anyone else who has taken them? As i’m so scared to take them. I’ll be honest whilst i’m writing this i’m crying. Stupid i know but I just can’t stop worrying. I finally feel like this is all real now and it terrifies me.
I love steroids, for me they work. Whilst on them I have insomnia, excess energy and slightly elevated symptoms, but then they start doing their job…I start to feel human again.
I had steroids for a relapse at the beginning of Feb this year, its taken its time to work but starting to feel normal again. The steroids should bring you out of a relapse and reduce inflammation of spine and brain lesions. They do not stop disability accumulated from the relapse.
Don’t be scared of the steroids, they are to help you, make sure you take the stomach tablets with them. I didn’t and suffered with heartburn/reflux the first time I took them.
It is all real i’m afraid, you are relatively recently diagnosed and will still be coming to terms with the diagnosis and yes that is bloody hard but the black hole DOES have light at the end, is your neuro an ms specialist and do you have an ms nurse? These are two vital people in your future ms healthcare and they have to be right for you.
All the best
Hi Nikki, Thanks for the quick reply. Yes, he is and he’s referred me to the MS nurses but so far i haven’t had an appointment to see them. also I never got given any stomach tablets with them. He’s put me on a 4 week course which i gradually reduce every week till i’m just taking two then i have to go back and see him. I think it’s just the thought of taking them that’s scaring me as you hear bad things about them, but i suppose if they work then i should. I just want to feel normal again and not like i’m drunk all the time.
Really? 4 weeks…what the first doseage and name of the drug? My last neuro was going to put me on tapered steroids over two weeks, starting with a high dose then tapering off like you describe.
Bad things with steroids are more accumulative over regular use over long periods of time, for example, my aunty had reumatoid arthiritus and was taking steroids every day, for years…I don’t know the doseage she was taking, but she blew up like a balloon and had problems with her bones.
With MS relapses, you are normally put on a 5 day or 3 day course (depending on doseage)…but I am familiar with the longer term taper course…though how effective it is I don’t know as I wanted a higher dose over a shorter period of time.
If you have ms and have been prescribed steroids for a relapse then take them…get rid of that drunk feeling, I know exactly what you describe…don’t be scared of the steroids, in moderation they are your friend
If you take them and they work, you’ll be requesting them before being prescribed them with future relapses…
Plus I’d chase up the MS nurse December til now is a long time to be floating trying to get your head round a diagnosis on your own, hope you have a good support network at home. If you need to cry, cry, I spent virtually every day crying for whatever reason for around 7 months post diagnosis. I still cry everytime I speak to my ms nurse, its the only support I really have, doing it alone is tough.
The short blast of high-dose steroids is the current standard for a routine RRMS relapse. I’ve had longer, much lower-dose courses too in the distant past; they seem to be largely out of fashion for MS relapses now, but these things do tend to drift in and out of style over the years, don’t they?
I’m taking prednisolone. They are 5mg each and I take 8 a day for a week then 6 the next then 4 then 2 then I have to go back and see him. I’ve started them today so we’ll see how I go. I do have support at home but I have a lady who I work with that also suffers from it so she’s been amazing as she can tell me first hand where as myself and my family are still unsure about what it exactly is but we’re getting there. Also will chase up the MS nurses I’ve probably been lost in the system as I did when I was waiting for the results of my lumber puncture. It’s just my luck haha.
I can assure you that the steroid doseage you are taking is not massive and nothing to worry about. My first (2013) dose was 1000mg per day of methylpredisnolone for 3 days. My second (Sept 2015) and third (Feb 2016) have been 500mg per day for 5 days to treat relapses.
Oooh, I wish I had someone who suffered with the same condition I could bounce stuff off in person…that would be so handy.
Best of luck with your first set of steroids
Thank you and thank you for taking time to speak to me you’ve been very helpful. I’m on sick from work at the minute because of this so I just want to get back to normal so I can get back there and then I’ll be annoying the lady I work with lol.
Thank you once again x