I was diagnosed with RRMS 5 years ago after a massive relapse and was treated with IV steriods that made me feel rubbish and seemed to do very little to help with the relapse (it took 4 months off work and probably 12 months to get back to ‘normal’)
I recovered quite well from this first massive relapse and have been on Avonex for the last 4 years. My MS has been pretty quiet for most of this time with a few blips here and there but nothing major, however over the passed few weeks my legs have reduced feeling/sensations and are really stiff and heavy - I feel like I’m about 90 years old when walking and I’m only in my thirties!
I’ve just spoken to my MS nurse and she’s said it sounds like Im having a relapse and I need to rule out infections etc (I don’t feel like I’ve got one). If Im clear from infections, I’ll need to decide whether to have a course of oral steroids or not.
My question is … are oral steroids worth it? Do they make you feel rubbish? Do they stop the relapse and/or speed up recovery?
Any advice would be greatly appreciated (I’ve never taken oral steroids before)
I am two days in to a five day course of oral steroids, 500mg a day. I have taken them once before at the beginning of my first clinically observed episode. The was three years ago and put me at home for two months. Like you it took 12 months+ to start getting back to normal and life has settled down since.
My first course was only for three days and I did feel better, more physically capable, over those three days though I spent the next three days asleep on the sofa. I didn’t feel shitty nor had any problems other than with my first episode.
I was on Rebif until earlier this year when I was switched to Copaxone after I developed antibodies. Neither treatment have had a negative effect on my life or well being.
Two weeks ago I felt tingling in my top lip which spread throughout the right side of my face. Numb rather than any sensation. I agreed with the MS nurse to wait and see what developed before diving into the medicine cabinet.
One week in my speech and tongue became affected and some of my original balance and co-ordination deteriorated as they had done three years ago. The nurse thought it was time to try oral steroids as it was having an impact on my life (work). Much of this week has been spent working at home (more restful surroundings) and I’m now only really troubled by a frozen Trigeminal Neuralgia (TN) nerve, my other symptoms are returning to normal. I worked most of today in an office and even answered a few phone calls. Drinks are taken carefully as every shirt I have worn this week now has coffee stains.
Nothing has occurred to put me off taking the oral steroids but that could change during the remaining three days of my course. Nor can I currently attribute any benefit at this time.
I expect others have a greater knowledge and experience to base their views on. I’m new to this MS business and the medics I’m lucky enough to have looking after me seem professional and caring. They recommended oral steroids and I trust them.
I hope it is only the weather which can spoil your weekend.
I’ve had both IV steriods and oral steriods. The IV’ were over three consecutive days and apart from a bit of insomnia and a bit shaky on the first day no other side effects, unfortunately they didnt actually work as I don’t think it was an actually relapse more of a small progression. The oral steriods on the other hand did work quite quickly and stopped the relapse but the side affects were much worse I felt like I’d been hit by a bus, the fatigue was dreadful and my skin hurt which sounds silly but if I touched anywhere on my body it was tender it was a very strange feeling. The second time I had them I decided to try to decrease them gradually and I didn’t feel half as bad that time. So both times on the orals they stopped the relapse within a week and I presume the IV would have done the same had it been a genuine relapse, I just found the side affects worse with the orals.
My opinion after taking them on three sepatate occasions is initially they make you feel rubbish (side effects) then you feel great (euphoria) ten a lil rubbish again. Then back to pre lapse feeling although the last release left me with weakness in the left leg however I’m still doing okay and am coping despite this but I do feel on all occasions the steroids in the end had a positive effects despite the damage left last time. That damage was still an improvement on the relapse itself and effects good luck Hun x
Hi Ruth I’ve had IV steroids once over 3 days and oral steroids once over 5 days so I am by no means experienced. Both lots of steroids made me feel jittery and hyperactive even though I couldn’t physically rush about as my mobility was impaired due to the relapse. They make me feel elated when I really shouldn’t be. They give me indigestion unless I take tablets to counteract this. I am now on lansaprazole so last time I just took extra for the course of the steroids. I can only sleep for 2 hours a day even if I take the steroids in the morning. When I finish the course then I get the slump and I am weepy and sleepy for about a week. I do think they are worth it for severe relapses (in my cases the ones which have made walking very painful, difficult or almost impossible). They do make the difference between barely shuffling along and being able to walk (albeit for short distances) by the end of the course. Good luck with your decision Tracey x
Thank you for all of the advice and support Think im going to chill out over the weekend and if i’ve not improved by Monday, Im going to contact the nurse again about the steroids. Thanks again Ruth xx
Good luck Ruth I forgot to mention, they taste foul although not everyone thinks so. I took mine at breakfast to help with insomnia, which failed, but sucked mints to help get rid of the taste for several hours afterwards. Tracey x
I took them Fantastic for me really helped, so much energy. Like Tracey said bit down afterwards, and horrible after taste but a small price to pay for the enormous help. Would take them again instantly if I needed to. The longer you delay , the more you’ll worry. Take care Gray
I’ve had 3 courses of oral steroids over the years and they worked for me and got me back to work within 10-14 days. You have to take 5 tablets all at once-I took them in the morning. The first time I had them I developed some acne type spots but these went after a week. The 2nd and 3rd time they disrupted my sleeping pattern and I got about 2 hours sleep each night until I finished the course- but surprisingly I didn’t feel tired even after such little sleep!
I relapsed a few weeks ago and they tryed to palm me off with oral ones but the I.V methyl-pred is deffo better and works a lot quicker within the 2nd day… I’ve got the same type of ms and I’ve had around 8-9 relapses I got diagnosed in 2007 and am now 24, everytime I’ve relapsed its worked a treat for me, it took a little longer this recent relapse and almost had to have a plasma exchage but every other time its worked within 3 shots Good luck
Ive taken these all my life, on and off. Steroids definately saved my life, countless times. I took it orally and through IV, when ever I got as far as ER, with life threatening asthma attacks.
After so long struggling, getting weaker and weaker, these steroids turned everything round in an instance. I felt like Superwoman.
It was brilliant for infections and inflamations, and seemed to work straight away. It gave me so much energy, I never felt better. Only side effects I noticed, were increased epitite, bloatedness and thin skin which bruised easily.
The doctors only give these to me as a last resort, as they are very strong drugs. I would not take them long term if I can help it, or too often, as they can effect the body in strange ways. Like increased body hair and deeper voices - on woman.
However, it really helps to know they are always there in case of emergencies.
Every one has different needs for these steroids, but I fully appreciate how fantastic they are. (regardless of the side effects).
however I’m still doing okay and am coping despite this but I do feel on all occasions the steroids in the end had a positive effects despite the damage left last time. That damage was still an improvement on the relapse itself and effects 
good luck Hun x