I hope someone can offer me some advice this morning.
In general I count myself very lucky with regards to my MS. I was diagnosed with RRMS eight years ago, aged 23, and apart from some fatigue and l’hermittes sign, I’m usually very well and active. I have been on rebif for most of this time with two breaks for having babies.
I’ve only had one significant relapse in this time which was, unfortunately, whilst I was pregnant with my second son. It consisted of the worst symptom I have had, Nystagmus. Anyway, I was unable to have any treatment due to the pregnancy.
Now I find myself, again suffering from nystagmus. It affects my balance and vision in particular. I haven’t been out much in the last week, for fear of falling over and I am unable to drive. After some discussions with my MS Nurse and GP yesterday, I was prescribed a five day course of Medrol 500mg per day.
This will be my first steriod treatment and, to be honest, I’m really quite apprehensive, mainly of the side effects. This is certainly not the worst I’ve ever felt with nystagmus and I’m wondering whether to wait and see if it resolves itself.
The only upsetting part about it is that it’s my birthday on Monday and my husband has arranged to take me to York (child free!) for the night and I’m unsure how I’ll cope with walking about
If anyone can offer any advice/experiences on steriods, I would be very grateful.
Hi Katie I’ve been ok with both times I’ve had steroids. They just made me want to eat more. Developed a chocolate obsession but apart from that I was ok. Had quite a lot of energy on them. X
Hi Katie They make me feel great while I’m on them. I feel elated, could talk for England (I’m a chatterbox normally so add steroids to that and there’s no stopping me!), I feel full of energy although my body limits what I can do. I don’t sleep much while I’m on them, only about 2 hours at night and maybe an hour in the day if I’m lucky. I’ve only had oral steroids once and IV steroids once though so I don’t have much experience of them. When I finish the course though, I just want to sleep and become very down for several days. I call it the ‘weepy and sleepy’ stage. I still think they are worth it. I’ve never had eye problems with MS but I have taken steroids for relapses causing problems with mobility and by the end of the course I can walk again. It’s still a long recovery period afterwards but they do kick start recovery and get me mobile again so I’d still take them again if I felt I needed them. Tracey x
Oh, btw, they may leave an aftertaste in your mouth. I took mine at breakfast to try to help with the insomnia (fail) but then had to keep a bag of mints nearby for several hours to help get rid of the taste. Yoghurt drinks helped too. Tracey x
Hi, this is my 1st comment as am new to the forum - I was diagnosed with MS last May after two relapses, one after the other. The 2nd was a mobility related one so i went straight in for a five day IV steroid course. After nearly three months of feeling awful it really helped stabilise me. I’m currently having my 3rd relapse, including mobility issues and double vision.i’ve only been on treatment for a month and it hasnt kicked in yet so after suffering for a few weeks I’ve gone with my consultants advice, and am going into hospital for another 5 day course next week. My last experience was fine, a little worried about the amount of drugs in my body but its closely monitored by hospital and I didn’t have any side effects last time, maybe just an initial increase in appetite. I have been warned by my MS nurse about possibility of feeling down after, but hoping that doesn’t occur as was fine last time. The uncertainty of how long the relapse symptoms would last, makes steroids the best option in my mind xx
The side effects were short lived for me-lack of sleep-I just didn’t feel sleepy at all and the first time I had them I developed some acne type spots on my face which went after a few days. Make sure you take something for your stomach such as omeprazole or lansoprazole as the steroids could upset your stomach- your MS nurse/GP should prescribe these at the same time.
Have a nice birthday next week and enjoy York if you go-lovely city
Thanks so much Tracey, I feel so bad complaining about my symptoms - they seem so insignificant compared to some, including yours Tracey. I am very thankful for my current state of health and also inspired by others who carry on through much worse. Anyway I’ve taken them, about two hours ago. I feel ok so far, apart from feeling like i have a mouth full of copper coins, bleurgh! Is anything else likely to occur. Katie x
Just suck lots of mints I still count myself as lucky as I haven’t had that many relapses and there are some here who have had endless back to back relapses. Whatever symptoms you have, they still impact on your life though and it still isn’t the life you had planned so don’t ever feel bad for complaining about them - it isn’t a competition :-).
Hopefully you won’t get any other side effects, some do, some don’t. You may find it a problem sleeping so have something handy to do just in case (ideal time to catch up on some reading) and hopefully GP gave you something to combat indigestion as steroids are hard on the stomach. If he/she didn’t and you do get stomach pains then give them a ring.
Thanks so much for all of your advice and reassurance. I still feel ok so far and I’m half a bag of Murray mints down I didn’t get anything for my stomach though, which I’m a bit worried about. I’ve eaten breakfast and lunch and everything seems ok. Do you think I should call out of hours and ask for something just in case? Katie x
When I was prescribed them, I was also prescribed another tablet to line stomach ( sorry can’t remember name ) as the neuro said they can be harsh on your stomach Gray
I didn’t have anything when I had IV steroids years ago and was fine but did suffer with indigestion on the last day. They hadn’t told me about any side effects though so I hadn’t realised it was connected. Last year I was already taking lansaprazole by that time (acid reflux is a problem all the time now) so I was told to just double the dose while I was on steroids. See how you get on but if you do start to suffer with indigestion, then definitely ring out of hours for advice. Tracey x
Hiya, just thought I’d update everyone who kindly offered advice to me yesterday, on my steroid experience so far. went to bed with awful tummy pains last night; managed to get to sleep and stayed that way for most of the night; woke up this morning with a red, hot and puffy face :-o; thought I’d better give the docs a call; came away with a prescription for lansaprazole and told not to worry about the face! I’m feeling a lot better in myself this afternoon, although my eyes still have a mind of their own :S The hubby and I have decided to head off to York tomorrow regardless and try to make the best of it - I just hope he’s prepared for me clinging on to him for dear life (and balance)! Thanks again everyone for the advice and I hope everyone is well. Katie xx
I have spots after steroids. I got to 31 never having spots and now I use clearasil lol but I’d steroids in September and then in November. And my skin is just starting to clear up. My spots only occurred if I touched my skin or if I’d been kissing someone
Oh, yeah, I forgot about the flushing. How could I forget about that?! I didn’t get a puffy face but I did go a bit red for a few days. Just keep hanging on to the thought that if they speed up your recovery or just give you an energy boost for your trip to York it will be worth it. Have a good time.
I still count myself as lucky as I haven’t had that many relapses and there are some here who have had endless back to back relapses. Whatever symptoms you have, they still impact on your life though and it still isn’t the life you had planned so don’t ever feel bad for complaining about them - it isn’t a competition :-).
I didn’t get anything for my stomach though, which I’m a bit worried about. I’ve eaten breakfast and lunch and everything seems ok. Do you think I should call out of hours and ask for something just in case? Katie x