Hi I am having my first relapse since dx 3 years ago. I saw specialist yesterday who confirmed relapse and for the next 3 days I am off to DPU at hospital to have steriods. I’m really scared as haven’t had steriods before so don’t know what to expect and worrying what this all means. I work full time and for the first time since dx was signed off last Monday. The specialist has also booked me in for an MRI to check for changes and mentioned that we may look at changing meds, I’m currently on Avonex. So many thoughts whirling around my head at the moment. Tracey
Hi Tracey!
Sorry that you’re having a horrible time. Firstly, think positively. This is your first relapse in 3 years, so you’ve done really well. So many MSers on here are having far more frequent relapses.
Secondly, you’re going into hospital for IV steroids. That’s good too. Steroids work by reducing any inflammation, which, unfortunately is something we have to accept with MS. IV steroids are stronger too; hence why they are given in a hospital, so you can be monitored closely.
Steroids can be very effective, and generally patients respond very well to them within a couple of days. Although, it can take longer, so be patient.
I’ll keep my fingers crossed that you respond well to them, but, please be aware that, unfortunately, steroids do not work for everyone. It may be the case that you have to wait for the relapse to tip over into remission. Personally, for me, steroids (Methyl-pred) had very little positive effect on my relapse and I slid quite a way down the hill before I could crawl up again. But, that said, we are all different and respond differently to treatments.
Keep your spirits up. Best wishes
Tracyann xx
Hi Tracey
Sorry to hear about your relapse. Hopefully the steroids will kick start a recovery. I hate the side effects that go with them but think they are worth it for the relapses that really affect daily life. You may be lucky and not experience any side effects but make sure you ask what to expect. When I had IV steroids they didn’t warn me about any side effects and I wasn’t sure what was part of the relapse and what was caused by the steroids!
I was the same last year. I had gone 3 years without a relapse on Rebif and then I had two relapses within 3 months which was a bit of a worry. I’m now on Gilenya and feeling much better although still nowhere near as mobile as I was before the relapses. I’m still improving though. I only notice it when I do something I haven’t done for several months like having a day out in London and then I realise that it is easier than it was a few months ago. It’s such gradual improvement that I don’t notice it on a daily basis but I am getting there. I’m sure you will too.
Get well soon 
Tracey xx
I got diagnosed in 2007 with relapsing and remiting ms and I’ve relapsed once a year up until this year where I relapsed 3 times and neurologist’s admitted it was a copaxone failure. I got put on I.V drip for 3 days and sent home but didn’t respond to the methyl-pred so got admitted again and put on another 3days of methyl-pred and they explained if I didn’t makea recovery after my 3rd bag of it ill have to go to salford hope hospital for a plasma exchange. Luckily I did respond to it and it works pretty good. This was the worst relapse I had due to loosing movement in both legs and right arm, face numbness and tongue numbness. Don’t expect the worst as its worked pretty good for me everytime. I usually relapse and go in hospital and after 3days of I.v drip I come out ‘right as rain’ and felt it working pretty instantly within day 2. Unfortunately it doesn’t work the same for everyone but its worth its weight in gold. There now trying & testing me for tysabri, they put me through 2 mri brain scans 1 with and 1 without injecting dye and found new legions in my brain. The sethyl-pred worked a dream for me on my 1st relapse and after a week I returned back to work plastering. Good luck & hope it works for you. Martin
Hi Tracey,
In my experience (I have been diagnosed for 8 years now) steroids do a pretty good job of knocking a relapse on the head. They are nasty, but they do work!
You might find yourself with the munchies, a metallic taste in the mouth and have so much energy that you can’t keep still. You might want to choose a good book to read as you might be up all night as well! But then you might not…
All the best and I hope the 'roids to ther stuff…
Steffi
The only bad thing I’ve ever experienced with methyl-pred is (steroid acne" 1st time I had it I got it on my face lasted a week or two & my most recent relapse its still on my chest and back. Its a excellent drug though, I’ve never had the munchies but I know what steffi means about the energy
Hi Tracey
I was dreading going into hospital for my steroid infusions but it was totally painless and even quite relaxing. They stopped the relapse dead. On the first day I could barely walk. By the last day I was walking almost normally again. The only side effects I noticed were a metallic taste in my mouth a a slight head buzz (like caffeine).
I suppose everyone’s experiences are different but for me it was no problem at all and the benefit was huge.
Hope it goes ok. I’m sure you’ll be fine.
JZ
Thank you all for your posts. I am having last dose tomorrow and have the munchies and didn’t sleep brilliantly but hey ho if it works then worth it. Specialist has booked me in for a MRI in April. He wants to see if any changes and talked if changes then will look at changing meds. I currently rake avonex. My feeling is one relapse in 3 years is good so is there a need to change? Tracey
Copaxone was a medical failure for me and there now not suggesting any other meds just tysabri for me, I’d say 1 relapse in 3 years is ‘doing good’ but hey I’m still learning this ms stuff as I took it on the chin when I got diagnosed and thought nout of it, its just now that I’m thinking its important to know about it and its perks. I was just a teen when I got diagnosed so it went in 1 ear and outa the other… I’m glad the methyl-pred is working though do you feel much better now uve had a couple of doses of it? You will feel the fatigue when you get outa hospital If you’re not already feeling it. I read they give the ‘steds’ to pregnant women also so it was reading that made me realise it can’t be that harmful. Hope you have a quick recovery and return to day2day life Martin