Relapse treatment

Everyday living
1

I am now 2 weeks into this relapse, it has got progressively worse (muscle fatigue, numbness /pins and needles on left side, Hug on Left side) and I a due to have another MRI on tuesday. I have the relapse clinic on wednesday when I hope they will suggest steroids as I need some relief from this now. So my question is, when they give steroids are they tablets or IV?

I have read that steroids are more effective when given quite soon into a relapse. How soon is soon? Days, weeks? Are sterooids at this point going to help at all? As you can tell, I have never needed steroids before. What kind of steroids are they and do they really pile the weight on? This is the 1st relapse since diagnosis and albeit I don’t want to have them, i need to go back to work and I am really hoping that they will help some way to getting me back to work.

Any advice would be appreciated

Thanks

Nette x

2

Many hugs your way Nette, I hope that tuesdays appointment goes without stress for you.

As to steroids, not much help here, I only ever took steroids with my first attack. My CIS incident. I lost feeling and control over almost my entire left side. (Quite amusing to startle yourself with your own body. Sit down, your arm flops onto your lap, you jump in shock that someones touching you.)

I didn’t had the weight gain side effect. If I had I wouldn’t have worried too much as it’s only likely to be temporary if you get it at all.

I did get severe stomach pains, and the medication they gave me for that caused heart palipitations, then the medication they gave me for that caused my Raynauds to flair up (Think really bad circulation, no blood in fingers and toes).

But even with all of that, I personally would still consider what is basically a bunch of MINOR side effects are considerally outweighed by the reduced chance of permanent scarring and damage to my nerves. (Minor as in, there’s an obvious cause that can stop as soon as the specific medication stops)

I quite like being able to feel my body, so yes I’d take steroids again. If the symptoms are bad enough. I’m lucky though, generally most of my symptoms aren’t worth me getting those side effects again.

The one exception to this rule though has to be the eyesight issue. Any eye problems, I’d get myself straight to the doctor.

I’m not any sort of medical practitioner, however there are several ways of taking steroids, they offered it to me as an IV but did suggest it’d be quicker for me to take the oral version as I was in A+E and they were a little busy. Two bottles of foul tasting mixture I had to put together myself.

However I’m sure the doctor will talk you through the side effects and efficaciousness of corticosteroids.

Good luck with it all, here’s hoping that the glowing mri is dimmer for you next week.

3

Hi. I’ve had steroids three times since nov 2010. The last two lots were Sept 12 and jan 13 so close together but two separate relapses. I found they worked for me . The side effects are pretty rotten … insomnia, funny taste in mouth and low moods were my main ones. Also they can make you feel a lil worse before better initially. I do think its important to rest up whilst on them too although I only did this on my last dose ans worked the other times however I knew I had annual leave the week after coming so that’s probably why I chose to do that. I took tablets. Five each morning so to be in with a chance of some sleep later on. Good luck and hope they work for you hun. They do say it speeds up recover but may not make a difference to what the outcome would be anyway. Xxx

4

Thanks Lisa. I just hope they offer me something. Went to the doc this morning for another sick note and he has given me 8 weeks. I can’t take 8 weeks off! I really hope something helps to take the edge off it even!

5

I had five weeks so hopefully the sooner you get the steroids in your system the sooner you’ll be back. It’s always been my GP tpo ejoy prescribed the steroids xxx

6

If you get a choice, I would suggest IV steroids.

IV means 3 or 5 days of tripping into the hospital, and about an hour (more on day 1). Make sure you get an Omeprazole capsule for the two days following (the stomach cramps are not pleasant), check this on Day 1.

Oral means 5 tablets/day for 5 days. They taste absolutely foul. It does not matter how fast you swallow them. Everyone who has had this will recommend their favourite very strong mints - so make sure you have plenty to hand. You should get 2 weeks worth of Omeprazole as a follow-on (as well as one for each day of the steroid tabs), this means no alcohol for about three weeks. I missed my glass of wine with a good pasta!

With IV, you could feel an effect within a couple of days, with oral steroids it could be longer I found it was nearly three weeks before I noted an inprovement.

HTH

Geoff

7

Hello,

I am 3 weeks into a relapse and have just finished 5 days of oral steroids. My relapse has finally stopped getting worse.

I asked for iv but the hospital that treats me is rubbish for people with ms. They always say no. But the pills do seem to kick in quickly with me. But i find the side effects are much worse on the pills (no sleep, weird appetite, spots and not being able to relax).

Before you start steroids make sure you have no ifection (uti etc), because the steroids will make it worse.

Goodluck,

Darren