Having my first serious relapse since I was diagnosed in 2015, saw my MS nurse Wednesday who identified that I had a UTI and needed to clear that before trying steroids. So I’ve had a short course of antibiotics and am due to go back Monday where I hope to get steroids. I’ve got so many questions and not sure who to ask.
What should I expect?
IV or pills or what?
What side effects should I be ready for?
And the 64-thousand dollar question - not that I’m expecting an answer to this one as the really important questions in MS always seem so have the answer “wait and see”… - how long before I can walk again?
Hello Angela. I was dxd in January 2015. I had steroids just before last Christmas. Three days by IV (went to the hospital each day - it took about an hour I think) then a four week taper in tablet form.
I found they made me very sweaty (or perspired I should say, to be lady like). Felt just slightly irritable but not nasty. They seemed to speed up the bowel and bladder (no bad thing with the former). I felt quite yucky on the higher dose tablets. I didn’t feel that they had helped at all but oddly enough I started to feel better from the beginning of April. Go figure…
My neuro advocated having them to test for ‘sub-clinical inflammation’ after a relapse at the end of Sepember. I would only have them again if I had a really dramatic effect of a relapse such as sight or walking loss (which wasn’t my story) so in your position I would have them.
My preference is always to go for IV rather than pills, as the side effects aren’t as bad - I generally feel more grotty than with IV. Common side effects with either can be problems sleeping, and a sort of metallic taste in your mouth when you take them. My head also feels fuzzy (sorry, not sure how else to describe it!).
When I have them on a drip, it takes about 30 minutes t go through, though it can be faster or slower depending on how quick they set it. Personally, I tend to feel the effects almost as soon as I finish them, though everyone’s different. Ask to be referred to a neuro physio, as that will help with the recovery (or failing that, try a simple Pilates class.
Definitely make sure you have cleared up the UTI before taking steroids. The point of steroids is to damp down your immune system, so that the inflammation which is causing the relapse symptoms is reduced. The problem with taking steroids if you have an infection though is that your immune system can’t fight the infection.
Steroids are supposed to shorten the relapse, but they don’t ‘cure’ it. This is the reason why many people refuse to take them. The side effects are sometime, for some people, just not worth the potential benefits.
If you have cleared up the UTI and you are going ahead with the steroids, my preference would always be for IV rather than oral. I think they work better, plus, it’s 3 days rather than 5, so the side effects are over a bit sooner. But I’ve not often had a choice.
The side effects for both are similar. Sleeplessness, edginess, a vile taste in your mouth, post steroids a bruised feeling (like I’ve been kicked by a horse in all my muscles). Some people are actually psychotic because of them. (A good reason for many people to avoid them!)
You can also never predict whether they will work or not. Each time can be different. They might work once, but next time not.
I’ve taken them lots of times, sometimes against my own better judgement, a kind of ‘well if I don’t, I might regret it’, type of thing (much like taking DMDs to be honest). Sometimes they’ve seemed to work and other times, they’ve made no difference.
Got the pills (oral not IV - not sad because dragging my arse up to the hospital once was bad enough, don’t want to have to do it 3 times!) Initial observations:
(1) What a palaver getting them, we had to go to 4 different pharmacies - first one (Tesco) wouldn’t hand over the pills until they had talked to my MS nurse to confirm the prescription was right, but couldn’t get through to the clinic so seemed to think that was an impasse - ho hum - next two didn’t have the right pills or not enough of them… finally sent the wife to the big Boots in town - success!
(2) My word they taste rank. Bacon wheat crunches, sugar free fruit gums, chocolate for the win. Pineapple juice at the ready but only a mildly unpleasant aftertaste so far.
MS nurse (saw the good one today rather than the usual flibbertigibbet) leads me to hope for reasonably swift return to at least semi-normality but not holding my breath!
Try swallowing the tablets with milk rather than water. They go down easier. (Take all 5 tablets together in the morning, not spaced through the day, it’ll help you sleep marginally better.)
(Oops should have said this sooner) see if you can get a prescription for Omeprazole from your GP, this helps to line your stomach in case you have any gastric type problems.
Meanwhile, try using Gaviscon liquid, it helps to line your oesophagus and your stomach.
Things to take the nasty taste away: mints, try nibbling extra strong mints through the day. Milky drinks like hot chocolate. I found coffee tastes horrible with steroids, but that’s mostly because I drink black coffee. If you’re the same, try it with milk if you can bear to. Chocolate also helps.
If you still have the nasty taste when you go to bed, (I tended not to after dinner), take a tube of toothpaste into the bedroom with you and try putting a tiny bit in your mouth as and when you need to.
On steroids, I’ve usually taken something to help me sleep. I have an ongoing prescription for Zopiclone, a sleeping pill and these help me to get to sleep. If you don’t normally have such things in the house, try getting some Nytol - not the herbal type but the one you get from a chemist. Try taking one of the ‘two a night’ tablets, it tends to be enough to get me to sleep without it affecting me the next day. (Or half of the one a night variety.)
Stirred those babies into a pot of yoghurt. Still managed to get the first one across my tongue by mistake, but learned from my beginner’s error and the yoghurt 100% smothered the taste otherwise! Better (Last night even curry for dinner didn’t shift the taste which lingered til bedtime, yuck.)
Tummy sill fine. Had a bit of a headache, but that’s a job for Mr Paracetemol so not a problem! Slept brilliantly - thank you Madame Amitriptylene, you can come again.
Feeling more positive today than I have for what feels like ages, which may just be steroid-related euphoria but feels like returning to my usual self so I’ll take it!
Good. That’s a brilliant thing, to be able to disguise the nasty side effects and enjoy the small positive of a bit of a euphoric ‘bounce’. Glad to know you’re coping well Angela.
Apart from the rage that has shown its head a couple of times today (mercifully briefly!) always followed by a few tears for good luck! Ho hum. And I fancy my walking is a very little touch better, although I could be imagining it - have made it to the toilet without having to hold on to the walls / doorframes/ radiators all the way there and back twice now
Day 4 - nothing to report - all going well and small improvements to symptoms, balance & even steadily walking a little. Super pleased with my steroid experience so far
I think Angela is on a 5 day high dose course. So when you say week 3, do you mean of a lower dose taken over a longer period, or week 3 following a high dose course?
Personally, I’ve only had high dose / short course steroids and after the last dose, I’ve had a few days of feeling rough (like a donkeys kicked me!), I’m sleeping better and if there are any remission benefits, these should hopefully start quite quickly.
Angela, you are doing amazingly well. Thanks for keeping us all abreast of the steroid course. Hopefully the remission will continue. The expectation is that steroids kick start remission and it will keep going after the end.
