I am just looking for some advice. My Consultant wants me to take steroids to see if we can try and get any part of my very long relapse to calm down a little.
He has however left it up to my choice if I go for IV or oral. He says there is no evidence that one route is better than the other but I wanted to see if you had the choice what would you go for?
I always go for IV because oral high-dose steroids can be very hard on the stomach, and I would rather not risk that if I could help it.
IV is more of a faff because you have to trek up to the hospital three days in a row. Also, they are (I expect) more expensive for the NHS on account of more hospital/staff time, but if they are offering you that option I would go for it.
Good luck with whichever ones you go for.
i had iv steroids they worked really well.
i think they induced a mild psychosis though.
i really let rip at my husband but fortunately he was strong enough to let it go.
i will never take steroids again because they don’t do the bones any favours.
i had a bone density scan and it showed areas of osteopaenia on my spine.
How long ago did you suffer your relapse?
I was treated many months after my relapse with iv steroids
I had 2 days of iv
Didn’t calm my spine inflammation one bit
Was told a few weeks ago by a neurologist that they were of no use to me as too long had passed since relapse
Thank you, it’s a real case of trying to weigh things up but the point about being hard on the stomach is a good one for me to keep in mind.
I’m sorry to hear not only about the mild psychosis but also the bone density scan.
I realise that they are not without their side effects, and I know for that very reason my trust limits you to only two courses in a year.
I had them with an episode of CIS 15 years ago and thankfully the only side effect was lack of sleep and inability to sit still. I did say I would never take them again because of how shitty I felt but that was nothing compared to how I’m feeling now
I’m on week 11 now, its my first relapse and I was diagnosed very quickly due to a previous CIS and previous neuro consultations that said if I was to have any further it would be MS. On my last appointment I had reported some relief in symptoms from the start of the relapse so he didn’t go for steroids then.
I know I have two fairly significant lesions on my thoracic which are causing all the remaining symptoms.,
Was it a different neuro who prescribed you the steroids than the one who told you they were of no use?
Yes it was a different Neuro It amazed me when he said the Iv’s were of no use My relapse is now in its 5th month I was put on Tecfidera two months ago But am now being switched to Lemtrada
I personally don’t feel that steroids late on in a relapse have been of much help to me in the past. But what you have to keep in mind with steroids, both IV and oral is that each time you take them you can have a different response, and also, just like most things related to MS, everyone’s experience is different.
So you could have IV steroids now that do in fact bring your relapse to a slightly quicker resolution, or that don’t do a damn thing except make you a bit edgy and sleep deprived for a few days. And the next time you have any kind of steroids and have a completely different experience.
The thing to remember though is that steroids are not a cure for a relapse, the best they can do is shorten its course. And 11 weeks into a relapse, you may decide that’s not sufficient cause to take them. Or you might think that it’s worth a go.
What your next decision will be of course is which DMD to take! Assuming you are offered a wide choice, get something started as soon as you can.
Thank you for responding. That is crazy though that one says completely different than another! Good luck with the switch of meds.
How late on would you be classing as late if you don’t mind me asking? When I used steroids many moons ago for a CIS they didn’t have any effect at all apart from sending me jittery and sleep deprived and generally feeling crap and swearing I wouldn’t take them again.
Roll on this though and the weeks of continued symptoms remain (first significant relapse causing real issues with left side) I have had improvements from when the first issues hit and thankfully I’m mainly back on my feet (though if I stay on them too long they go completely numb!) but I’ve been left with numbness in my left torso and left leg and my foot constantly feels like I’m wearing I’ll fitting shoes.
I just feel at this point anything might be worth trying even if I managed to shave a few weeks off this then it would be worth it. I’ve no idea how long a relapse can last for though and I’m struggling, even though I can see there have been improvements to see an end at all to this feeling.
The other side of me is thinking, well maybe this is how I’m going to be forever now…
as for dmds, that is a total mind field!
1 - Read what Sue said (Saves me repeating it).
2 - If you do not get steroids within 2 weeks of the start of a relapse, do not expect them to work.
3 - IV steroids avoid that horrible taste. with IV, you only need one dose of Omeprazole to avoid stomach cramps, but wit oral, you need about 14 days.
So from reading that, I’m going with your views of only using them within 2 weeks? What about those that are first presentation and steroids are used on diagnosis?
Are you on a DMD yet? If not, and you are considering lemtrada, it might be worth checking with your nurse that you can have IV steroids now and then have them again when you receive Lem. I had 5 days tablets for my first relapse in March and there was no question of this being an issue for my receiving 3 days IV steroids in August when I received Lem. However, on the Lem Facebook group people have commented that they have had to wait for Lem or haven’t been able to receive steroids for a relapse due to the risk of receiving too many steroids in a short time frame.
Neither the tablet form steroids nor the IV steroids received with my Lem caused me any issues at all - but both tastes disgusting! This made more sense with the tablets - odd to be able to taste something so strongly that is injected via the wrist!
My own experience suggests ‘better late than never’.
The last couple of times I had IV steroids, I was several months into a rolling series of relapses. After months of putting up with the individual elements of these as they peaked and receded, I was finally hit with something too disabling to cope with and so - finally - took the neuro’s advice to go for steroids. In both cases, the steroids did the job and brought months of waves of relapse to an end.
I am sorry to say, however, that both those relapses left a good deal of permanent damage. I should have gone for steroids far, far sooner. But they did, as I say, finally put out the fires that had been flaring for months, and who knows what worse damage would have occurred without them?
That, for what it is worth, has been my experience. I wish I had gone for steroids far sooner, but late was better than never.