A few weeks ago I had an infection, and I feel healthy in terms of not being infected but it’s triggered a relapse. I’m at that exhausted, fed up point where it’s a choice between riding it out & asking for steroids. I’ve had steroids twice in the first 2 years, hated the side effects, and until this year I’ve been able to cope without. But as I sit here, having had no energy all day, wanting to rip my toes off, I’m wondering if it’s time to suck it up and ask for help.
I always say unless my mobility is comprimised i won’t use the steroids - but that’s me and i dont find they work all that well for me.
I guess it depends on your tolerance level and how badly the relapse is affecting you. Dont wait too long though as i think they are most effective when taken as soon as possible into the relapse. Hope you find an answer and the relapse passes soon. x
I think I am having a relapse at the moment and did consider steroids - only briefly however. I’ve had them a couple of times before. The first time, I had them really early, just a few days into an attack and they made a big difference. The second time, the attack had been going on longer and they improved my bladder control but didn’t make any difference to my walking, which was what I really wanted to improve.
Both times I had them, I had a three day course of IV steroids. This is a pain to do - you can’t drive yourself to and from the hospital so (for me) it means imposing on friends. They knock your immune system for six so I think you can be more vulnerable to infections - although I haven’t actually suffered from any. Also, they don’t make any difference to where you end up after the attack, in terms of how much function you lose, they just get you to the end point quicker. You just need to bear all these things in mind when you make your decision.
I’m relatively close to the hospital, on the same bus route, but could arrange a lift if needed. I’m really struggling at the moment, the fatigue and brain fog are relentless x
I had two relapses this year - one affecting the right leg and one affecting the left leg (although I had convinced myself that the left leg was due to overcompensating for the right).
I had steroids for the right leg as I could barely walk on it and was reduced to walking like a granny and it was painful. The stiffness eased off within the week thanks to the steroids but I was still walking slower than usual and my distance was reduced greatly. I was just beginning to feel improved after three months when the left leg started to play up.
My GP offered me more steroids but I refused because I wasn’t convinced it was another a relapse as it didn’t seem as severe as the right leg. The neuro confirmed he was right though (I should have known that as many of the symptoms were the same). However, even without the steroids I still recovered in the same time scale - three months.
Having said that, I can walk short distances fairly normally but then the pain and stiffness kick in and I get slower and slower. On a good day I can walk a mile before I have to get my stick out so that’s nothing like the distance I could walk a year ago but I’m still working on that. I’ve come this far by doing basic yoga stretches at home as the physio waiting list was so long I wasn’t prepared to wait!
Basically, my short answer is that it doesn’t seem to matter if you have the steroids or not. For a quick boost when things are really bad, they give you that but the cost is the awful side effects. In the long term they don’t really make a difference. I think that is the general advice I’ve received before about steroids anyway and now I’ve proven it to myself. I’ve only ever had them when my mobility is affected so I think it just confirmed to me that, between me and the medics, we have been making the right decisions.
Good luck whatever you decide. It comes down to personal choice in the end.
I’m with Laura on this one. Unless I can’t walk or can’t see (which haven’t happened so far), I feel the risks and side-effects would outweigh the advantages. There’s no evidence they improve the eventual outcome - only speed things up a bit - so I prefer to let nature take its course.
As others have said, it’s a personal choice. You don’t have to have steroids. Just depends on things like how serious the relapse is, how well you tolerate them (if you know),and how desperate you are for improvement. There is a limit to how many courses of steroids you can have (I think three in any one year period is the max), so that’s another reason I’ve never had them so far. I’ve always thought there could be a worse relapse round the corner, when I really do need them, so I don’t want to use up one of my three goes, if it’s not really essential.
I have to disagree with Sewingchick, you can drive to and from the hospital for IV steroids.
I have done this twice - a 3-day and a 5-day course - and the first time, I went on from the hospital to my office to check for an important e-mail. It did look a bit odd to be walking around with a cannula still in my wrist under a load of bandages. Now the round trip to the hospital is around 60 miles (and going in to the office brought it up to over 80).
Yes, steroids speed up recovery, and that is all they do (unless you forget the Omeprazole for two days after and then the stomach pain is terrible. Personally, I would rather have IV than oral steroids (the taste is foul, no matter how fast you take them).
