Hi, I was diagnosed two and a half years ago after a second bout of optic neuritis. I was discharged at diagnosis and since then have been living with fatigue and an overactive bladder but little else. I’ve had some new symptoms over the last month - dizzyness, heavy legs, weak arms and total exhaustion. I’m on my second week off work.
I have made contact with an MS nurse and she wants me to talk to my doctor about a course of steroids - 500mg of medrone for five days. This should have been started early on in the relapse so is a bit late and comes with a range of side effects. I don’t know whether to give it a go or wait until I get better naturally. When I had optic neuritis I was advised by my neurologists at the time to avoid them if possible. Does anyone have any advice? Thank you!
Sorry I don’t know other than I have been offered them in the past but always turned them down.
I had alot of them years ago for uncontrolled asthma but at lower doses and said never again. That said alot of people find them very beneficial.
If you have never had them then you don’t know your bodies response to make an informed choice.Have you considered try them this time so you know for in the future?
Hi Wendy I have taken them a couple times this year, I experienced a minor relapse back late July, I took the steroids after 1-2 weeks of the symptoms starting and they did work a treat making we fully recover within 4-5 weeks. I was then officially dx with rrms late sep and am currently suffering from a major relapse, I was offered and took the steroids again after just 1-2 was from the start of this relapse and am still waiting for results (am now in wk 5 after taking them). The first time I took them I had a couple days feeling unwell just like a general cold mild flu symptoms followed by acne for a week. The second time I took them, all I experienced as the acne again for about a week - felt like I was a teenager again! But if they work and get me better then I guess I can live with acne for a week! I guess everyone is different as far as side effects go, but I felt it was worth a try if they could make me better! Hope that helps. Liana
This is probably not a piece of balanced advice as I am not a fan of steroids, but I would say don’t take them unless you really have to. My main reason for this is that if your MS ever warrants having Tysabri, having taken steroids at any point increases the chances of you getting PML.
Also, steroids speed up time to remission, but they don’t change the outcome - the symptoms you would have been left with without steroids are the same as with steroids. Obviously it’s much better to have a shorter relapse if being off work is a major issue or if the relapse is a bad one, but if neither of these are the case, I can’t see that they are necessary.
But it’s a personal decision and, as I’ve already said, I’m biased! (Steroids don’t work for me and the last lot I had permanently screwed up my digestive system. They do work brilliantly for a lot of people though.)
Thank you Karen; I was hoping you might have some advice! I think this is probably a minor relapse judging by other posts I’ve read - and I work for a County Council and they are being very understanding - all in all I’m probably going to decline but not 100% sure yet.
I think everyone gets on with steroids differently. Personally i have a love/hate relationship with them. I hate taking them, I hate the side effects, however I do love them because for me they make me feel so much better. I know they don’t affect my long term disability or outcome, but they get me through my relapses, and for me that’s enough. I have always tried the 500mg methylprednisilone before, and it clears things up for a few days then my symptoms come back, so I have always had to have 6-8 weeks of long term steroids (weaning the dosage down) and that has really helped me. My first lesion isn’t even visible on MRI anymore, it has completely remyelinated. I am sure that wasn’t just down to the steroids, but I am glad I have taken them. I think everyone is different, so just do what feels right for you. I know you don’t always know what that is to start with, but I just thought I’d put another side on it.
I think everyone gets on with steroids differently. Personally i have a love/hate relationship with them. I hate taking them, I hate the side effects, however I do love them because for me they make me feel so much better. I know they don’t affect my long term disability or outcome, but they get me through my relapses, and for me that’s enough. I have always tried the 500mg methylprednisilone before, and it clears things up for a few days then my symptoms come back, so I have always had to have 6-8 weeks of long term steroids (weaning the dosage down) and that has really helped me. My first lesion isn’t even visible on MRI anymore, it has completely remyelinated. I am sure that wasn’t just down to the steroids, but I am glad I have taken them. I think everyone is different, so just do what feels right for you. I know you don’t always know what that is to start with, but I just thought I’d put another side on it.
Thanks Mrs H. Insomnia is the last thing I need if I’m going to get myself back on my feet ready to return to work - I think it has to be a “no thanks” this time.
