Positive steroid experience

Hi all,

I just wanted to post about my recent experience starting methylprednisolone for 5 days to treat my first diagnosed relapse.

I was very worried about taking it as I’d read so many negative things about side effects, but it was actually fine for me. My relapse has been ongoing for almost 9 months and mostly affected my left leg and foot while walking. I actually felt the best I had in months while on the steroids! I struggled a bit with sleep but I have two children under 4 so that wasn’t anything I hadn’t dealt with before. I also continued to breastfeed my 1 year old while on then after comprehensive advice from UKDILAS (specialist NHS pharmacy service) who reassured me it was safe (I only fed 12 hours after taking the tablets but a shorter gap is also safe).

Once finishing the steroids I felt a bit down, and had a bit of a dodgy tummy for a day or so but nothing too bad. The dreaded withdrawal didn’t really happen. My symptoms came back quite quickly after finishing them, which I was disappointed about, and two weeks later were still there with a very slight improvement. Week 3 I started to see some more improvements and I’m now in week 4 and I’m feeling much better with some symptoms improving a lot.

All in all I’m pleased I took them and I feel like it is speeding up my recovery from this relapse. If anyone reading this is worried about taking steroids, please be reassured that it’s not a certainty that you will feel awful and you may in fact feel really good like I did! Appreciate it is different for everyone but I struggled to find positive stories before I took them and wanted to share my experience.

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Thank you for sharing this. My steroid experiences have been good too: I have never regretted taking them but once or twice have wished I had started sooner.

I hope that your recovery proceeds apace.

Thanks for sharing. I’ve never been on steroids but your experience is useful to know

methylprednisolone is issued as a pre-med before ocrelizumab infusions. I get a 3 day “holiday” from some of my symptoms following the methylprednisolone. It’s definitely that rather than the active drug too. Unfortunately they won’t prescribe it as a long term solution because of other side effects and my aches & pains creep back in…