My experience with steroids

Hi everyone

I just wanted to share my recent experience having had a relapse and subsequent steroids. Relapse started on 4th Jan with severe vertigo upon movement of my eyes, accompanied by a strong electric shock feeling down my limbs.
Saw MS nurse on 11th Jan who prescribed (via consultant) 5 days of oral steroids (5x100mg tablets for 5 days). I took the full course 12th to 16th Jan. They seem to have done the trick with the relapse symptoms, I don’t seem to be having that now, so positive in that sense.

Side effects experienced from the steroids themselves haven’t been very nice. I’ve had strange energetic ‘up’ moods, a little like euphoria, but have also felt down and have cried a lot over nothing. I’ve had insomnia (not every night) and heartburn that I’ve treated with rennie. I’ve taken regular painkillers just as a back up really. The end of the few days of treatment gave me really bad water retention which isn’t a nice feeling and you should really try and do absolutely nothing. A little cooking made me a lot worse so try and rest. Luckily I have a wonderful husband who cooks etc.

I think the water retention is slowly subsiding but since finishing the tablets (on Monday 16th), I’ve felt completely and utterly drained. My body feels bruised all over and is still painful, presumably from the skin being stretched and full of fluid. I’ve barely got out of bed for 3 days and keep sleeping. I feel really weak and can’t really be bothered to even read much in bed.
I wanted to share what I’ve gone through (positive or not) as I feel like there are always unanswered questions when getting new drugs etc.

I’m 41, diagnosed in 2015 and I’m on Fingolimod currently but will be having an MRI in a few weeks and they will review whether to switch drugs or not.

I am more than happy for anyone to post questions about my side effects etc. This is a support forum after all!

Take care everyone
Amanda x

IMO, oral steroids are the pits. I’ve only had to take them once and the side effects were so bad that I never want to take them again. I can’t remember the dosage but it was a falling dose over two weeks. Nobody told me that I should take them with food, so the heartburn was horrendous. I was also taking potassium and a diuretic, so I didn’t have problems with water retention. I did have insomnia, only getting about two hours sleep per night. Did they work? Hubby said he thought he could see some improvement, but the relapse lasted nine months even with the steroids, so I’m not sure it was worth the grief.

Back then I wasn’t on any medication. I started Betaferon during the relapse. I’m currently on fingolimod. One capsule per day is much better for me than injections.

I have had steroids twice for MS, both times a 3-day IV course. I certainly relate to some of your experience. I am told that what I experienced as cheerful chat was, to my audience, gabbling of a weirdly hectic and rather alarming nature. The insomnia lasted for nights (for the second course, I took OTC sleeping pills). The sudden teary jags happened too, and I there was an odd combination of feeling at once slightly out-of-body and slightly beaten-up. No fluid retention problems in my case, and no gastric upset either (that will be the IV administration) and if someone gave me oral high dose steroids I would certainly want to take some prescription meds to protect my stomach because I know they can cause really bad problems.

In other words, I completely agree: they are really heavy-duty drugs, and not for the faint of heart, are they? I was aware at the time of the small risk of serious bone problems too, and if I had my time again I might have taken that one a little bit more seriously too. But there it is: high-dose steroids are powerfully effective drugs and sometimes nothing else will do and sometimes they are literally life-savers and and thank goodness they’re there when we really need them. But they are a total whole-system assault and no mistake.

I hope that you feel much better very soon and that they get on with doing their magic long after the side effects have gone.

Something I think can also be forgotten is that they can send a person’s blood glucose up the wall. They certainly did mine, and I don’t normally have problems there. Definitely something to bear in mind for people who are aware that their blood glucose control is less than wonderful.

Appreciate everyone’s comments. I forgot to mention the high blood pressure, causing headaches and I think this is also what leads to the water retention. I can totally relate to the feeling of almost out of body, the last 2 days I’ve felt really floaty, in a weak (almost hungry) way. Memory and cognition has been even worse than usual and that’s saying something!

Another thing I forgot to mention was that the nurse said I’d need 2 weeks off work to recover, which I thought was way over the top! Thankfully my sick note is until next Thursday so hopefully I’ll be better for work by then.

Another note, take early in the morning with food!

The lesson really is that steroids are brilliant for reducing the symptoms but shouldn’t be taken lightly, make sure you have recovery time afterwards.

Amanda x

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I’m not actually 41 yet! :joy: :woman_facepalming: