Hi all, i hope everyone is as well as can be.
I started a new relapse last Wednesday in which my right leg feels like it has bricks attached to it making it hard to walk and my right hand feels like I have pins and needles without the tingle, find it hard to hold things and keep dropping stuff and finding it tough at work as I do a lot of writing and typing and I cant hold a pen properly.
Anyway… Iv still been going to work and my nurse suggested I try iv steroids which I am happy to do but wondered how others have coped with having the IV and working between hospital visits (if you have) or havent been able to and have been off work. I dont think work are too impressed that I might be off for a while.
Whats are other peoples experiences with steroids and the time after?
Thanks in advance,
Sam x
Personally I’ve not had to juggle IV steroids and work, but I would recommend IV steroids as opposed to oral. They have always worked better for me. If you can make it work then go for it.
Sue
Thank Sue. I did have the option of oral but saw on here that people found IV more effective so taking that route. How did you feel while on the IV? I know everyone is different but trying to get a rough idea of what to expect x
IV steroids are a nuisance because you have to devote half a day to them for 3 days in a row, but oral steroids come with the risk of horrid gastric side effects. I always had the former when I was working and left the latter well alone.
If work objects to 3 half days off sick (and maybe full days if you work far from your hospital) …well, tough luck on them. They’ll get over it. If they are even half-way human, they will see that the sooner you get well, the sooner they’ll get you back doing the job they pay you for.
Don’t apologise for having MS: it isn’t your fault. It isn’t your employer’s fault either, and I share your view that it is good to minimise the disruption in the workplace where you can. But you can’t make your MS go away, and if you don’t acknowledge its presence voluntarily, it will make its presence felt without the option. It’s a case of being tough but realistic, I think. Look on it as a business problem to be managed sensibly, and encourage your employers to do the same.
Alison
Well, steroids always leave a nasty taste in the mouth, sort of metallic. They tend to make it difficult to sleep as they speed you up a bit (on the plus side, people often find themselves cleaning the house late at night as a result!). Generally IV steroids are administered over about an hour through a cannula. Some hospitals are reluctant to leave a cannula in if you’re an out patient so you may have to have a new cannula put in each day. But then IV steroids are typically 1000mg per day for 3 days rather than 500mg for 5 days for the oral type. So the immediate side effects and the time taken to administer them are minimised.
After having steroids I’ve typically described the feeling as ‘having been kicked all over’. Like your muscles are bruised.
Oral steroids have similar side effects but an additional one as they can be a bit hard on the digestive system, last time I had them it was my oesophagus that suffered the most, but I got a drug from the pharmacist to help with that. You can get a prescription from your GP to help there.
I think the relapses have been resolved a bit faster with IV rather than oral, but each time you have steroids your reaction can be different. It may be that on one occasion the relapse symptoms respond very quickly and well, on the next occasion there is no positive reaction.
Hopefully you’ll manage to get them sorted with work. And they’ll help very quickly.
Sue
Thanks both.
Work have never been interested to learn about MS so really don’t get any of it but after 3 years Im kind of used to them pleading ignorance.
I think I will see how I feel before committing to going in between appointments as the hospital is 13 miles from home and work is another 13 miles in the opposite direction meaning I will be doing 52 mile round trip for the sake of a few hours.
I had heard they can leave a nasty taste so I have been and brought some mints to help me through.
Thank you for the advice x
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Thank you! Il have a read
I had oral steroids, and have never had IV. They were prescribed by the Ophthalmology consultant, due to Optic Neuritis. I’d already been off work for 3 weeks, and although the consultant offered to sign me off, I said I wanted to go back to work. I’m lucky that my company are quite good. The MD and my manager called me into the office on my first day back (2nd day of steroids), and said how they felt the ON must have been devastating, and that if I needed anything, to just shout. This gave me an opportunity to tell them about the steroids, and that I wasn’t sure how they would affect my mood etc. They were very understanding.
I had a bit of a short fuse while on them, but ten minutes later I would be happy as a sandboy. I found it hard to sleep, and by the fourth day I fell asleep at my desk a couple of times. My colleagues, bless 'em, left me to sleep (thank goodness I didn’t snore!). The day after the steroids stopped I hurt. The only places that didn’t were my head, lower legs, and lower arms. Even my fat felt sore to the prod.
For the weird taste, I found that mints didn’t help. Someone suggested pineapple juice, and that did seem to take the taste away for a while. I have said that next time, I will just agree to be signed off, so perhaps it’d be worth you not going for the days you’re having your treatments.
Iv steroids made me feel really ill but did speed the recovery process up. There was no way I could go to work, I was off for two weeks, couldn’t taste anything but that’s a small price to pay. depends on how much of your life it’s affecting, you could be off work longer if you don’t take them but everyone reacts differently. good luck
Hello Sam. I am currently two days into a three day IV steroid treatment, the third being in a couple of hours. As others have said, the IV treatment generally works quickly (although don’t take that for granted - everyone’s different) with some effect being noticeable within hours. The nasty metallic-type taste kicks in quickly but abates overnight and I certainly haven’t been sleeping as well but as I’m off work that’s not really an issue. I certainly don’t feel any ill effects from the treatment and if my appointments were early in the day and I was able to drive, I’d still be at work.
As far as your work goes, I suggest they will have to put up with your absence on this occasion, certainly until you know how you react to the treatment. Most people have nothing but positive feedback so take that as some encouragement.
Take care, try not to worry and fingers crossed you’re back to normal (whatever that is) very soon.
Anna x
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Thank you everyone. I know it sounds stupid but the main thing I am worried about is doing the color run! Iv been looking forward to it for months and wanted to raise money for the ms society but by the sounds of it its going to be a no go! X
I’m not sure if I’m the only one but i had treatment and worked. I also had to travel a fair distance (23 miles) to my hospital for my iv steroids, but that’s another story! I found sucking polos and fruit pastels worked a treat with the taste 
I was able to take the time off work for my apts and within a week had made my time up - I didn’t even think about taking it as sick. I was given tablets to combat the bad stomach and all was fine. I’d say give it a go, depending on the severity of your relapse you can always phone in sick if it all gets too much. Good luck x