Forum

Scared of IV steroids

Hi guys,

I am currently having a relapse and the MS Nurse has booked me in for 11am on mon, tues and wed for IV steroids so it means going into work (I am a school teacher and start back on monday) then to the hospital and then back to work. The nurse said they are gonna leave the cannula in. She said I could ask to have it put into the inner elbow instead of back of hand if I want it hidden, but wouldn’t it be uncomfortable having it put in at a joint that bends?

I’m petrified about the infusion though. The nurse today told me that I may get insomnia, facial flushing, emotional etc so am worried about how I will cope at work next week, not just the days of the infusion but the aftermath too :frowning: I have had oral steroids once before but only 200mg tablets twice a day whereas this will be more and all in one go.

I feel sick with worry.

X

hi

i nave never had iv steroids-only oral but cant u get the days off work til u have the steroids? i am aware that will not be simple but as u have no idea how u are going to react would planned time off be better than having to cover u at last min? if u ever need them again u will have some idea of how u may be?

lots of folk have had iv steroids-the will be more helpful that me.

try not to worry,easier said than done i know.

take care.

ellie x

I’m with Ellie - better to take some time off if at all possible. You might have to wait, plus the infusion can take a couple of hours, then you have to get back to work so you might not actually be there for very long anyway, plus you’ll have to deal with any side effects while there. For example, not everyone gets it, but IV steroids give me the most appalling taste which, unless I’m sucking Murray Mints literally non stop, makes me horribly nauseous. The thought of trying to teach with that going on, well, I wouldn’t even attempt it!

I got round the insomnia by getting some sleeping pills from my GP - might be worth asking if you really can’t take time off.

You don’t need to have the canula left in btw. They can start fresh each day. It’s more needles, but less hassle than the canula digging in (it was for me anyway).

Remember that everyone’s different - some people find steroids a breeze. You might be lucky and be in that group :slight_smile:

Karen x

Hi there,

I’m not suprised you feel sick with worry. I received a 5 day course of intravenous steroids back in April. You have no idea how you will react, as it is an extremely high dose ( I had 1000mg per day for five days). For me, the worst side effect (apart from the insomnia and flushing) was the fluid retention. I literally became a human water balloon. I had taken plenty of loose fitting comfortable clothes with me (while admitted for further neurological testing) to hospital including baggy pyjama bottoms, which by day three had become completely skin tight due to all the extra fluid. I didn’t fit any of my regular clothes for a few days and felt so uncomforable and heavy, as if I was dragging bricks around in my trousers every time I went for a walk. I was told that my reaction, regarding the fluid retention had been an extreme one and that they might opt for 3 days next time instead of five. Believe me, the last thing I could have done was go to work. I really hope you are able to take some time off, as this is your first time with the intravenous steroids and it would be better to find out in the comfort of your own home this time how you will react. As said above everyone’s different and you could be fine but who’s to know?

Hi Whitey, I agree wholeheartedly with the above posts about taking some time off. I’ve only had oral steroids but wouldn’t have wanted to go to work when I was taking them because of the side effects (dizzyness/spaced out feeling).

I presume that IV ones also temporarily lower the immune system (I was told to avoid anyone with measles/shingles), so going into a class full of kids is probably not the best thing if you want to minimise the risk of catching something and having to take more time off.

Best to put your feet up and rest hun. Hope you feel better soon.

Mags xx

Hi all, I don’t think I will be able to get the time off now :frowning: Plus have already emailed my personnel manager telling her when my appointments are and when I will be out of work roughly, obviously don’t know exactly as don’t know how long it will take.

If I feel awful on monday I guess I will have to have tues and wed off and maybe the rest of the week if needed. But I don’t think work will be happy about it.

I feel really dizzy and nauseous atm and my heart keeps thumping in my chest. Is that part of the relapse or just anxiety from everything that’s going on.

Thanks for your posts guys, I appreciate honest answers and would welcome any more :slight_smile: xx

Although it may be difficult, I think it the wisest thing to take time off. I’ve had IV steroids three times, twice whilst in hospital and once going in like you for three consecutive days. I was in the lucky position of being able to just come home and it’s by far the best thing.

I was a bit wakeful but was given something to help me sleep and I did get a metallic taste in my mouth but I felt really rough for some time afterwards and there is no way I would have been able to work.

I hope that your manager is understanding, surely it’s better to get a supply teacher in for everyones sakes.

I wish you well, I’m sure you will be okay and I’m guessing some of the symptoms you are describing at the moment are anxiety related. I did a visualisation thing when I was having mine, making the steroids liquid light that was pulsing through my body doing good rather than anything bad! After all they are there to help ultimately.

Sending you positive thoughts, love and sunshine

Trudie x

Hi. Please try not to worry about iv steroids. I had them for three days about six weeks ago. I wasn’t able to sleep while I was on them. But somehow I seemed to manage. The only side effects I had was acne on my forehead and down the side of my face. It has cleared up now. They definitely helped with fatigue and bladder problems. Hope you have a similar positive experience.

Mary

Hi, I think you need to take time off to have the IV…Your health is so important, and work will just have to understand.

Jan

Hey, thanks for all your comments. I think I will go to work monday morning and tell personnel that depending on how it goes and how I feel, I may not be fit to work. Then will play it by ear. Fingers crossed it goes ok. Feel sick just thinking about it :frowning: xx

Hello there,

As someone who has been there I would personally recommend that you need to take time off if you are in a position that your healthcare professionals feel you need an infusion. I don’t know if you have told your employers about your condition but if you choose to you are protected by law that they can not discriminate against you.

You may feel nothing at all after your infusions and have no reactions what so ever but I think you should be kind to your self and not try and work during the process.

Wishing you all the best.

Paul

HI Paul,

Thanks for your message. My employer is aware that I have MS, I was medically suspended for 2 weeks in June as I fell at work twice during relapse due to weakness in my leg and it became a health and safety issue.

It is an INSET day tomorrow so no children will be in school so I will see how I feel going back to work after the first infusion and if i feel too poorly I will have to have tues and weds off at least. Am gonna see how things go. I guess work will probably understand but I hate having time off!

Thanks for your advice x

Try not to worry too much and just take one step at a time. I have only ever had oral steroids and have a feeling Im gonna need them again as my symptoms have gone worse. Thinking I might see emergency GP today. I was tired and had a yak taste in and was a bit emotional however if you just keep remembering it’s the steroids causing this and it won’t be forever that might help. Good Luck hun and your the priority not work x

Thanks Lisalou. Well, it’s near approaching now :-s First one is at 11am tomorrow so please be thinking of me, am terrified of the side effects :frowning: Am wondering if all this worry is actually worth it and i’m only still going cos i’m too stubborn to bail out now! xx

Hiya whitey Wishing you all the luck in the world for tomorrow, I will be thinking of you xx I do honestly think you will be fine though. I had my third lot of IV 6 weeks ago ( first 2 lots were 13 & 10 years ago) mine was a positive experience, but I wasn’t sure iif there were any side effects or weather it was just the severe relapse itself… I did get a flushed face, I looked like I’d been for a few sun bed sessions lol, and I struggled to sleep for a few nights the following week, but I put that down to my Brian working overtime with worry ! I do really think you are being a bit optimistic if you think you can go to work tues & weds, but best just to play it 1 day at a time. Remember that your health comes before work… I wish I could take my own advise though, I’m going back to work tomorrow after 10 weeks off, simply because of money and worrying that ill loose my job :-((((. Remember to take some mints or chewing gum with you. Take care & good luck, let us know how you get on. Jo xxx

Thanks Jo :slight_smile:

Well I have had my first lot of steroids. Got to the hospital at 11am and they couldnt find my notes. An hour later my notes arrived and they put the cannula in. Then had obs done and heart rate was 125, Blood pressure: 140/92, i was petrified clearly! The nurse checked with the doc then they decided to do an ECG cos the readings were high. By the time I got my IV on the go it was after 4pm! Ridiculous! So didnt go back to work afterwards as it was too late!

Have a metallic taste in mouth now even though have eaten dinner. Hand is sore as cannula is in an awkward place in my hand and my heart is racing. Have lots of energy atm but feeling pretty low.

Will see what tomorrow’s session brings. Am teaching in the morning before going to hospital so will see how I cope. Personnel manager has been great though so if i need to go home at all due to feeling poorly then I’m sure it will be ok.

Thanks for all the support everyone, you don’t realise how it is helping me get through this xx

Hey How are you? First day back for me went well but I can’t imagine how I would have been in your position. Please make sure you listen to your body and take it steady. School will be there. Keeping you healthy is top priority. Are you primary or secondary? I’m secondary RE- that keeps me sane- I am in total awe of all primary teachers! Hehehe! X

Hey How are you? First day back for me went well but I can’t imagine how I would have been in your position. Please make sure you listen to your body and take it steady. School will be there. Keeping you healthy is top priority. Are you primary or secondary? I’m secondary RE- that keeps me sane- I am in total awe of all primary teachers! Hehehe! X

Hey, I’m secondary too- I teach Science mostly and a bit of psychology. feeling ok atm, pretty energetic actually but am waiting for the big crash over the next few days so not being too optimistic. Think am gonna struggle sleeping tonight though, my heart wont stop racing! Hope your first day back was good today :slight_smile: Although I was only in for 2 hours this morning, it was INSET day so no kids! Dreading tomorrow when I teach my first lesson in ages! xx

Day two of three of IV steroids. Struggled at work after going to the hospital. Got piled on with more work at one point and broke down. So emotional at the mo, it’s ridiculous! And didn’t sleep a wink last night :frowning:

Last day of steroids tomorrow then praying i don’t “crash” like I have heard can happen. Does anyone have any knowledge of this?

Thanks xx