jessieb 01/06/15
Last reply 3 years ago
Steroid treatment – your experience?

Hi all, I’m experiencing my first relapse since diagnosis last June, and am about to go for my first round of steroid treatment. Keen to hear about other MSers experiences with steroids – IV or oral – to help me make my decision on treatment. Any help or thoughts would be great. Thanks 🙂

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stumbler
3 years ago

@jessieb , here’s some details about the steroids:-

http://www.mstrust.org.uk/atoz/steroids.jsp

Be very aware that after a couple of days, you may feel like superwoman. This euphoric feeling doesn’t last and can be followed by the “Steroid crash”, when you come back to where you were.

The steroids prescribed are not an immediate fix. However, they will be working with your body over the course of the following 6-8 weeks to help you recover.

So be patient, and be good to yourself.

Good luck.


stumbler
3 years ago

@jessieb , and keep some mints to hand. Just in case you get the metallic taste in your mouth. 😉


jessieb
3 years ago

Thanks for the great advice @stumbler


darren
3 years ago

Hello,

Your first choice is, is this relapse bad enough for the steroids. They are very powerful drugs and can do a lot of harm to your body.
I have had 3 courses of steroids 1 iv the rest oral. The pills have a horrible taste to them so i would go for iv.
I suffer from “Avascular Necrosis” because of methylprednisolone (steroids). I only had 3 courses over 5 years and now i need a new hip (I’m only 30).
Best of luck.

D


graham100
3 years ago

Iv had both over last 5 years. And to be honest the IV was the best. Mabe because of the dose?? Good luck.


jessieb
3 years ago

thanks @darren – worth bearing in mind and asking the docs about; particularly as I am already weak in my right hip.

and thanks for your thoughts too, @graham100


joturpin
3 years ago

I’ve had both as well. With the oral steroids I had to have a strong antacid as they upset my stomach. IV were okay, except nurse really bruised my arm trying to get the drip in (was upset & stressed at the time), but I remembered to take a book while they were administered. I found drinking apple juice to take the oral steroids helped me avoid the metallic taste, and if you do opt for oral take them in the morning. First time I had them was in the evening and they gave me a burst if energy – not useful if you are trying to get to sleep! Sorry for rambling, and sorry there is no photo, only just joined to comment on this thread.


spikelives
3 years ago

I have had both oral and IV. I found out that, here in Orlando, FL at least, I could get the IV steroids in the comfort of my own home! So that was kind of cool!! As with any medication, everyone is going to react a little differently. I have had positive results with both the oral and the IV steroids. Others, like Darren above, have very negative and serious side effects. Working with your docs and looking at your past experience with heavy duty meds would be the first step in determining if steroids are right for you. And which way you should have them administered.


sarahm
3 years ago

Hi @jessieb I’ve had oral steroids twice in the last 7 months for relapses and I the recovery they have given me is amazing! They do taste pretty rank but for me they worked wonders so they work well for me! Get ready for the insomnia though… Xx


sarahm
3 years ago

I took methylprednisolone 500mg a day for 5 days.


mcgibaqt
3 years ago

Hello! Steroids made my whole body swell up have me hit flushes and made me want to eat the fridge – I was literally starving all the time. I’m told they are there to speed up the relapse but they don’t actually prevent any of the damage… I then got pregnant so my last relapse I didn’t take steroids and my relapse lasted as long as the ones with steroids did! So I haven’t taken them since. Never had a uv, had oral tablets – hubba bubba gum saved me!


jessieb
3 years ago

@joturpin @spikelives @sarahm and all of you who’ve replied – thanks so much for making me feel more prepared for tomorrow. I’ll be armed with your knowledge, my questions and something sweet and/ or minty! hoping your comments will help others like me too. 🙂 x


upstatefan
3 years ago

I had mixed experiences with it. People said it would make me feel energetic, but mostly i felt on edge and anxious…..which was a really bad combination with my two young children doing the typical things that drive parents crazy.

I also felt really bloated. Then as the drugs wore off i just felt achy and tired. It was like i was a towel than someone drenched in water, then squeezed me out and left me in a pile on the floor. I’m sure i’ll have to have them again at my next relapse, but I avoid them if at all possible.


thecuriosity
3 years ago

ive had the oral steroids, my GP prescribed the wrong dosage ones last year and i ended up having to take 12 to get the correct dosage. they were pretty foul tasting and made me gag a bit, but they did the job. I would advise taking them in the morning with plenty water, although i took them in the evening which helped my nightshifts go in.

good luck with whatever they give you, most important thing is to try and stay positive. hopefully it’ll pass quickly!


brokendancer
3 years ago

Just on day 5 of the same course as @sarahm – heartburn is a rotter and feeling a little jittery today but the day after tomorrow is the day I dread – I’ll shower late tomorrow night as I’m doubtful I’ll even want water hitting my body on Thursday – this is my third time and I react badly to the steroids BUT if you sat next to me today, I’d have a clue of what you looked like without having to turn my head! 🙂 The peripheral vision seems a bit better already.
Plus they stay in your system and keep working so it’s worth it in the end 😉
Sonia x


graham100
3 years ago

May last year I was really bad. Couldn’t walk more than a couple of steps, and my daughter was getting married July. They put me on oral steroids couple of weeks before the wedding. I walked her down the aisle. With one stick. And her hand.


CClaire
3 years ago

Steroids are a stimiulant for the body to help kick-start the recovery process. As people have said on here, they don’t change the outcome, they just begin the recovery. I have had both, I had iv in January 2004. I had a gramme a day for three days. I had been warned they may cause sleeping problems. I had my first dose on Saturday morning, went shopping that afternoon to tire myself out, went to the theatre that night had a couple of hours’ sleep,couldn’t wait to get up to go for the papers. It went on all week. I was off work all week because of the sleeping problems.on ybe Tuesday I was bothered I had an infection as I had swollen glands. I Went to see my GP. He said I had fluid retention in my head. Doh, I didn’t get it until my Mam pointed out the you have introduced something alien to e the system, fluid retention is your body’s way of fighting this thing. Of course after fluid retention, you need to expel the fluid, so you wee lots. I have had oral, but they were useless, and so tiny you can loose them easily.xx


jkfamily
3 years ago

I been on steroids for 4 months. I’ve gained 40lbs. I hate it! But that is the only thing that’s keeping me from not having headaches everyday and going permentally blind in both eyes.


chloeautumnx
3 years ago

Hello! I’ve had both and IV is definitely better if you can opt for that. The oral ones are manageable but do have a funny taste. I suffered with insomnia and had to have anti sickness but if your relapse is bad, you will do anything to ease it I’m sure. Good luck to you and stay positive xx


tracyd
3 years ago

@jessieb
I’ve had IV steroids twice. Apart from an unpleasant taste in the mouth which only happened while they were being administered and is a bit like the smell of nail varnish remover the only effect they had was to make me feel a lot better for several weeks.
Foxes glacier mints during the IV made the taste go away,

They did give me the munchies, and I developed a slight addiction to Mini Cheddars which I’m denying myself 🙂


phoenixfire92
3 years ago

I’ve had the iv the oral and the intramuscular injections over the passed 6 years.
The best one with the least side effects was the acthar gel steroid injections. There is less of a crash. It isn’t used a lot because it expensive but it is better for me and you dont have to go into the hospital to have it.

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