steroids

New diagnosis and before diagnosis
1

Hi,

I just wondering if anyone has had any experience with steroids. I feel that I am the start of or in the middle of a new relapse.

What is the dosage? Does anyone recommend/not recommend them?

Thanks,

Adrian

2

Hi I have only had them once for a drop foot but didnt think they helped as it was probably too late into relapse…so would only take them again if I had a bad one as I had a kidney inf after taking them which neuro thought was prob caused with the steroids but everyone is different as some people swear by them!..Good Luck and hope they help if you decide to take them…Emma

3

Thanks Emma. Who do I get them from; neurologist, ms nurse or GP? Can you remember what dosage you took?

Thanks,

Adrian

4

Hi I got them from neuro but MS nurse can also prescribe them…I had 500 mg over 5 days! Emma

5

Thanks. Wow, that’s a massive amount. Thanks.

6

Oral - 500mg over 5 days is normal.

IV - 500m mg over 3 or 5 days is normal.

Starting point is the MS Nurse - last time (oral) the nurse got onto the GP and “asked” him to issue the script.

Geoff

7

Thanks Geoff. Did it work for you?

Adrian

8

Hi Adrian I had IV over three days but wouldn’t have them again. They didn’t help me at all but they do for others. I think that if you haven’t had them before you won’t know until you try. Top tip…take a flask of strong coffe or fresh orange juice…they leave a horrible metallic taste in your mouth and either of these help counteract this. I also had a tube of mints. Be prepared for insomnia whilst having them too. Apparantly this is a very common side effect. I slept for 10 mins each night after each day!! Not fun. Also, I got terrible acne for a few days afterwards and a blinding, raging fury, so hide sharp objects around the house!!! And buy some spot cream!! Finally, prepare your better half for your incessant, manic babbling. I had verbal diarrhoea afterwards too!! Catherine

9

Sounds like a lot of fun Cathreine. I’ve just been feeling that a relapse is about to come on or is on me for the last few weeks. My balance has been bad for several weeks and has been getting worse over the last few days. I hate this symptom. I feel a lot better today. I have upped my d3 intake to 5000iu and I had salmon last night which always makes me feel a lot better. Cognitively and symptomatically. I think I have been winding myself up about taking Rebif in the New Year and a lot of other things. Thanks for you feedback has been really helpful. I will talk to my MS nurse on Monday, I think.

I have an aunty Cath who has constant verbal diarrhea. You’re not related are you? Wonderful woman, love her to bits but, man, can she talk. :slight_smile:

Have a good day.

Adrian

10

hi adrian

i had a course of iv steroids 4 years ago. i wasnt coping with the fatigue, wasnt eating and my walking was rubbish.

the steroids made me feel strong and hungry!

and talkative, so much so that with the insomnia i would drive everyone mad through the night.

also like catherine i had the roid rage. common symptom for coming down off steroids.

i asked for a bone density scan afterwards because i had read lots of posts on here. my gp referred me and it turns out that i’m osteopaenic. it seems that my spine isnt strong.

good luck with whatever you decide

carole x

11

Hello, As others have mentioned, until you try them, you really don’t know the effect that they will have on you. Personally I hate them. Had four lots over 18 months & have made it very clear that I will not take them again unless floored (literally). They haven’t been beneficial the last couple of occasions, & make me feel so ill, together with the roid rage & mood swings. I am ridiculously sensitive to drugs though. Good luck & don’t worry too much about starting Rebif. Anne

12

Thanks. Doesn’t sound too great does it. I’ll talk to the MS nurse I think. I’ll try not to worry about taking Rebif.

Thanks. Really helpful.

Adrian.

p.s. eat salmon, makes me feel a lot better. :slight_smile:

13

Hi all, I’m new to this website but I was diagnosed in June and have had 4 relapses of optic neuritis since. I am currently on 500mg of steroids a day today is my last day thank god. I imagine they work for some but I feel rubbish not only can I not see because of the optic neuritis I now have stomach cramps constant sickness bloating terrible insomnia an awful taste in my mouth. Also my mood is so down, crying and fed up. I hope they work soon. I would say maybe give it a shot because you never know how you will take to them. I’m going to the GP tomorrow for sleeping tabs and to get my B12 and Vit D levels checked. Take care

14

Hi Laura,

Do you take vit d3? I have just whacked mine up to 5000iu. I feel a lot better. I am going to take a large dose tomorrow. See how that goes. I also take 100mcg B12.

This is quite interesting. Cosmetic Surgery & Plastic Surgery Specialists | Flawless

I think that there migh be a slight correlation. Looking at one of the articles, they say that they don’t know how beta interferons work but they infer that it may work as it elevates the amount of Vitamin d in the body. Interesting.

I was thinking of taking steroids but I don’t think I will now.

Adrian