IV steroids, what to expect?

[VikingKitty]

hello,

i am going for my very first round of IV steroids tomorrow. what can i expect? this flare has gotten so bad that i can barely write this because of the nystygmas..forgive bad spelling...

[KatieAgain]

I can only relate my experience for you. First off, don't worry, it is not a big deal for most. We tend to post a lot of our negative experiences vs. the positive ones, and that is normal, because this is a support board.

You will probably have a metal taste in your mouth during the course of steroids. Lemon or Cinnamon Candies can help this. You might experience hyperness during the course of steroids...many people comment on cleaning up the house in the middle of the night. You might experience insomnia...I don't, but a lot of people do. And lastly, the Infusion itself made me a little high. So, it might be wise to have someone to drive you home.

I think the most important thing about IV Steroids is to have an oral taper os steroids at the end of infusions. Ask your doc about that.

I think you will find you are going to feel a lot better soon. No Worries.

[VikingKitty]

Thanks Katieagain --

i just got discharged from the hospital yesterday and I am able to see a bit to get online again (for little bits at a time) so long as the screen is at 180% so I can see - I faired pretty well actually...no insomina..I was actually tired?? go figure I had very little increase in appetite..I 'm usually always hungry anyway..no nervousness..I did have some chest tightness and palpitations...I started the taper this morning...i am getting relief slowly from this flare that is apparently on my brainstem according to the neurologist. i had double vision...and nystagmus...i couldn't read or watch tv while in the hospital..it's still pretty difficult but am able to use my eyes a little bit and have to rest them often..not able to drive or get back to work just yet. i did gain a couple of pounds ..probably water retention... not too much puffiness elsewhere.

anyway, that was my experience with the IV (1 gram per day) infusion...now to get on Copaxone...it is in the works at the dr.'s office..will have nurse come out to train me on injections...i wish I would have gone on the DMD's prior to this...this is my 7th flare ...all others were more sensory...this was motor....loosing control of your sight sucks....this is worse than the two bouts of ON...at least then I had one good eye to look out of and it stayed still...no jerking

[KatieAgain]

Glad to hear you are on the mend. I agree, ON does suck. Nothing like a good flare to get you on a DMD. I just started back up on one a few weeks back myself.

The weight is indeed primarily water retention...you will lose it once you get off the taper.

[Toomnyhats]

Viking Kitty, an uncommon (dare I say VERY uncommon?) reaction to IVSM is better sleep & loss of appetite.

The one time I had IVSM this was my reaction. Just part of my body's unusual reaction to drugs ...

[zilphia01]

unusual? or typical?

Isn't that the ultimate question and pondering of MS?

I had a different experience from those listed, so maybe mine is the atypical experience and you will not have this happen.

I felt like I could easily BUILD A HOUSE. I had SO SO SO MUCH energy, and did I ever talk ALOT. I am a teacher, so when I had to go in to do sub plans it had to be at 5 am when there were no students there. I could not shut up.

I made supper at 430 in the morning. I made cookies and muffins and bread for any adult I would be interacting with that day. The infusion nurses sure knew who I was.

It was very hard to sleep. I also found I had no pain. I could even kneel at church.

As long as I could handle the energy, and my family did not all leave me in frustration, there were no physical issues except insomnia and water weight gain.

I did do the taper.

good luck. My suggestion is to know this therapy is a primary part of treatment, and to stay in tune with your self, and in contact with your physician. Ask to be treated for symptoms that are ones you cannot handle.