Going for my first steroid infusion
 

I am starting my first 3 day course of steroids tomorrow and wondering what to expect?

I have not been right since the break in my refills for my Ampyra and though better I'm still sliding my feet rather than picking them up. I now have a fabulous squeezing with severe left side pain around my ribs which upon examining my neuro noticed had a significant lump under them.

Went to my GP who ordered x-rays that showed a sizable mass under my left ribs and am getting referred for a CT.

Meanwhile the pain has been intolerable and now includes a squeezing of my pelvis and as of this morning blind spots in my vision on the left side.

Hope the steroids help with all this tightness and pain and that the CT doesn't amount to much.

this sounds concerning kerOpi. i'm glad your drs are on it and ordering tests.
i hope the roids work and you start feeling better.

let us know how you are.

Feeling a bit strange after the first infusion. My vision seems extra crisp, all the colors seem more dramatic and sharper.

Extra shakey/spaszy but that's to be expected.

Tried my first Gabapentin last night, slept great!! Has worn off and starting to feel all the stinging pain again.

I'll keep you posted how the next few days go.

The worst part so far is that I have the strangest taste in my mouth, it's making everything bitter. The nurse said it was normal and not sure how long it will take to go away.

Glad there has been some help so far!

Yes that taste is awful! For me it lasted a couple hours and the only way I could get rid of it was to suck on a Halls menthol cough drops, several right in a row until it wore off.

Hope everything turns out good for you! Lots of :hug: while you're waiting.

Hello,
I am on day 3 of my first 5 day course and I have the metal taste in my mouth too. Very flushed feeling and no appetite
Hang in there
Chris

You hang in there too Rider..:hug:

Going for day 3 today. So far the horrible taste in my mouth is the most frustrating, everything tastes weird. Then there's the insomnia, I already wake up 3-5 times a night and that's about doubled. Then there was the spinal migraine it triggered.

But on the positive side I am walking so well I'm only using my cane when I go outside! I'm hoping the affect continues for a while and I get this awesome walking for a while. Sliding your feet instead of picking them up is so frustrating. :grouphug:

i hope that each day that does by you will feel better and better.

I hope you continue to improve. Lemon drops and other hard candy helps with the mettalic like taste in your mouth. I also drink lemon water and/or sucked on a lemon slice and it helps.

Please let us know how the rest of your testing goes.:hug:

I'm feeling great but as of today, first day without the infusion I am having an increased heart rate when I do anything other that sit or lay down.

Is this a withdrawal symptom? I did not get a pill taper.

Just got home from the ER. Resting heart rate still hovering around a 100 bpm. Get to follow up with a cardiologist. When it rains it pours.

Oh dear, I hope all is all right Keropi. Dang steroids..:(. Rest easy and let us
know how you are in the morning. Deep breaths.:hug:

ER doc didn't think it was the steroids. My potassium was low but not low enough to cause the tachycardia in his opinion. He thinks I have SVT.
I emailed my GP to ask if I need to see him first or just get the cardiologist referral.
Hubby took the day off work and I'm couch/bed bound for the day. When I woke up my heart rate was back down to 70 bpm and jumped to 90 after doing a few stretches.
Lots of fluids, so much I'm shaking from the cold feeling.

Hi ker0pi,

Did your Neurologist not tell you that steroids deplete Potassium levels and you should be eating things high in potassium?

The side effects are numerous for steroid use and the ER Doctor may very well be wrong. You may be experiencing side effects of IVSM. Please speak with your Neurologist.

Information about Methylprednisolone:
http://www.drugs.com/sfx/methylpredn...e-effects.html

My very first Neuro gave me prescription Vit K/potassium, with my IVSM.
I loved her. The Neuro who took her place after she retired, didn't think
it or the taper was necessary..:rolleyes::mad: She was the head of Neurology @ the
hospital, he was an OD Neuro. Ya get what ya pay for, I guess.

No she didn't explain the potassium depletion. It was the on call neuro who told me to go to the ER and get my heart checked. So far today my heart rate has been fine. My son cut his hand with an Exact-O blade while he and my dh were working on models.
I was asleep and had to go from zero to emergency in no time getting him to the ER and my heart rate never went above 100. It's the dizziness that's kicking my but right now. Every time I stand I feel like I'm going to fall over.

If I do this again I'm going to insist on a tapper, I've heard that might help.

I felt great during the 3 days. I'm really bummed about how I feel now.

Ker0pi
Let me know how you come off I didn't get a taper either
Good luck my new friend I hope it works out ok for you
Chris

So far day 3 without taper I'm a bit dizzy. I slept all day during day 2. I'll keep ya posted. Good luck to you coming off of your IVSM. Let me know what you experience. It's always good to hear others experience, it helps you feel less crazy.

i'm sorry you've had these problems.
i hope you feel better and more stable in the coming days.

Day 4 I feel much better. Still not sleeping but I think that is mostly my apena, I'm waiting on my sleep study results so I can get a CPAP machine.

My GP emailed my back and said it was most likely the steroids that caused my tachycardia and to monitor my heart rate for the week. Unless I have a spike again I don't need to see a cardiologist. So far the only spike was on the Elliptical machine during PT yesterday and that was expected.

Kerp,
Day 3 here I am dizzy and my knees are absolutely killing me. Like a huge arthritis ache. I feel a little off but I also got new glasses so I don't know if that is why I'm dizzy. All things considered I thought I would feel worse I am able to work so it's all good
Chris