Steroid infusions: So tomorrow is my first... - My MSAA Community

My MSAA Community

9,019 members20,711 posts

Steroid infusions

Jeremyhess1980 profile image
25 Replies

So tomorrow is my first day of steroid infusions. What can I expect? Should I eat before I go? And what will I feel like after?

Anything else I should know?

This is my first time and not sure what to expect just trying to get some information pretty nervous about it

Thanks

Written by
Jeremyhess1980 profile image
Jeremyhess1980
To view profiles and participate in discussions please or .
25 Replies
rjoneslaw profile image
rjoneslaw

Do eat. I would suggest you eat some kind of candy afterwards so you don’t have a metallic taste in your mouth. That’s what I was told when I did mine. Other than that you should be good.

MaryMargaret1966 profile image
MaryMargaret1966

Eat & drink water. I always know they got a good vein, when I get that metallic taste in my mouth. For me, for a few days after my taste buds are off. Afterwards, I usually get a really good day then a down day. I get wired after steroid treatments. If you feel that, becareful not to do to much, just cause you feel good. Still get rest. Again, meds effect everyone differently. Good luck!

Iona60 profile image
Iona60

Unless they told you not to eat, I would eat first. Each time I've had them, it takes two to three hours. The infusion part is easy. Afterwards, I either have a lot of energy and have a hard time sleeping, or they exhaust me. Good luck!

Kenu profile image
Kenu

I have had the 3-5 days of steroids and yes it did effect my taste buds 😕. I would eat before you go and also the candy’s for metal taste. It always wired me and afterwards for a few days I was pooped. Remember everyone is different, but it has helped me every time 👍😉 It’s an easy process so don’t worry 😉 Good luck. My prayers are with you 🙏🐾Ken

Wizardsmom profile image
Wizardsmom

I have had IV steroids multiple times and would recommend that you eat before. Drinking is fine before, during, and after but water will definitely taste weird so I would stick to something with flavor. I have never felt much different after receiving steroids.

ssdw1958 profile image
ssdw1958

You can eat normal, take your medicine at the regular time, relax and more important than anything buy three good kind of chocolate candy 🍫 bars, you are having three days of infusions so one candy bar for each day. The reason being you are going to have a metal taste in your mouth. You say what but you will know what I am talking about after your infusion.

Good luck just relax !

Doubled51 profile image
Doubled51

I just did a 3 day home infusion. Nothing to it but everybody’s right about that nasty metallic taste. Some good hard candy helps because it last longer. I was rather disappointed in my results but everybody’s different.

Donnie

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Doubled51

Way to go positivity! 😂🤣

Doubled51 profile image
Doubled51 in reply to Jesmcd2

Thank you. Thank you very much.😂🤣😜🤪

Donnie

MaryMargaret1966 profile image
MaryMargaret1966 in reply to Doubled51

Lol

bxrmom profile image
bxrmom

Hard candy for the metallic taste of the steroid. I always took a can of pop with me or the nurse would bring it to me. But nowadays I don't drink pop so water it is. Something to keep you busy during the infusion, reading materials, phone/tablet to play on, etc. I had like 2 or 3 different infusions in the beginning when I was first diagnosed and each time it was different as far as energy afterward. Sometimes I had a lot of energy and other times I was wiped out. Not sure why there was a difference.

Good luck!

Jessie

Jeremyhess1980 profile image
Jeremyhess1980

First infusion went well the metallic taste was the worst part. Actually feel pretty good but not completely normal which I know I may never feel again but it’s a step in the right direction I suppose. Second one tomorrow so we’ll see anywAy bedtime.

Just a side thought feeling quite pissed- I guess - about all this just that my life has been turned inside out, yes I have people who care and are there for me but i have always been independent and I hate that I have to start over— rant over

Night 😥

Doubled51 profile image
Doubled51 in reply to Jeremyhess1980

Rant on Jeremy. It’s been a year this weekend for me since my dx and I still get pissed and overwhelmed occasionally.

Donnie

TwoFacesofMS profile image
TwoFacesofMS

I’ve eaten gummy bears during infusions to keep the metallic taste as bay, but steroids raise your blood sugar. So if you have any issues with that to start, tell your doctor. Also, I have to take an anti anxiety for several weeks after because it makes me super jittery and something to sleep at night.

Jeremyhess1980 profile image
Jeremyhess1980 in reply to TwoFacesofMS

I have been on Ativan for years for anxiety. Have felt pretty good all day came home and did a bunch of stuff around the house kept my self busy for sure even had a bonfire 🔥 which was awesome, now it’s time for bed but can’t sleep for many reasons while the steroids are playing into that also. I don’t like not having “control” over my life that also is keeping me awake, all the what-ifs. I had cheesits and ginger ale at my infusion today they definitely make the bitter taste worse 🙀 my Hershey bar and root beer 🍺 made it better once I got home 😋

TwoFacesofMS profile image
TwoFacesofMS in reply to Jeremyhess1980

Ativan is meant for two weeks max, not years given it’s a benzo and highly addictive. I would absolutely discuss this with your neuro. Everyone is different, but I definitely can’t sleep after steroids without med.

MaryMargaret1966 profile image
MaryMargaret1966

Glad to hear your infusion went well. I find after getting them that my mind starts thinking about "everything " & it will wake me up. Somehow you need to calm your brain down, settle it. Try not to worry about the "what if's". With MS, everyday is going to be different. When tour used to being dependant, the hardest thing to get used to is asking for help. Except the help. Don't struggle. It just makes you feel more aggregated with whatever your trying to do & that's when your anxiety increases. It's ok to receive help. Worrying about the what if's isn't going to change anything. Let it go. Hang in there the infusion made you feel a little better. Embrace it.

MaryMargaret1966 profile image
MaryMargaret1966

Used to being independent. I mentioned to say..

kerry0915 profile image
kerry0915

I found that chocolate milk well a chocolate milkshake takes away the metallic taste Good luck I just had a 3 day round 2 wks ago and that is what I did

GoodLuck

Jeremyhess1980 profile image
Jeremyhess1980 in reply to kerry0915

I tried white milk last night cause it mellows my heart burn it was nasty 🤢

Fancy1959 profile image
Fancy1959

Jeremyhess1980, it's Fancy1959. Try not to stress about the infusion. Relax and understand they do this dozens of times a week. Make sure you drink lots of water the day before and morning of. This will make your veins easier to stick. And speaking of putting the IV in your arm, that is the worst problem you will have during the infusion. So if you're okay with putting needles in your vein you have nothing to worry about. Take Along some kind of hard candy with flavors to suck on afterwards and during the infusion because the steroids will leave a unique taste in your mouth that isn't always Pleasant. Be prepared for the infusion to take about an hour because they slow drip it directly in your vein they don't want to overwhelm your system. If you need to afterwards just sit for a bit and get your bearings. If you feel okay and drove yourself or if someone dropped you off it is always a good idea for me to pull into a close fast food restaurant and get some food along with another big drink. That really allows your body to settle down and your psyche settle down most of all! I know this procedure, even after physical therapy also, has helped me tremendously. Give it a try it might help you to.

Babslover profile image
Babslover

Hi Jeremyhess hopefully the steroid infusion helped you. I had to do have this two different times with a super outcome.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Jeremyhess1980

Jesmcd2 profile image
Jesmcd2CommunityAmbassador in reply to Jesmcd2

Lemon drops, and fruit.

And keep an eye out for 'roid'rage. As it can come right out of the blue. So if you are aware of it, you can stop it! ☺😉

Steroids can take time to work, so don't expect results right away, as I'm sure your Dr told you?☺

Keep us updated!

J🌠

mrsmike9 profile image
mrsmike9

With my late reply, I'm sure you're going fine with the infusions. For me, the worst part was the taste. I carried around peppermints in my bag for weeks afterwards. For me it probably took at least a full month for that taste to go away. Yuck!

It really helped get me back on track but not sure I would do it again just because of that horrible taste!!!

You may also like...

Infusion

having my Ocrevus my first full dose the only thing is I keep on falling to sleep. I know this is...

1st time Ocrevus infusion

Ocrevus infusion next Thursday. Anyone out there that is willing to tell me line by line what to...

Steroids

Thinking of asking for iv steroids when I talk to ms Dr tomorrow about DMDs.

First Ocrevus Infusion Today

the first 1/2 of the first Ocrevus Infusion today! I'll post later how it went. I'm nervous about...

Update on my infusion fiasco

for my July infusion but I called the infusion center and spoke directly with the infusion person...