Steroids gah!

[rlh1974]

So As some of you know. My ocrevus was Monday. Well the steroid high has worn off. I woke up this morning feeling like I went 10 rounds with mike Tyson. I truly truly hate steroids!

[Doubled51]

Sorry the steroids affect you so badly.

I just had a 3 day round about a month ago. Seemed like they were helping the first week. But been downhill since then. That was my 3rd round this year. It took 2 rounds in the spring to get me feeling better.

Feel better soon and good luck with the Ocrevus.

Donnie

[Jesmcd2 CommunityAmbassador]

Get some rest rlh1974 I don't do well on the steroids either Rob. They just mess me up. But I don't think they have ever bitten my ear off.🤔😞😂 Feel better soon!🤗💕

J🌠🦃

[carolek572 CommunityAmbassador]

rlh1974

Steroids never really have a terrible effect on me. Early in my diagnosis, I was given monthly injections of methylprednisolone for about 18 months. They made me feel great, but everyone has different experiences.

Hope that you feel better soon, and next time, don't let Mike ruin your fight!

Carole

[rlh1974 in reply to carolek572]

Carole, I have managed to keep. Him from biting. My ear off like Jess had mentioned! LOL!

[carolek572 CommunityAmbassador in reply to rlh1974]

rlh1974

Keep up the good fight next time!

Stay Strong,

Carole

[rlh1974 in reply to carolek572]

carolek572 I have been given steroids about a dozen times. They NEVER EVER work. So they stopped trying. I had them this time because my Neuro adds Benadryl and steroids before the Ocrevus. My infusion was Monday and the Benadryl still has me sleepy! LOL

Thanks for the support!

Rob

[CraigS]

I get the “stay up for three days” effect with the steroids. Then there comes the big crash and sleep for a whole day. I just make sure I have things to do when I’m up. Some fun, eh?

[carolek572 CommunityAmbassador in reply to CraigS]

Good attitude, CraigS

By the way, are you a Canadian, eh?

Keep Smiling,

Carole

[jimeka in reply to CraigS]

Update please on your next door neighbour and Elvis ? Hoping they are both doing well and how is the guitar teaching going ? Blessings Jimeka 🦋

[RoseySawyer]

I hope you feel better. 👀❤🌷

[erash]

Hang in there. The O not the steroids are the magic and hopefully that kicks in for u soon🌈

[kdali]

Sorry you’re feeling beat, I hope you rest and have a better day tomorrow!

[Grannykus]

Me too. I just went through a 3 day round of solumedrol infusion. Yuck!

[mrsmike9 in reply to Grannykus]

I've had solumedrol once for 5 days. The worst thing for me was the taste in my mouth! I kept peppermints in my purse and had one in my mouth almost constantly. It took forever for that nasty taste to leave. Hope I don't have to do that again!

[Yooper]

Praying Ocrevus works for you 🙏. Keep up the good fight.

[Ali_B62]

I hate steroids too, sometimes they have their uses though. Hope you are having a better time now.

[scooterjon58]

I know nothing about Ocrevus. I do know I took IV steroids six times in the 1990's and early 2000's to help with MS exacerbations. This past August 20th I had 26 teeth removed from my mouth! I blame that on the IV steroids. All my neurologists said taking IV steroids wasn't the best but none ever said anything that the steroids were hard on teeth. scooterjon58.com

[rlh1974 in reply to scooterjon58]

scooterjon58 Man, I am sorry to hear that. I don’t need any help with my teeth. My diabetes has resulted in a few having to be removed. I don’t need the steroids doing the same!!! Also, I priced out implants. OMG! 15g for them. I cant afford that on social security. I guess I should start playing the lottery! LOL!

Rob

[IFwczs]

Don't even put a quarter in me! I had my first two Ocrevus half doses in August. Of course, they were preceded by steroids and Benadryl. I fell both times exactly three days after the infusions, the last time ending up in the ER. I actually emailed my neuro yesterday and asked to reduce my steroid dose for my next infusion.

P.S. I think you and I are the same age.

[rlh1974 in reply to IFwczs]

IFwczs Funny you should mention you fell. I took a wicked diggah yesterday. (That is bostonite fora bad fall) You can take the boy out of Boston, but you can’t take the Boston out of the boy! Anyway, My whole right side is sore and bruised. May have cracked a rib. Nothing worth going to the ER over. Glad I am not the only one. I think I fell from a combo of the steroids and lately I have been really really shaky. I notice it when I am putting away the dishes and my hands and arms act like I am in a rush. But I am just trying not to drop anything.So it is the same while using my cane.

Thanks for sharing,

Rob

[IFwczs in reply to rlh1974]

Sorry about your fall. I didn't have a say in going to the ER - I fell at work and my head was bleeding, so the building sent me sort of against my will, I am sure for liability purposes. My neuro just responded to my email and agrees to reduce my next pre-Ocrevus steroid dose in February. We have to be extra careful after these infusions.

[IFwczs in reply to rlh1974]

Rob, how are you doing on Ocrevus? I am in the same boat in that I have had no new lesions but my disability is progressing. I just had the first full dose in February. My neuro in fact reduced my steroid dose last time, so I didn't fall after the infusion, like the first two times.

Irina

[rlh1974 in reply to IFwczs]

@IFwczs I so far am doing very well. I do not credit the Ovrevus though. I credit me getting off my pain meds! It has been 60 as of today!!!! I just realized that! So my pain still sucks and so does MS but my mental outlook has been great the last 45 days! My second dose is in May. That is if Medicare will cover it. Thank you for asking!

[IFwczs in reply to rlh1974]

rlh1974, from what I have learned here, Ocrevus only starts showing results after 3 doses. So we have to be patient.

[rlh1974 in reply to IFwczs]

That is what I hear. Like I said. I credit a clear mind!😂 As clear as a mind can be with MS.

[IFwczs in reply to rlh1974]

I think my fatigue is less since I've been on Ocrevus. My neuro thinks it's possibly due to Ampyra though. I am just glad there s something for progressive MS now.

[hairbrain4]

I'm sorry that you have trouble with the steroids. I wish they didn't have to use the steroids & Benedryl before the Ocrevus infusion. The steroids make my feet & legs swell so bad. A couple of years ago I had a 3-day infusion of Solumedral & I felt like a stay-puffed marshmallow! It took about 2 weeks to get all the swelling down. I had several 3-day infusions in the past & nothing like that had ever happened. Don't know what caused it either. But with my 2nd Ocrevus dose I had swelling again. My next dose is at the end of March so I will be talking to my neuro about reducing the steroids for that dose. That said the Ocrevus has done wonders for me. I have energy that I haven't seen in a long time! Most of my pain is gone & the fog in my head is gone. All that outweighs the steroid effects for me. I hope it does the same for you.

[lbenmaor]

I'm sorry it didn't go well with the steroids.

Leslie