Steroids and symptoms

[JennyO1015]

Hello. Thank you everyone for writing in. It helps to know you’re not alone!! I finished my steroid taper this past Saturday as my doc had shortened a bit because I was suffering so terribly. So my negative symptoms seem to still be there even after stopping. Is this normal?

[Jesmcd2 CommunityAmbassador]

Hi JennyO1015 nice to meet you!🌞 I'm not a Dr. But I'm sure it will take a couple of days to get out of your system. Just take it easy on yourself. They have a way of messing you up! And your body needs time to get back to normal. 🤗💕 Hang in there!

J🌌

[JennyO1015 in reply to Jesmcd2]

Thanks a bunch!! Trying to stay positive!!

[Allen5280]

Hello JennyO1015 , I have to have a dose of cortical steroids before each infusion of Ovrevus and the side effects stay with me almost until my next infusion of months. I get skin problems and then it gets infected due to the Ocrevus and I fight it all the time. My last big dose of them was during a bout of optic neuritis in the fall of 2016 and had 5 days of them until my vision was returning and I dealt with the symptoms of that for a few weeks to a month maybe? It was quite long ago and I dont remember all specifics but I was so thrilled for my returning vision I really disnt pat it much mind, for when it starts going dark it gets a bit scary. I know each of us are different. I hope your negative side effects subside quickly. Might check in with your neuro to be sure it isn't something else?

[JennyO1015 in reply to Allen5280]

Thank you. Yes actually I ended up calling and speaking to a nurse at the ms center. She said she tackled my doc. Lol he ended up shortening my oral taper. (As it was making my symptoms worse and intolerable) And he said sometimes that will happen. I actually ended up calling 3 times and they reassured me it is the prednisone. So I’m staying hopeful. Oh I also had optic neuritis in my left eye about 20 years ago. It is scary the solumedrol brought my vision back but not completely. My doc back then said 5% of people dont fully recover. I guess I was in the 5%. But I eventually got used to it so my right eye took over. Thanks again for your help.

[Allen5280 in reply to JennyO1015]

I also didnt completly recover fully from my case either. It's ok most of the time but I was left with a condition (I can not recall the medical term) whereas my pupil does not dialate correctly. On a positive side. I have better vision in the dark. Negative side, there are huge halos around lights at night making driving after dark very difficult depending in the severity. It varies from day to day. I suppose the same as other pseudo exasperations. Mine vary widely depending on the day, stress, sleep, depression, anxiety, temperature, barometric pressure, moon phases... etc. All factor into what kind of day it's going to shape up to be for me. Ocrevus does not seem to help my case much with these. However, my neuro/specialist tells me no new developments on MRI so I suppose it's doing its job. It's my fourth DMT for I was unable to tolerate side effects of the first 3. I'm am know as hypersensitive to medications. It's not am I going to get side effects, its which ones and to what severity. It's made treatments difficult to say the least but I'm hanging in there. I apologize for the time it takes me to answer at times.

[JennyO1015 in reply to Allen5280]

Oh also can I ask how long you’ve been on Ocrevus and your opinion on the med and how it’s working for you. I believe that is the DMT my doc is suggesting for me. We’re supposed to discuss it at my next visit. Thanks.

[Allen5280 in reply to JennyO1015]

I've been on Ocrevus beginning of May 2017 so I'm approaching my 2 year mark. Due to infusion reaction issues following my infusion schedules have been slowly moved back. Adjusted to not fall just prior to holidays. This is so I can spend time with family and such. My first year I missed them all due to flu like fatigue. Theres so much to write about... I've tried to post accounts up until recently so if you would like, you can click on my profile. Then proceed to posts if you would like more accounts of my ocrevus journey. I seem to not always explain things well so of you have questions please feel free to ask. As for the fatigue my doctor added modafinil to my medications to help with it and it does to an extent. My recent downtime is due pusodoexperations due life stress and depression all picked up on me and hopefully soon I will be a little more active

[Jesmcd2 CommunityAmbassador]

Feeling any better today JennyO1015 ? 🌞 I hope so! If you're having this much trouble with the "roids" you might want to talk to your neuro about Acthar Gel instead. I don't know anything about except what is written here.

mymsaa.org/ms-information/t...

Check it out, and see if it's an option!🤗💕

J🌌

[JennyO1015]

Hello. actually I’m not wonderful. I feel like the tight feeling is there a lot today. Ever since I took the steroids it has been worse but then I’ll have moments when it’s better. My docs nurse said I really need to give it at least two weeks so I’m hoping to slowly feel better. My spasticity is better. So I’m trying to stay patient. Thanks for the info!!