Ocrevus without steroids

[hairbrain4]

I had my Ocrevus infusion on Friday without the steroids. I had to take the Benadryl though. I haven't had any reactions and I got to sleep that night. The steroids always kept me awake for at least 24 hours. I did have two episodes of A-fib along with high blood pressure readings & shortness of breath. Don't know if it's Ocrevus related or not. I see my cardiologist next week & maybe he will have some answers. I met 2 other people at the infusion center with MS getting infusions. One was getting his first Ocrevus infusion and the other was getting her Tysabri infusion. I was jealous cuz she came in after me and go to leave before me! At least the center has nice new comfy chairs.

I saw my neuro today & she was pleased that I didn't have any reactions. She wasn't sure about what might have brought on the high blood pressure events I had this week since there were no steroids. She did give me a memory test because my memory is rapidly failing. She thinks my memory problems are from lack of sleep as I am only getting an average of five hours a night, according to my Fitbit. She did send in a prescription for Trazadone to help me sleep. I also have a C-PAP that wakes me up after about 3 hrs choking cuz my throat is dry. I do use a spray called Biotine before going to sleep which helps some. Eventually, I will get back to my "normal" as my thyroid is coming back up & I've had a good dose of Ocrevus!

[mm1527mm]

Steroids keep me up all night also. Glad you completed your ocrevus infusion ok minus the blood pressure issue. Hope all goes well with cardiologist.

[palomino27]

Trazadone was horrible for me. Not only did it make me feel like a zombie but emotionally not present as it's an older anti-depressant.Just wanted to say be careful with it....

[TonyiaR7 in reply to palomino27]

But it works. Lowest dose possible. You can also get odd dreams if dose is too high. Benadryl is an option.

[hairbrain4 in reply to TonyiaR7]

Benadryl dries my throat too much.

[TonyiaR7 in reply to hairbrain4]

I get the same reaction from Benadryl. I suffer from dry mouth, and for some reason I get a dryer mouth and throat. I don’t use a prescription of Benadryl, but the OTC version with no alcohol. But Benadryl puts me to sleep faster than trazodone. But give trazodone. a chance but take with food.

[hairbrain4 in reply to TonyiaR7]

I use the Walmart brand "Sleep Aid" it has 25mg of benadryl. Works great except I wake up choking.

[TonyiaR7 in reply to hairbrain4]

Be careful. Strange reaction to sleep aid, waking up choking. Be careful.

[hairbrain4 in reply to TonyiaR7]

Sleep Aid is just a generic Benadryl & I don't have any problems with Benadryl other than it drys me up too much at night.

[starlight5]

Glad your infusion went well. I asked the infusion center and they said they have never given ocrevus without the premed steroids.

[hairbrain4 in reply to starlight5]

I had to have my neuro order it that way.

[JTZES]

I got my Ocrevus yesterday as well. I have been mild heart attacks over the past month and my first Cardiology appointment isn't until next Friday so she decided to not give me the steroid as well. It wasn't an Ocrevus issue but a cardiac issue. She did not want to give anything that would affect my heart rate. So steroids are not good with heart issues.

[hairbrain4 in reply to JTZES]

Yeah I have A-fib & the steroids were setting it off.

[TonyiaR7 in reply to hairbrain4]

And it sounds like some anxiety. Steroids make me anxious and gives me sleep problems. But I wouldn’t want a reaction to the infusion.

[hairbrain4 in reply to TonyiaR7]

It was either get the infusion without the steroids or stop Ocrevus. I never even had an infusion site reaction to it. This time without the steroids I still didn't have any reactions, not even at the infusion site. I had more of a reaction to the blood draw Tuesday than I did Ocrevus. So I am glad it's going to work without steroids. Ocrevus has worked so well for me as I have 5 months with no MS symptoms. Month 6 they start coming back.

[bpriddle]

I have been on Tysabri for 3 years and have had no issues. No new lesions

[hairbrain4 in reply to bpriddle]

I have a friend on Tysabri too but I didnt want to get an infusion every month since its a 2 hr drive to the infusiin center.

[bpriddle in reply to hairbrain4]

In your case I would go with the Ocrevus it works well as well

[hairbrain4 in reply to bpriddle]

Yes it does as it takes away all my symptoms for 5 months. The last month I seem to get that "crap gap".

[bpriddle]

I have used Tysabri fo 3 years. No issues and no new lesions

[TonyiaR7]

Don’t be so jealous about Tysabri. All these medications (especially the more newer DMT), have some side effects. Some people are blessed with no symptoms. I had to stop using Tysabri due to extreme low pressure. My BP went down to 60/40 during the trial. I tried it again being watched carefully, I still was running a low blood pressure 80/60. I stayed on it for a week and ended up with low

But I didn’t try Ocrevus. I am still taking Copaxone. My neurologist wants going to start me on a DMT during Covid pandemic. My white blood count tends to lower on several of these DMTS(s). I hope that one of them work for you. Everyone’s body is different. Give it a chance. But you know your own body the best.

[hairbrain4 in reply to TonyiaR7]

I did copaxone for ten years. It worked pretty good for me but I started getting lumps on my hips & indentations on my arms & they were getting real painful. Thats why i changed to Ocrevus. I love the O because it takes away all my symptoms for 5 months. But the last month I get that "crap gap".

[JTZES]

It sucks having one major problem with another on top of it. I couldn't do a lot of things and now have too limit even more. It just blows

[hairbrain4 in reply to JTZES]

Yep! 😜