It just occured to me that I have an infusion set up for july 16,has anyone done this during the pandemic and did they give you any special aftercare instructions since this kills some immune cells?good news hubby can go with me for treatment ,at 1st it was drop off and pick up
ocrevus: It just occured to me that I have... - My MSAA Community
My next ocrevus treatment is the 16th also. I’m a little nervous. I think we’re going to have to be very careful afterwards!
Do you feel like the meds are pretty much gone now? I’m having a lot of symptoms now and am needing a lot of meds to manage my MS symptoms right now. I had a nasty relapse in January waiting for the meds.
I had mine last month pamgarner and the only special instructions so speak was to wash hands, wear mask, and stay away from sick ppl. Besides the mask, no difference.
But, that's My Dr. 🤗💕🌠
I am discussing via virtual appointment with my neurologist this week. My next infusion is scheduled for 30 July.
There are a number of things that I am concerned about to include the moderate risk associated with B cell depletion but also the effectiveness of upcoming vaccines to include for regular flu and potentially for Covid in the near future.
Also I am secondary progressive MS and have recently had some progression and I’m wondering how effective Ocrevus still is for me. I guess you only know when you stop it.
Also the infusion of the steroids with the Ocrevus is additional risk because of lowered immune system.
Must weigh pros/cons for yourself.
I always go to an infusion center and I’m sure that they’re abiding by pandemic precautions. I wonder is it safe for or less safe having a home health nurse come to your home?
No easy answers 🤷♀️🤷♀️🤷♀️
I am talking on the phone with my neuro tomorrow. I used to be on the same Ocrevus schedule as you. I have cancelled all of my appointments this year.
I was surprised at my last appointment on January 30 that the usually packed infusion room was completely empty. Now I know why.
I also believe that these doctors who say Ocrevus does not present a problem during the pandemic are irresponsible and have their own agenda.
Just had my infusion.
Nurse practitioner wore mask, as did I, and more hand sanitizing than normal. Other than that not much difference from previous infusions.
I didn’t take the steroid infusion with Ocrevus this time and no additional side effects. I decided no steroids to try to prevent/reduce gain associated weight previous infusions. It’s been 48 hours since infusion and so far so good!
It was not a welcomed request since the Ocrevus drug manufacturer has established protocols to administer steroids with the infusion but my neuro is amazing and accepted my wishes. He told the infusion center no Steroids and they followed his orders. The infusion center told /warned me that if I show any signs of reaction they will immediately and without hesitation, admInister the steroids. I was good with that compromise. It’s been a week since infusion and with the exception of a slightly scratchy throat and some annoying itching, I do not have any serious side effects. Also, no weight gain. Trust me when I say the weight gain is not about being vain. An extra 10-20 lbs greatly reduces my ability to walk and excerise and I feel so lethargic, that is the only reason weigh management is critical to how I live with MS.
I had my last infusion at the end of February. I have been okay, and my next infusion is scheduled for the end of August. I have my concerns, pamgarner but I will always differ to my neuro because they know best, correct? Keep Smiling
Hi, pamgarner . I was dx'ed with SPMS in April but my neuro didn't want to start Ocrevs during the pandemic. In conjunction with my researching both the efficacy and safety of Ocrevus, among other meds for SPMS, I spoke to the neurologist who dx'ed my RRMS nearly 10 years ago and treated me until we relocated. He said that the data so far do not indicate a greater risk for COVID-19 for Ocrevus patients than the slightly greater risk that MS patients have in general. He said to practice the currently advisable precautions (masks, social distancing--there is controversy about gloves) and it should be okay. Good luck!
I just had my 4th round on 6/16; not that many patients this time. Afterwards I battled with the inability to sleep for a day, then I was just exhausted for 4 days and immediately next came the Flu..
Today I feel well but my sleep rythm is still off. Between M.S./Corona or Menopause, I'm not sure which is the culprit
But, I survived and I have faith in the rest you!