Immune deficiency

[Linda3579]

I have been off of Ocrevus for a year now, but my immune system will not recover. I was previously on the infusions for 6 years. Has anyone else encountered this problem?

[kdali]

I believe there are a few posts here regarding B cell recovery times. If I remember correctly, some needed 2 years, and some are still waiting.

[Linda3579 in reply to kdali]

Thank you for your reply kdali. I haven’t been on this site very often as I have been sick a lot, and my son is fighting ALS. 🙏

[Haku949]

My son just started Ocrevus and so far we have not seeing these sort of issues. I wonder how others will reply!

[Linda3579 in reply to Haku949]

Wishing the best for your son. It’s so hard to watch your kids deal with illnesses. 🙏

[Elizt3]

my last infusion was February 2024. My lymphocyte count started to return in December but it’s still not within the normal range. My neurologist thinks in the next couple months it should be back to low normal.

[Linda3579 in reply to Elizt3]

Hi Elizt3, Thank you for your reply. It’s encouraging to know you are on your way back. Best wishes🙏

[erash]

I had the same problem and after almost 2 years I went up to the Mayo Clinic and saw an immunologist who said this is quite common with okra and some people never get back. She did some that my memory B cells were indeed intact still

[Linda3579 in reply to erash]

Thank you for your reply erash. My neurologist seemed surprised that I haven’t had any gains in my B cells after a year. It’s very interesting that the Mayo Clinic said it is quite common. My memory cells are definitely suffering. 😟. I did spend a week in the ICU with COVID. That’s when I quit Ocrevus. Stay well and mask up in crowds🙏

[erash in reply to Linda3579]

my neurologist said the same thing. And memory B cells are those that remember viruses and had before you started on

[Robsmom]

I was on for a little over 6 years and my last infusion was in July of 2023. This month when my PC did my labs , it was the first time everything was in the normal range. I have my MRI and annual Neuro visit Friday. Hopefully the labs will be good then too. I know they do different ones.🤞🏾

[Linda3579 in reply to Robsmom]

That’s very good news!! Thank you! 😀

[Linda3579 in reply to Robsmom]

🤞 Fingers crossed for a good report for you. 🙏

[ahrogers]

Are you going off of IgG level and bcells? Just curious what labs you are referring to. My neurologist doesn't check bcell count anymore, just IgG and regular blood counts

[Linda3579 in reply to ahrogers]

I was referring to the labs that measure my Immunoglobulin G (IgG) Levels. I should have been more clear about that. My neurologist does not check B cell count either.

[ahrogers in reply to Linda3579]

Thanks, I was wondering if I should be having additional tests

[Sylyons]

I'm not sure. I've been off of Ocrevus for about 2 years and was on it for about 6 years. Since being off of it, I caught a virus from my 1-year-old grandson. And the whole house got it as well. I had two bouts of bronchitis with steroids. I had a history of bronchitis before Ocrevus; however, while on it, I had many more. Also, each time I had an infusion, I required more and more Benadryl and was there all day because of the reactions I was having.

[Linda3579 in reply to Sylyons]

It sounds like a good thing that you are off of it. I hope your immunity is rebounding. I know from experience that those little grandchildren have potent germs. Thank you for your reply.

[carolek572 CommunityAmbassador]

I am planning on getting off of Ocrevus,  Linda3579 . I have been on it since January, 2018, and my next infusion is scheduled for beginning of May. I plan to have a blood test called Octave that will measure ‘ms’ disease activity and progression. If the levels are low, my infusion will be delayed. The plan is to have this test every six months to monitor disease activity. My hope is that I need not have Ocrevus any longer. 🙏 I worry about my immune system as well, but my levels have been enough to keep me healthy, so far. Keep Smiling

[Linda3579 in reply to carolek572]

That’s interesting information carolek572. I have never heard of an Octave blood test. I’ll check on that. I thought I would need another MRI to check on disease progression. It sounds like you have a good plan. It’s so hard to make these big decisions about DMTs. Wishing you the best. Thank you for your reply. 😁🙏

[carolek572 CommunityAmbassador in reply to Linda3579]

You’re welcome, Linda3579 . My neurologist is keeping a close eye on all this. She agrees that Ocrevus is a powerful DMT, but she is unsure on how long anyone can be one it and still have a good immune system. I wish you the best as well! 🙏

[Raingrrl]

Hi…I’ve posted my story here multiple times but basically Ocrevus kept my MS stable but took a toll on my immune system. I was on it for 5 years with ever decreasing IgG measures. It ultimately set the stage for me to become very ill from rare infections requiring life-saving surgery.

I’ve been off of it for 3 years and my IgG level are still low though my B cells are within the normal range. I help day care my grand-niece and get sick everytime she does. It’s annoying. My IgG levels were last checked in October. I’m going to ask for a recheck in April.

[Linda3579 in reply to Raingrrl]

Thank you Raingrrl for reposting. Someone mentioned there had been a post about Ocrevus and the immune system, but I couldn’t find it. I’m sorry you went through so much. I almost lost my life to COVID. I spent a week in the ICU. I was very lucky to get well as I had pneumonia too. Ocrevus kept me stable too, for a long time. After covid I went off of O. It has been a year but my IgG levels remain very low. I’m always nervous around people and especially my grandchildren. I hope your recheck in April shows an improvement. I know there is a lot of anxiety when your IgG levels are so low. Wishing you the best. Linda🙏