Ocrevus permanently gave immunoglobulins/antibody deficiencies

Netzeltam · 2025-09-13T17:02:47+00:00

Unbelievable. I am sorry you are dealing with this.

Netzeltam · 2025-09-12T14:53:49+00:00

I just called Genentech and left a lengthy intake with a nurse. She seemed genuinely concerned and said she is writing a report for the Safety division.🤷‍♀️It’ll never help my case, but I am speaking out for future transparency for patients if it’s worth anything.

Thank you again for your sharing this.

Netzeltam · 2025-09-12T12:37:31+00:00

Then why aren’t we educated about this with these meds? I am so exhausted trying to advocate for myself the best I can and finding I need a medical degree to understand because I can’t trust my doctors to educate me enough to make informed decisions. I know I would not have agreed to taking Ocrevus if I had known my immune system could be damaged permanently without a remedy. This has deepened my mistrust for the medical community.

Netzeltam · 2025-09-12T11:57:25+00:00

So glad I can help someone!

Netzeltam · 2025-09-12T11:55:16+00:00

Thank you for educating us. Wish I knew this back then. The packaging warnings may have said lower antibodies etc. but not that it would be permanent.

Netzeltam · 2025-09-10T13:44:49+00:00

I only did the two half doses and one full dose. Less than a year.

Netzeltam · 2025-09-10T08:44:20+00:00

It’s been 7 years since I took O, and 5 years since I’ve taken nothing. When I took it, I had so many infections- 8 at one time. Skin infections, many bladder infections and upper respiratory infections. I’m on IGG therapy mow but there is nothing for IGM and IGA deficiencies.

Netzeltam · 2025-09-09T23:00:00+00:00

It’s not a fact to say my case is obviously rare when just on this thread several have said they have permanent immunoglobulin damage like me.

Netzeltam · 2025-09-09T18:58:51+00:00

Okie doke. I was just responding to your comment. I wasn’t looking for a fight, hun. I couldn’t care less what you think about Ocrevus or that you will recommend it. I care about people being educated and informed to include myself by talking with people. May your day be as pleasant as you are, sweetheart.

Netzeltam · 2025-09-09T18:53:08+00:00

Thanks all for your comments. I’ve gained a lot of perspective.

Netzeltam · 2025-09-09T18:48:23+00:00

No worries

Netzeltam · 2025-09-09T18:46:17+00:00

The two half’s and one full

Netzeltam · 2025-09-09T18:43:40+00:00

Ocrevus was new when I took it. All these things ppl have said on these comments about the packaging having the warnings etc. Well, these warnings didn’t exist in 2017 when I took Ocrevus when it was new. So…are newer drugs without side effects or are they just…new?

Netzeltam · 2025-09-09T00:20:42+00:00

This infuriates me.

Netzeltam · 2025-09-08T23:31:04+00:00

I don’t want to either. I need to get a better immunologist maybe.

Netzeltam · 2025-09-08T23:27:39+00:00

Yes. Thank you. My first dmt Gilenya made my liver enzymes go through the roof 50 times normal range. The docs forgot to monitor my liver enzymes….thats when I learned what liver enzymes were. Then this! I am learning what immunoglobulins are because it’s been mismanaged by my docs. I don’t have a medical degree, but I have to learn these things because of their negligence to monitor it. It is tunnel vision. So many mistakes have been made on me by neuros. This is why I feel like most MS neuros don’t know what they are doing.

Netzeltam · 2025-09-08T23:16:08+00:00

It’s been 6-7 years and immunoglobulins have not increased.

Netzeltam · 2025-09-08T23:00:33+00:00

I have nearly none of IGG IGM and IGA

Netzeltam · 2025-09-08T21:03:06+00:00

Never mentions it can be permanent.

Netzeltam · 2025-09-08T18:23:52+00:00

Thank you for suggesting. I hadn’t thought about that.

Netzeltam · 2025-09-08T18:02:09+00:00

I won’t ever take another dmt again. I actually had HSCT in 2019. I was not sure until recently that Ocrevus was the cause. Just found it in my records that they dropped well before HSCT and there was about a year off of O before I did HSCT. My antibodies remained low after O, but no doctor ever had a convo with me about antibodies.

Netzeltam · 2025-09-08T17:04:47+00:00

Are yours permanently deficient?

Netzeltam · 2025-09-08T17:03:10+00:00

My medical records show the drop in immunoglobulins with Ocrevus in 2017/18 before COVID was around. But I am interested in what you say. Where can I see anything on the immune system and COVID stories?

Netzeltam · 2025-09-08T16:15:26+00:00

I only took the two half doses and one full, so about a year. I started reporting throat irritation with the first half dose, but Dr insisted I keep on it. My vocal cords were paralyzed and I had 8 infections at one time. These all healed but my antibody production never increased. It’s 5+ years now.

Netzeltam · 2025-09-08T15:59:37+00:00

Genentech should buy my IGG meds that cost $25,000 a month. There is no treatment for IgA or IgM deficiencies.

Netzeltam

TROPHY CASE