I saw my Neuro

[kycmary]

Well not as bad as I thought it would be. I have to get blood work before my next infusion to see what my B cell count is, if it is too low I have to wait a while before I get an infusion.

Because I had pneumonia then I got an infection on the back of my head. All that since March 28 th. I promised to be more vigilant about things as the infection was my fault. I got a rash on the back of my head & when it itched I scratched. I am back to watching everything I do just like when Covid hit! I do understand about the B cells fighting infections.

[Xvettech]

I am happy to read it wasn’t as bad as you thought. If you have to wait, how do you deal with it? I am on kesimpta. I have to take every month. By the 3rd week I am doing horrible. I know the meaning of the silly phrase “crap gap”

[lbenmaor]

I'm glad it was not as bad as you thought it would be.

Leslie

[CatsandCars]

I'm glad you're happy, but I don't like that you're thinking the infection on your head was your fault. It's human nature to scratch when you itch!

Mary, I know you like Ocrevus, and it's certainly not my place to second guess your doctor or your wishes. But sometimes when people are on Ocrevus and their immunoglobulins get low, and they start having more infections, they are at risk for infections that are more serious. Some people are okay with this because MS is such a serious disease. But I know that Raingrrl had a life-threatening intestinal infection, and afterwards she said that she wished she had insisted on being taken off of Ocrevus when her immunoglobulins dropped.

I don't know how active your MS is, and we all have to weigh the risks for ourselves. But as we age, our immune system tends not to work as well, and if we're doing well over time, we may want to consider taking a medication that's not as potent because of the risk of serious infection. I've heard YouTube's Aaron Boster and the British neurologist Gavin Giovannoni refer to this as "derisking" or "deescalating" your treatment. Maybe your doctor already talked to you about this? I just thought I would mention it in case you hadn't. In any case, it's good that he's following your B cell counts and is going to temporarily withhold your next infusion if they're low.

I hope everything works out for you! ❤️

[Cwright170994]

I had a bit of the same situation when I first started. I was in hospital for 27 days, hooked up to IV prednisolone, and I got a call from my MS nurse telling me I'm going on ocrevus. When I was able to be discharged, I had to titrate off prednisolone. I had bloods done at the first time they asked, before they'd let me attend the infusion clinic. I then got a call from my MS nurse, explaining why I couldn't go in yet. My B cells were too low to safely administer ocrevus, so I had to wait a few weeks before I could start.

It's a shame that antibiotics/illnesses can affect you so much! I've never heard of that experience before you mentioned.

[CatsandCars in reply to Cwright170994]

I guess it depends a lot on whether your immunoglobulin G gets to be below normal, and even then doctors tend to ignore it unless you start getting a lot of infections. MS is a horrible disease, so it's worth taking some risks, it just needs to be an informed risk.

[Mollyabigail]

Please let us know about your B cells, Mary. Blessings to you.