Ocrevus

[Sunshine]

Saw the neuro today about wheelchair. He must have been struck by my decline and mentioned Ocrevus and Rituxan as alternatives to IVIG. It’s tempting, but the IVIG has done wonders for the CVID, I would hate to lose that benefit,


How is everyone here doing on Ocrevus lately?

[Lazarus]

Saw the neuro today about wheelchair. He must have been struck by my decline and mentioned Ocrevus and Rituxan as alternatives to IVIG. It’s tempting, but the IVIG has done wonders for the CVID, I would hate to lose that benefit,


How is everyone here doing on Ocrevus lately?

Yes, I understand. The 8 years I did IVIg. Were great. But, so are these last years on rituxan. And...this is a big and so pay attention!, there is serious data showing improvement with Ocrevus and rituxan.

After two years on rituxan I kept saying some things seemed better. I could stand longer and stay awake many more hours of each day. I had some setbacks that were huge but those were years of constant and intense stress when John was facing imminent death so it is hard to judge. When John was at least stable I started getting better and the rituxan improvements were again obvious.

Each month now I am living better. My neuro wants me to consider Ocrevus if/when the rituxan seems to be slipping. He says the Ocrevus shows slight improvement in stopping inflammation.

Nothing else has been approved for PPMS or SPMS. This is real hope for some improvement....

Your doc is good. My neurologist mailed me a JAMA article with info on Ocrevus. I read it yesterday during my rituxan infusion. I would strongly consider Ocrevus/rituxan.

That's my 2 cents.

[Sunshine]

The IV I G has gotten rid of my MS fatigue, it has also greatly reduced inflammation in my lungs so that I am not coughing constantly due to the CV ID disease. And, I have found some modest benefit with spasticity.

Ordinarily, I would probably jump at the chance to try Rituxan . However, I am certain that without the I VIG my lung problems with return. Also, one reason people with CV ID use the I VIG therapy, is to prevent a certain type of cancer that streaks people who have CV ID.

This is quite a decision to make. I have a regularly scheduled meeting with the neurologist in February. I asked him if we could further discuss it then I also have a meeting with my immunologist in a couple of weeks, who manages the CV ID. I will talk to him about whether he knows if right Texan could benefit it as well as I VIG.

Thank you both for taking so much time to post about this.

[stillstANNding]

"Right Texan" made my day. Thank you auto-correct.
ANN

[agate]

Spell-check often has me doubled over with laughter with some of the possibilities it would like to use.

[Sunshine]

That’s pretty funny! I missed it on proofreading. At least it didn’t say right Tuxedo.