Rituximab experience
 

Hi everyone.
Been advised to take Rituximab and hoping someone can answer my questions from experience:
a) How long before it kicks in, i.e. weeks or months?
b) As I am unable to take steroids or steroid sparing drugs, how do I get stable before hand, as IVIG is being refused on cost/supply grounds (UK)?
c) How great is risk of infection and for how long?

Many thanks.
Magister

Hello Magister, :) I'm sorry that you haven't had any feedback, as yet. In the medical world, this is relatively new to MG. In Canada, I believe it is generally, still considered "off label" in most Provinces for Myasthenia. There was some testing going on in eastern Canada. It "appears" to have been a positive experience. There was one report, I believe American, that it wasn't long lasting, approximately 6-months. The problem is this is subjective, meaning, that 's what the patient reported. It is difficult for patients to receive this treatment here for other conditions because some provinces won't cover it--it is incredibly
expensive.

Health Canada has a number of warnings, albeit, relatively rare occurrences, in the use for other conditions. I hope you'll hear from someone. :)

I am good friends with a gal who was in the clinical trial for Rituxan here in the US. I will list the things I know about her experience.

1. They will pre-medicate with IV steroids. If this is going to be a problem, you will need to address it beforehand.

2. It is chemo, so you can expect some chemo side effects--nausea, aches, feeling generally "yucky."

3. The risk of infection remains until your white blood counts normalize. I don't think my friend's ever were affected as the dose for MG is much less than what they use for lymphoma, so that risk is less.

4. There is a risk of PML. You should strongly consider being tested for antibodies to the JC virus before proceeding. This is a serious thing, as PML can be crippling or most usually fatal. If you test positive, you will have to decide if it's worth the risk.

5. Sadly, my friend had no positive effects from the Rituxan. She is positive for ACHR antibodies and later studies found that it works best on those who are MuSK positive or serognegative. Food for thought.

Finally--I have had high dose chemo (Cytoxan) for an immune system reboot, so I know a little about chemo side effects. I strongly urge you not to attempt to eat your favorite foods in the day or two surrounding the treatment. If you get sick/vomit them, you will likely never want them again. Eat things you don't particularly love! I am now the vegetarian who cannot STAND the thought of eating vegetable soup! How crazy is that?!

If you have any other questions, please ask. I will find answers for you.

Good luck.

Thanks
 

many thanks everyone.
I have had conflicting medical advice about jc virus screening as well.
I will follow up all issues.
Magister

Yes, the JC virus screening is new, and not perfect. Sigh.