My mom is having her first Rituximab infusion next Wednesday for her severe rheumatoid arthritis. She also suffers from Scleroderma which has made the RA much worse. With this new treatment, she too will have the risk of PML.

Has anyone heard about or known anyone on this treatment? I worry for her because she is getting really frail. I hope more than anything that this treatment will improve her QOL, because it is getting worse by the day....

Hi Amy, I was at a RMmsC seminar Sat. I read that Retuximab (used for ms tho, not FDA approved) was a bit better than Tysabri (highest efficacy of ms meds) was lower in risk (much, as I read the stats) than Ty. Hope your mom responds well

Hi Lyn, yes I stayed on Ty when I rec'd the report that I was jcv+ 2010. I found out yesterday that was a false + because I have now had 2 blood test jcv- First 2 test were thru the Strata study and this last Quest labs.

So.... YAY ! jcv-.

In a previous post I answered a ? from RW saying my last test had been 11/2012-WHOOPS-how about 11/2011

Linda

Do you know if they tested her for JCV antibodies yet Amy? I am curious because the test is not limited to Tysabri patients, it's for use for anyone on any drug that has risk of PML. I am guessing that your mom has been on many drugs for both RA and scleroderma. I think the concern about previous immune suppressants has or should have been taken into account by her doctor who prescribed the Rituxan, but it wouldn't hurt to ask questions if you are involved in assisting her with her health care choices.

I was in my infusion center and overheard the nurse in the cube next door doing the standard talk to a patient who was starting Rituximab. It sounded a lot like the Tysabri warning, but seemed to have more side effects listed. I do know that the patient had some sort of reaction during his infusion, but have no details on what was going on other than there was a commotion. I do know they resumed the infusion at a slower rate and gave him IV Benadryl just like they would with Tysabri.

Please let us know how it goes for her. I hope it helps!

Mom did great yesterday. They gave her a steroid drip to start with, along with Benedryl I think?, and boy was she talkative last night!! It was a long day for her, but with the 'roids'....she did great. She goes in for another infusion on May 2nd, then another 6 mos from there.
The side effect list does seem much longer than Tysabri, but so far she is doing really good, she even went to a support group meeting last night!

Amy, I am glad your mom did well!
I went back over the chart I had referred to. It was presented by Dr. Timothy Vollmer of the RMmsC. It showed that Tysabri has a risk factor of 4 and Rituximab a risk factor of 1. I just wanted to check on my info and make sure I wasn't stating what I had learned at the seminar wrong.
Linda

Today was my 67th infusion I did have 1 problem-I forgot my book, first time in 5 yrs 7 mths
Linda

Hey Linda,

Congrats on the 2 JCV negative tests. That must be a HUGE relief.

And wow, you are up to #67? Sounds like things are going very well for you.

Natalie

Hello all, having my first flair-up in 2+ yrs. cause I got off of Tysabri about 5 Mo. ago. It was doing such a fine job for me too!
But.... I've had 18 or 19 skin cancers cut off in the last few years which ain't no fun either, My M.S. Doc says the Tysabri exacerbates skin cancer in some people, so he said it was time to quit. After a few mo. break I went on Copaxone (3 mo. ago). Its not working so well!!!!!!!!

TWO QUESTIONS......
Anyone else ever have, or hear of a skin cancer isssue with Tysabri?

Anyone doing a lower dose, or less frequent infusion of Tysabri?

I REALLY FELT BETTER WHILE USING IT!!!!!!!
But the Frankenstein look dosn't really work for me either.

All comments welcome, I'm new here.
Dave

I went to see new neuro and she wants me to start ty. Is there any pain?? Of course she said no but I hate needles. What can I really expect? What's the down time after the infusion? I know that I won't really know until I experience but any information would be greatly appreciated.

Hello

I am up to about three and a half years on Ty, and I have to say that although the cannula insertion can be a little yucky if they have trouble finding a suitable vein, there is no pain with the infusion.

As far as down-time goes, no problem at all. I just jump in my car and drive myself home straight after the infusion, and apart from feeling a little tired that night (which could also just be because I was tired anyway) I am fine.

One of the ED doctors where I go offers a little local anaesthetic if he thinks it might be a little tricky to get it in. He is my favourite

Good luck and let us know how you go

Cheers

Lyn