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Hopefully I am jcv negative so we can proceed in October.

If all goes well, we'll be following standard protocol for ebv-related post transplant lymphoproliferative disease, systemically and in CNS. 375mg/m2 i.v. and 15mg i.t. (might increase) once a week for four weeks. It will all be done in his office. How convenient.

Have I mentioned I love my neuro?

Ok...

Good luck!!! I hope that does everything you want it to do. There is no doubt it's an effective drug, although I think its mechanism is direct immune suppression.

http://en.wikipedia.org/wiki/Rituxan says that Rituxan depletes B cells and that known side effects include deaths from PML.

You and I have a different risk benefit analysis. Rituxan and Campath are on my list to consider trying if Gilenya doesn't work out, i.e. if things get much much worse, but I really hope something better is available before I would have to make that choice. Thinking about taking anything that risks a second brain disease makes my stomach knot and my skin crawl.

I'm a little confused that you stopped the drug you said worked well for you because it was immunosuppressant and follow up by choosing Rituxan.

I look forward to hearing about what you do and how it goes for you. Again, good luck.

I think it is great to get approval. I received approval a few weeks ago (took forever!) and will get the first infusion on July 22. I am worried about the side effects and if i will be able to return to work the next day.

CaliReader wrote: I'm a little confused that you stopped the drug you said worked well for you because it was immunosuppressant and follow up by choosing Rituxan.

I look forward to hearing about what you do and how it goes for you. Again, good luck.

Thanks calireader,
It is a pretty contradictory thing to do. Lol. I chose the Ptld way because it isn't long term immunosuppression (which I will no longer do...currently experiencing fever, body aches and fatigue as my immune system tackles whatever was having a party while i was blissfully unaware on feno) and as far as I can see its currently the only treatment that reliably seriously cuts down on ebv load. If an hsp90 inhibitor ever hits the market, that might be a safer alternative.

I will definitely share results though it will be hard to separate the ebv/immunosuppression impacts for a long time, if its ever possible.

I hope the gilenya works for you too!

After reading up on tendency for ebv to repopulate after rituxan, I think I've decided nutritional supplements and other alternative methods won't be strong enough to carry me through my immunosuppressed stage after rituxan. I need something else...

I stopped Feno completely on the 12th. I was sick so I figured I may as well relapse while I was feeling crummy anyway. No signs of relapse so far and not so sick anymore but maintaining low grade fever.

Sooo, since I am now med free, I'm going to call neuro this week and ask for valtrex to stop replication of lytic ebv and will hopefully be able to continue for at least two years after rituxan treatment. I'm wondering about appropriate dosage. Scott1??? 1000mg/day now and after?? What do you think? (Thanks for the valtrex/avonex thread. Very helpful!)

I am thinking of doing a similar thing after I have tested myself on tacrolimus.
I was interested in rituimab followed by valtrex. Let us know how it goes x

LR1234,
I'll post how it goes. I'm jcv negative. Yay! But my neuro wasn't keen on valtrex and only prescribed 1 weeks worth. I've sent an appeal to him.

I'm glad you are handling the amiloride well at 5mg...I've been curious and hopeful about that treatment. A bunch of guinea pigs we are. Keep us posted on that one too!

Neuro agreed to longer term valtrex and gave me a two month prescription. I gradually built up to 500mg 3x/day. I don't understand how (because valtrex is supposed to only inhibit viral replication) but I am herxing...the same way I did on the antibiotics less the brain fog and really debilitating fatigue. Whaaattt?!

Being that I am on solo road trip adventure w the offspring and I didn't pack any moppers, I'm taking a valtrex break until we get home. Hopefully the numbness and pain will back off quickly.

Then I need to regroup...

Hi anon. I thought the dose for valtrex was 500mg once daily?? Maybe it's just too high dose ??
I don't think I will attempt intrathecal rituximab but I'm looking into regular iv doses atm.
I know there is a risk of pml with rituxin like tysabri but do we know the amount u can take before it becomes a risk? With tysabri they say jcv positive monthly infusions over 2 years increases risk.
With rituxin is it 2 doses then nothing for 6 months? I wonder at what point it becomes a pml risk.

L x

LR1234 wrote:Hi anon. I thought the dose for valtrex was 500mg once daily?? Maybe it's just too high dose ??
I don't think I will attempt intrathecal rituximab but I'm looking into regular iv doses atm.
I know there is a risk of pml with rituxin like tysabri but do we know the amount u can take before it becomes a risk? With tysabri they say jcv positive monthly infusions over 2 years increases risk.
With rituxin is it 2 doses then nothing for 6 months? I wonder at what point it becomes a pml risk.

L x

Hi Lx,
Valtrex is dosed at different levels. I think 500mg/day is for protection after immunosuppression/chemo. Higher doses, up to 5000mg/day is sometimes used for active infection and chronic fatigue. Scott1 has taken 1000mg/day for years and thinks it helps so I tried just a bit up from his dose. When I stopped taking it, the pain stopped so I think my neuro symptoms are related to the valtrex. I'm still experiencing big time numbness in legs and feet and have a bit of an ms hug though. But I could still climb mountains and cross rivers and go all day. Exacerbation or pseudo?! I think I'm staying away from valtrex until after I do the rituximab (IF I can get it) and then I'll stick with 500mg/day.

Most of what I have read about rituximab and PML is related to long term use for RA. I think they get pretty regular infusions. Since I'm trying to get just one group of four infusions over a month, I'm not too concerned about PML. I would definitely be more concerned if I were looking at long term B cell depletion. The tysabri 2 year rule might be a good one to use.

I wish the folks who had done rituximab years ago would post updates. I wonder if their jcv levels went up and if they experienced lasting benefit. It seems like there must be some lasting benefit because rituximab is still being studied for ms.

I thought you had a date for your first infusion. Did I imagine that?

No I have no date for infusion yet....

I wish other people will post too about experiences with rituxin would be good to know

.

Congrats:) I had JCV test on Tuesday, got to wait 4 weeks to find out if I am + or - for the virus.
Are you doing intrathecal infusions or IV? how many doses etc?
I am hoping for 1500 split into 2 doses 2 weeks apart (I react badly to meds so although 2000 is the recommended I think 1500 is enough for me......we will see.

Let us know how you get on x

Thanks LR,

My protocol will be:
Week 1 700mg I.V. and 10mg intrathecal
Week 2 700mg I.V. and 15mg intrathecal
Week 3 700mg I.V. and 20mg intrathecal
Week 4 700mg I.V. and 20mg intrathecal
Then no more rituxan...ever (I hope)

I will start taking 500mg/day valtrex on day 1 continuing for at least a year if neuro is still on board with it.

Also, I plan to take supplements that allegedly fight ebv for the rest of my life.

After a year straight of messing with different meds, I can't wait to get this done and just live for a while. If all goes well, I may even pretend I don't have ms.

I hope your jcv comes out negative and you can join me on the rituxan train. Where did all the rituxan people go???!!!

Best of luck. Rituxan is supposed to be one of the very most effective treatments currently available. I'm not ready to go there, but if nothing better is available in a few years, and I find a cooperative neuro, I might. I look forward to hearing about it.