This Is MS Multiple Sclerosis Knowledge & Support Community

Thanks Cali,
I will, of course, post updates. I don't really expect anything earth shattering to happen. I will probably be a bit sick from the infusions and then nothing will happen. It will only get exciting if/when nothing happens for years. Here's to a whole lot of nothing!

Dosage plan has changed a little to minimize cost/waste.

Week 1 690mg iv 10mg it
Week 2 685mg iv 15mg it
Week 3 680mg iv 20mg it
Week 4 680mg iv 20mg it

Cost will be about $6400/week.

I'm on the schedule! First appt. is October 1st, less than a month away!

My neuro prescribed a whole bunch of dexamethasone as a pre and post medication. The combo of dex and rituxan has been shown to cause 25-40% of latent ebv infected B cells to go lytic (in vitro). Not good! So, I've sent a letter requesting no steroids or short acting hydrocortisone instead at time of infusion. I hope he changes his mind or this could be all for nought. Sigh.

Final price tag for the injections and infusions (less premeds and any other meds added) $24,000. Thank goodness I've been militant about saving money over the years.

Yay! He dropped the dex and the solumedrol he was going to give by iv. I am to take an NSAID instead.

Now I can stop scrambling to figure out what to do about a possible lytic infection and chillax.

Less than a day until first infusion. Did I really ask for four lumbar punctures?! Eep!

Neuro called this am. He's decided that some sort of steroid is necessary to prevent a reaction to the rituxan so he will be giving me solu-cortef/hydrocortisone. At least it has a much shorter half-life than solumedrol or dexamethasone. He also wants to run some yet to be explained tests on my csf.

I've got about twenty hours to figure out if I am going to take anything to address possible lytic activation. Antivirals interfere with rituxan so I can't do valtrex. Maybe resveratrol, thymoquinone, or mega loads of zinc, selenium, d3, and mag? Or maybe I will just stick my head in the sand until all of the infusions are complete. My gut tells me the latter is the best choice. Or maybe I should ask to be poisoned with ganciclovir?? Naahhh.

Sticking head in sand. Will update later this week.

I would take nothing personally.
I think rituxan is pretty hardcore enough and your body will really need some time to deal with it.

Hope you are ok reaction wise with the drug. Please keep us posted good luck xx

Well, that was a piece of cake. 100mg solu-cortef iv, 25 mg benedryl oral, 150mg Zantac oral, 25 mg benedryl iv. No infusion reaction at all except some very mild throat/ear tickling that passed on its own without slowing infusion. I didn't even get sleepy. My nurse was awesome.

Lumbar punctures are only fun if the needle pops in on first try. I had at least 4 pokes...when they miss it feels like your chest and stomach do when you fly down the big drop on a rollercoaster...only it's in your spine and it feels sooo gross (NOT painful). Once I arched my back a lot more (knees and chin to chest), the needle quickly popped in place and there was no more discomfort. I am a bit sore from the multiple pokes though. (I do have degenerated lumbar disks so that may have been the problem). Oh and I got to keep all my clothes on!

Feeling good and waiting for that flu-like reaction to hit.

My lab results posted to my account this am. Apparently my crystal clear (as noted by my neuro and myself) csf somehow turned hazy and has horrible levels of almost everything. Supposedly I have 9! O bands...which correlates with worse disease course. Huh. I thought I had pretty easy ms. I don't trust the results at all. Maybe it's someone else's results or the blood messed mine up. I want a retest but I think the blood could hang around for a while. Sigh. So, unless the change in clarity is explained to me, I don't really feel like any changes from the rituxan can be measured.

Can clarity change as it sits in a vial?

As for rtx reaction, thus far I've had some very light traveling neuro symptoms that only last a couple of hours...a tiny bit of spasticity in a leg, muscle twitch near mid spine and really light partial ms hug, stuff like that. I've been a little tired but mostly I've been a bum and napping a lot because I want to be in good shape for next infusion.

Edited to remove tantrum

So the lab results are probably correct. Bummer. Neuro says they tested tube one which was contaminated with blood...hence the haziness. He said the fluid was clear today but didn't collect it so I didn't see it. This time it only took three tries on the lumbar puncture (my disks and vertebrae have been messed up for years so that probably explains the multiple pokes...you can have the puncture done with a radiologist to limit the pokes but they really aren't that bad).

Absolutely no infusion reaction today except a slightly elevated temperature. It only took four hours this time.

It seems like this will be pretty boring from here on out so I'll only update if something worth mentioning comes up. Otherwise assume all is well and I'm having no noticeable ms activity.

Hey anon
I'm reading your posts with interest so please update when you can xxx
Thanks for posting:)

Don't worry lr! I'll keep up with this thread until I feel sure I've come up with another fail.

No reaction to yesterday's 4 hour infusion. Even though the lumbar punctures aren't that bad, I am sooo sick of them. Thank goodness there is only one left! Yesterday's intrathecal injection was a bit of a bugger. It felt like the 20mg sat in the same spot and my back was pretty sore until I woke this am.

Someone asked about side effects. Fatigue might be one. I don't think I could push through and carry on with every day life but I haven't even tried. I can run a few errands or take care of one physical task and I start feeling a bit out of it and tired so I stop for the day. I have very brief passing sensory symptoms that are becoming much less frequent....haven't had any for 3 days or so. My appetite is off. The only thing I really want to eat is apples. I get a bit shaky sometimes as a result. I get chilled more easily. The first week I could sleep a lot. The second week my napper broke. I never could nap before my first flare so I guess that's a good thing. I think that's it.

My hands are starting to feel more normal. That doesn't mean this is working. Rituxan lowers T cell levels too so it's to be expected. At least I think it is...

That's all for now.

Thanks for the update:)

A couple of changes going on...

-appetite returned Wednesday afternoon and has stuck around since. oink

-felt like a normal person Thursday and most of Friday

-then my pin cushion area (aka lumbar section) went all icy hot and now is mostly hot and starting to wrap around. This isn't the usual passing sensory thing. It's been more than 24hrs. It not one of my usual exacerbation sensations either. Lord help me. If I am regenerating myelin or something like that in that area and I can feel the next LP even more, I am so going to hurl. I'm pretty much hoping it is new damage.

I'm done!! Woo hoo!!!!

I did feel the lidocaine needle a lot more today. But, by some stroke of luck the LP went perfectly today. My neuro didn't even hit a gross feeling spot. I also don't have any discomfort like I did last week. Follow up in 6 months. MRI in a year.

Will post any noticeable changes as they come...

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