Rituximab iv and intrathecal with valtrex

A board to discuss the anticipated multiple sclerosis treatment Rituxan.
LR1234
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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Sun Sep 07, 2014 1:20 pm

Hey Anon,
Its hard to tell with MS sometimes if you are going backwards or forwards:/ I hope this is all part of the healing process....only time will tell. I really hope your MS all goes in a positive direction xxx

As for me, Im doing really well, my eyes are better again (I say better not 100% normal but better for me) I have so much energy too, I don't feel MSy at all at the moment:) Im taking acyclovir daily (800mg) as I can't afford Valtrex (been taking this for a while and seems to be helping along with my copaxone and enoxaparin for blood thinning) I still drink about 3 salads/green smoothies a day and that is helping too.

I think rituximab has been amazing for me so far and my decision is whether I need a top up soon or hold out till I relapse or feel ill again?? I might just get my B cells checked to see if they are restored and if so I will probably redose November/December

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Sun Oct 05, 2014 2:32 pm

I've started getting daily headaches, muscle tension in neck and shoulders, and not spasticity but the feeling my leg muscles are ready to jump at any moment. All were non-responsive to aleve and magnesium worsened them. Bizarrely, calcium made them go away the first time I tried. The next time required calcium plus d so I've swapped to a bone builder and no more headaches/muscle tension/verge-ness. Energy (or is it inspiration?) has been a bit boogered up and I've had some brain fog. It seems b12, b complex, and iron are getting that back to normal but only started them last night/today. I don't know if these issues are consequences of the rituxan/valtrex or ms acting up again. I'm just glad I can make them go away. I should get bloodwork done to see what's going on...

I'm glad you continue to do well, LR. :) In the back of my mind, I'm tossing around the idea of re-dosing but I really never wanted to do rituxan long term so I think I'll have to feel a lot worse before I decide to do it again. How many rounds will your doctor allow? The usual 2 years/4 sets?

LR1234
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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Wed Oct 15, 2014 12:59 am

Hey Anon, watch out for the vitamin D....I was taking between 5-10K a day and I think it gave me bad brain fog (I would stop taking it for a while and get your levels checked)

Im still doing really well;) had my B cell levels checked a couple of weeks ago and at almost 6 months they are still at zero??? don't know if its a good or bad thing but I feel great for it. Im still on Antivirals (400mg in total a day) plus copaxone.
So no redosing for me yet,,,,

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Thu Oct 16, 2014 2:12 pm

Hi LR, thanks for the warning re: vit d. I'm always conservative with it these days so I was only taking about 500iu/day plus 5k every 3-4 days. I just had labs done and I am just a bit low so probably need to keep it up. That's great that you continue to do well...maybe it'll last forever. :D I think b cells are supposed to start coming back at about the 6-9 month mark. I've not had mine tested but I suspect, based on my labs, they are still pretty darn low. My globulin is still just above the low end of normal. I guess that is supposed to be a measure of antibodies...few b cells=>few antibodies?

I really messed up with whole copper thing. My labs indicate my copper level is optimal. Unfortunately, my ceruloplasmin is still just above the low cut off and I've got more than twice as much non-ceruloplasmin bound copper running around than I should. I've even got the cool Kayser-Fleischer rings on my irises (which were not there before...I checked!). 8O So, I'm about to start high dose zinc acetate to try to kick the free copper out. At this point, I don't think it's Wilson's disease, as I've never had a copper problem before. I'm guessing the rituxan caused low ceruloplasmin and ferritin (both acute phase reactants which might be depressed when you're immune system isn't causing acute phases...or something). The Valtrex must have been messing with my copper too as I couldn't get those lab numbers up and staying up while I was taking it. I stopped supplementing loads of copper over the summer (after I quit Valtrex) and my serum copper shot up anyway. Live and learn.

Despite my copper graffiti'd eyes, I'm still doing great. Headaches and all of that are gone even though I stopped supplements a week or so ago. Neuro appointment went well. Everything MS looks good and it seems like he's *starting* to kick around the idea of doing it for another patient...

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Sat Oct 25, 2014 10:57 am

Bad news. I checked my 2012 and 2013 MRIs. There's been a giant panda hiding in my brain this whole time. Looks like I probably have asymptomatic Wilson's disease. I need to follow up with doc.

Good news. If I do have Wilson's, all this copper/ceruloplasmin nonsense has nothing to do with valtrex or rituxan...except I do think valtrex was hiding my copper somehow. So all of that rambling can be ignored. :)

Good news. Wilson's disease is very treatable and might be associated with a milder progression of ms...seems like that's the case for me so far.

Still doing well ms-wise despite some bleh-factor from the high doses of zinc I'm taking.

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Fri Nov 14, 2014 9:54 am

Wilson's Disease has been ruled out by an eye doctor and hepatologist (yay!). The rings on my corneas are calcium, not copper. I guess the giant panda face in my mri is just a random thing.

Next stop is an integrated medicine doctor who specializes in candida. Candida could cause the vitamin d and copper issues. I've never had a yeast infection in my life so it's a long shot. I did do CAP for 3-4 months in 2012 though. That would set me up for candida issues if anything would. And maybe the rituxan suppressed my immune system enough to allow it to get worse?

Since megadosing and stopping zinc, some sensory symptoms have flared up. Magnesium makes them worse and I can't tolerate vitamin k2 (mk7) either. It doesn't feel like my ms symptoms. But who knows, maybe they've changed?

So...I *think* my ms is still doing well but I can't really say for sure. Maybe I'll have a better idea if I figure out the rest of this stuff.

LR, still good?

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Sun Nov 23, 2014 7:02 am

Thought I'd post before I forget this...

I have no idea if this has to do with rituxan or not but after a couple doses of sublingual b12 the sensory symptoms abated.

My eyes are still better in fluorescent lighting and I don't get the dark spots in my vision when I take a hot bath. I do get more eye fatigue/blurred vision. This is new and could be completely unrelated to ms. Hands still don't start burning with activity. Right hand is slightly better sensory-wise than pre-rituxan. Left hand is about the same or a bit worse at times. Energy has been lagging a bit since my zinc megadosing. My ferritin was getting low in October and I've not started iron (waiting for upcoming doc appt to address or not) yet. So, that could be the cause of lower energy.

I'm thinking a doctor well-versed in deficiencies and other blood irregularities would be highly valuable at all times but especially when undergoing rituxan/more aggressive therapies. I'm amazed that so many issues I've had post-rituxan have been influenced by my haphazard supplement tinkering. I imagine things would have gone much better with a pro steering me. I guess if I give it another go, I'll be wiser. :P

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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Sun Dec 14, 2014 11:23 am

Hey Anon, Im still doing great:) I do feel my bladder is playing up a bit at the moment with urgency issues but not sure the reason...I don't feel like its progression or anything just my bladder goes through phases sometimes.
My eyes are still improving, I still have little to no fatigue, in general feel pretty normal:)
Organising next B cell count for Jan and that will decide when I have my next rituxan dose (I say when but if my count still at zero then it won't be for a while (which is good as its very expensive for me and not covered by insurance:/
Im lucky I only needed 1500 and not the 2000 to wipe my B cells out. (I m still on acyclovir,copaxone, the pill, green smoothies daily)
How you feeling? I have read your account above and I hope your eye fatigue/blurriness gets better.

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Thu Dec 18, 2014 2:24 pm

Hi LR,

So glad you're doing so well. I'm a bit jealous of your B cell count labs. Doesn't seem to be an option with my neuro.

I'm seeing an integrative medicine doc in hopes of nailing down the source of my copper/iron/blah blah issues. She's big into candida so I'm being treated for that for now...mucking through the die off or ketosis or whatever the diflucan, coconut oil, and anti-candida diet are doing to me. So, I'm tired and sore and dying for an apple. Lol. I haven't a clue as to whether it's ms or this treatment that is causing the symptoms. So I'm still in purgatory/dunno land.

Since you're doing so well, I think I'll blame my issues on candida/the treatment. :P

Stay well!

Edit: unfortunately I still have the eye fatigue coming and going.

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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Tue Dec 30, 2014 1:32 pm

Just wanted to post that last night I started to get optic neuritis pain in my left eye (been hit by ON in that eye 5 times previously) I took 30mg codeine then today 15mg of prednisone and it seems to be stable although pain still there a bit. Over Xmas I've really been burning the candle at both ends and eating dairy again (mmmm chocolate) I'm usually dairy/gluten free but the holidays meant I've been on sugar too. I hope this won't turn into anything and will calm itself (I've also not taken my copaxone or acyclovir properly the last week)

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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Thu Jan 08, 2015 12:24 am

Disaster averted, all seems to be well again. No ON and feeling fine. Family have bad colds so maybe my body was fighting that ;even though I didn't actually get ill.

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Fri Jan 09, 2015 8:08 am

Glad things are all better. :)

No news here. Still plugging along with my anti-candida campaign. It seems like it might be connected to new symptoms but I keep increasing doses, adding, and switching anti-fungals so I'm often exacerbating things with die off.

I hope things stay good for you. I once read a blog of someone who had one single round of rituxan. Her MRIs had no changes after three years. So, based on almost nothing, I'm giving myself three years to not worry about needing another round. :P

Be well.

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Re: Rituximab iv and intrathecal with valtrex

Post by LR1234 » Thu Feb 05, 2015 4:13 pm

Relapse:( thought I had strained rib as really painful but 3 days prior I had pulling, stiff, tingly spine and I now believe the pain is actually coming from spine and affecting nerves in muscles/ribs:( taken steroids today and codeine so hoping that will help (gonna take em for a week) also had come off the pill 3 weeks ago so I believe hormones really do play a part in Ms or it could just be a coincidence??? Hoping to sail through the other end of this relapse... Def feel like lesion forming in mid spine as it feels like one gggrrrrrrr due yearly rituxan in March (really believed though Ms had gone as had been feeling normal! Hope you are all doing ok x hope you are ok anon

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Sat Feb 07, 2015 5:44 pm

So sorry to hear that LR. Are the steroids helping? I'm stubbornly hoping its just something that feels like a relapse but isn't one.

I'm still doing great. Still working on candida (and apparently other yeasts if biomeridian "stuff" is worth more than I suspect) but I don't feel bad at all from the supplements anymore. It will be interesting to see what the biomeridian recommendations do to my labs.

Anywho, I've been going 8+ hours a day for more than a week refinishing woodwork that our contractor left damaged/bare. Before that was major spring cleaning...or should I say late winter cleaning? PSA: Don't ever try using polyshades by minwax. :bang head on concrete wall: When I finish the woodwork, I'm geared up to seal and paint our windows that have been new and nude since installed in fall 2012...time of diagnosis and beginning of self-guinea pigdom. Somewhere in there I've got to start my garden seeds and plant our garden for the first time (moved here late 2011)...I think I'll learn how to stain/stamp concrete too... Fun stuff...the bigger point being I'm not at all physically limited by fatigue or other ms nuisances.

At least your next round of rituxan is coming up soon. Maybe you need to schedule it sooner next year?

Get well. Be well!!

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Re: Rituximab iv and intrathecal with valtrex

Post by Anonymoose » Mon Mar 16, 2015 6:02 am

Spoke to soon. :P

New numbness (old new numbness) and fatigue great enough to stop me from being wonder woman crept back within a week of stopping diflucan. My follow up biomeridian testing was also ummm not helpful. So...I won't be paying for that again and I'm back to herxing (sensory issues and monster fatigue) as I go after the candida that must have been in hiding when I was on diflucan. Things are improving faster than they did the first time around so I guess that's good.

Has your relapse cleared out yet, LR?

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