Rituximab iv and intrathecal with valtrex

A board to discuss the anticipated multiple sclerosis treatment Rituxan.

Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Sat Apr 19, 2014 12:52 pm

Hey anon, and everyone else,
Just a quick update for me....
I did 1000mg rituxan in March then 500mg 2 weeks later (couldn't afford 1000mg again)
My eyes are slightly better. I am still exhausted though (as mentioned I did have this pre rituxan)
I still have brain fog issues. I started valtrex 250mg 4 days ago and brain fog got worse but feeling a bit better today.
I will take 500mg valtrex once I feel a bit better (and if I can get repeat script)

L
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sat Apr 19, 2014 2:38 pm

LR1234 wrote:Hey anon, and everyone else,
Just a quick update for me....
I did 1000mg rituxan in March then 500mg 2 weeks later (couldn't afford 1000mg again)
My eyes are slightly better. I am still exhausted though (as mentioned I did have this pre rituxan)
I still have brain fog issues. I started valtrex 250mg 4 days ago and brain fog got worse but feeling a bit better today.
I will take 500mg valtrex once I feel a bit better (and if I can get repeat script)

L

So glad you are okay and that your eyes are getting better! Hope that exhaustion takes a hike soon too. I'm struggling with it again after I doubled the valtrex and messed up my copper with vitamin c. It's not horribly bad but my get up and go turns into get down and stay after about 3-5 hours. I rest for about 30 minutes and I'm good again. Annoying!

Funny you have issues with valtrex too. Scott1 is fine on 1000mg/day. They did a high dose study in msers with valtrex and didn't mention any issues. At least I have you to confirm I'm not just a freak of nature with my sensitivity to it. Just take what you can. I've been reading up on it and it seems to build up and stay in your system longer if you take it for a long time. My prescription management company won't pay for it after June. That'll be $421/2 months for 500mg/day. I need to shop around!

Keep us posted. I was worried about you!
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Sat Apr 19, 2014 2:56 pm

Xxxx I'm fine:) got so much on at the moment that haven't had time to come on here.
Hoping the rituxan makes the MS calm for a bit.
I had my bloods done last Monday to see if my B cells have depleted at all, will keep u posted xx
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Tue Apr 22, 2014 6:20 am

Just wanted to post an extra note....got my blood results back for b cell depletion today. There were no detectable b cells in my blood so rituximab has done what it was supposed to.
Now I suppose its a wait and see approach if it has a positive effect.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Tue Apr 22, 2014 12:49 pm

At least that part is done. :) The wait and see part stinks!! Hope it goes well for you.
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Wed Apr 30, 2014 10:06 am

Hey all
Just wanted to let you know I have had some improvement with my sight....its much better, shadows improved and general fuzziness better.
I'm on 500mg valtrex and that coupled with the rituximab seems to be having a positive effect but its early yet to get too excited.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Apr 30, 2014 12:42 pm

Good news! I hope it sticks. My vision issues have failed to return since rituxan...almost 7 months since first infusion.
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Wed Apr 30, 2014 1:09 pm

Thanks anon xx do you mean your eyes are worse or better?? X
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Apr 30, 2014 1:14 pm

Better!!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sat May 03, 2014 1:40 pm

Yesterday the sun gave me what I assume to be another calcitriol burst (ouch) and I'm wondering if Valtrex isn't to blame as a few cases of hypercalcemia have been reported in association with valtrex. So, I'm taking a break from valtrex starting tomorrow. Can't stay out of the sun all spring/summer!

Circumstantial evidence (labs that can be connected in a tangential way) suggests I *may* have become b12 deficient. Unfortunately, by sheer coincidence, I started supplementing high doses about a week before I tested my b12 with no washout. It goes kind of like this...Monday's labs showed my TIBC dropped like a rock relative to 3 week old labs even though ferritin and iron dropped as well (which knocks low tibc due to chronic inflammation and my labs came back with low CRP anyway). I had started supplementing b12 sublingually on Saturday. Pernicious anemia can cause low TIBC so I tested for all that on Friday. Friday's labs showed my TIBC had risen significantly (196 to 238) with no other changes in regimen. B12 was 1296 (no washout and taking 5000mcg+ daily for about a week). I'm still waiting for mma results. So, I guess b12 might be another thing to monitor post-rituxan.

Still doing well LR?
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Mon May 05, 2014 10:01 am

Hi anon,
Still doing well vision wise with some brain fog issues still occasionally, bladder with some urgency which is intermittent. (Had these pre rituxan)
I will take some extra b12 too just in case. I might get my blood checked at some point to see how I'm doing iron/vitamin wise.
I'm currently taking...pregnelone 150mg, inosine 500mg nag 1500mg, vitamin c 2000mg, progesterone (natural and synthetic) and all the usual folic acid vit d etc as well as. 75mg aspirin and levonox/heparin.
I know rituximab and valtrex are def helping as the above alone had no effect with healthy diet too but I can see real improvements post rituxan.
I'm going to get checked again for JC virus soon and will think about another dose October or Jan next year.
Are you planning on having another treatment?
Last edited by LR1234 on Mon May 05, 2014 10:28 pm, edited 1 time in total.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Mon May 05, 2014 12:45 pm

Hi LR,
Glad the vision improvements are holding.

I'm not planning any more infusions in near future. For me, this was meant to be a one time thing...or maybe every five years or so depending on csf labs (if anything changed there).

My copper/ceruloplasmin dropped after my calcitriol burst on Saturday. Low copper/ceruloplasmin has it's own special feelings like calcitriol does for me. So, I'm thinking the valtrex might be to blame for that problem too (first causes high calcitriol which somehow eats up copper...can't find anything scientific about that theory). Bummer. I'm not growing extra brains with all that copper. Lol. I wonder if it isn't connected to the iron deficiency too. If valtrex is the cause of all those issues I should be back to normal pretty quickly since I stopped taking it. :)

Take care and if weird stuff starts happening, you know what labs to have done!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Tue May 06, 2014 9:04 am

MMA was normal @ 77 Nmol/l range 0-3xx. So I have no idea what went on with b12 or if anything did.

Its seeming more like the valtrex was the cause of my copper issues. It takes up to 72 hours to clear your system if you take it long term. Saturday morning was my last dose. Sunday and Monday I needed to take copper or feel weird. Today, I don't need copper (yet) and even took some zinc without it causing me issues. I'm going to try to washout on copper for a week or two and retest copper/ceruloplasmin as I'm a bit worried all that copper I was taking was being deposited where it doesn't belong while my ceruloplasmin was low. If my ceruloplasmin comes up, it should clean up any deposits and increase my serum copper levels.
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Sat May 17, 2014 11:56 am

Eyes still improving, on valtrex 500mg on one day and next day acyclovir 800mg next (as acyclovir is so much cheaper)
Feeling pretty well, not MSy at all at the moment:)
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sat May 17, 2014 1:33 pm

That's great, LR! So happy for you. :)

I only made it 8 days without taking copper. I'm back on it again. Maybe it had nothing to do with the valtrex? I do feel better not being on valtrex though...just in general, nothing specific I could pinpoint.

Hope the good stuff keeps coming your way!
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