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 » Sun May 18, 2014 10:15 am

Maybe I need t do a full vitamin mineral blood work (plus liver) my liver is always affected when I take meds..... Why did you suspect copper deficiency???

I'm thinking of lowering valtrex to 250mg to be on the safe side long term and 400mg acyclovir on the non valtrex days) but I feel so well atm it's not tempting but I think important not to OD.

I'm so pleased my eyes are better. I reckon 85% normal! I went down to 50/60% long term after recovery of total loss if vision in left eye 5 times. I dont understand how vision can improve after optic nerve is damaged???? I thought that was that but I def can see better and it's like a year and a half later after last attack.

How are you feeling anon MS wise???
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sun May 18, 2014 1:04 pm

85%?! That's incredible! If whatever you are doing is working, don't change based on my strange experience. I think valtrex always gave me a calcitriol problem and I did the intrathecal rituxan too so my mess is probably different than you would have. At least pull labs to see if there is a problem before you change things up.

I tested copper because I took it on a whim one day and my hands felt better. Dumb luck. :P

I have no idea how I feel ms wise. I'm still on that rollercoaster. Are my symptoms ms or micronutrient related? Beats me. Energy is good and staying. My eye issues are still at bay. Hands get better, then worse, then better, then worse...I know my calcitriol, copper, and iron levels influence that but maybe it is just ms at the core? The sun is still getting me a little bit too. It did this last summer for several weeks after I quit valtrex the first time so maybe I'm still not back to normal on that front.

Stay well!!
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Thu May 29, 2014 1:10 am

So in the spirit of reporting good and bad eyes gone a bit downhill again:( knew it was too good to be true.better than they were originally but not as amazing as they have been. I had 6 sleepless nights recently due to stress so I'm thinking that probably contributed. I still get bouts of eye pain and always have dry eyes....this has been a major problem if mine accompanied with the vision loss stuff.
In general energy great, feeling well looking forward to chilling out a bit now:) hope you are all doing ok.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Thu May 29, 2014 7:44 am

Hi LR,

Sorry things are slipping a bit. Disappointing. :(

I'm much more stable off the valtrex. I'm not taking any supplements, can get some sun, and nothing flares up. So far, hands are slowly and steadily improving but could turn for the worse any day. Eyes are still issue free. I've been pushing myself physically and can keep going hard from 6am until about 3pm (unbelievable amount of backed up work around here and I'm prepping for a couple of major life upheavals). After working all morning, I don't feel tired at all but if I still myself for a bit, I can't keep my eyes open and wind up taking incredibly awesome naps and then wake up and get back to work until 9-10pm. I dumped scalding pho broth on my worse hand a few days ago. Oddly enough, it seemed to make my hand feel more normal. What's up with that?!

So...I think all my issues were caused by the valtrex. If you keep slipping, you might try taking a break for a month or so to see if that makes you feel better. Wish I had figured that out sooner!! (Hehe...I could be wrong AGAIN!)

Hope the good stuff comes back!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Fri May 30, 2014 7:56 am

FYI. It seems the valtrex has messed with my cycle as well. I had cycle issues (a never experience for me) last summer after I took and stopped valtrex too...and blamed resveratrol. Doh!
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Fri May 30, 2014 8:53 am

:( I've shut down my cycle since jan this year as I have endo and I believe the inflammation and pain was aggravating the Ms.
I've cut back to 250mg of valtrex but I don't think my vision worsening is down to that but stress and also not been taking my aspirin 75mg which I'm gonna go back on.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Fri May 30, 2014 9:15 am

I hope you are able to find a way to reduce stress. Unfortunately, that is always easier said than done. Wish I could help. :(

Stress and menstruation used to always make my ms worse. They don't anymore (hadn't noticed with all that other weird stuff happening). Maybe the rituxan is working?
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Mon Jun 09, 2014 7:55 pm

The last couple of weeks have been wonderful. I feel like I did when I took fenofibrate. I can do heavy work all day long and the only consequences have been sore muscles and a deep sunburn (didn't feel the calcitriol ouch). Today, an easy day, I cleaned the house, did a bit of laundry, set up new dog enclosure, swept the outside, had a nerf dart war, did miscellaneous and grocery shopping, cooked dinner, played basketball, and ran out of things to do before I ran out of energy.

I can't feel that my copper is low in my hands but I've started getting "low copper blemishes" again in the past few days. They are horrible little mountains of infected (I guess) pores that will not heal no matter what I do...except take copper. So, I've just started tinkering with copper supplements again. I probably won't test levels as I'm off for an extended (active) vacation this week and will just take what I need to keep my face clear and feel good. I won't be spending my days obsessing over levels. :P

Everything has felt pretty normal. My hands are ever so slowly getting better...can't tell a difference from day to day but can from week to week.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Fri Jun 20, 2014 4:54 pm

I can finally report something is definitely better than before rituxan when I wasn't on meds (fenofibrate or clonidine). I've always been able to hike at a good pace (unless unwell like I was on antibiotics and valtrex). But anytime I exerted physical effort, my hands would act up and heat/sun would drain me of energy. I've been hiking my way up the country on 3-7 mile trails (easing myself back into it) with 500-1000ft elevation increases and nothing flares up. :D Did a 7 miler in sun and mild heat for a good part of the hike yesterday with a 1000ft climb and descent in about 3:15...basically dragging my young, healthy son along. I did indulge in a good snooze later though. :) Looking forward to more difficult trails.

I'm only taking a multi now. Up at 5am...busy exploring all day, most days...down at around 10:30pm.

Oh. I've been puzzled by something. I'm a little bit sore but nothing like I would be after hiking after months of being sedentary before rituxan. I wonder if ms inflammation doesn't make everything feel a bit worse?

How you doing LR?
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Wed Jul 02, 2014 3:28 am

Hi Anon,
Good to hear you are doing ok:)
I'm ok too.....don't feel MSy or tired, feel pretty well.
Eye issues aka vision are still up and down, some days I feel like I can see almost normal (well normal for me, who knows what real normal feels like lol) other times I feel it's a struggle to see. Overall though much better post rituxan than pre. My blind spots have lessened as has the dry, painful eyes.
Lok un gat re dosing October if possible. Gonna get my bloods checked next week for B cells count, auto immunity, vitamin d (as it's been a while) prob blood counts, kidneys, liver etc.....
Hope you are ok, chat soon x
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sat Jul 19, 2014 9:17 pm

Hey LR :). Glad you are doing pretty well for the most part...not ms'y but things come and go? That's pretty much how I've been too.

I've been on a trip for 5+ weeks going pretty much non-stop...hiking, exploring, and doing dorky tourist things (has anyone else tried to see what the Oregon vortex/kooky suspected location of grains of dark matter would do to their ms? Lol). Energy lulled on two days, separated by weeks. I think I was just tired as any normal person would be. Hands screw up and get better at seemingly random times. I think I've still got some deficiencies going on but haven't tested anything. Even though I certainly haven't regained all sensation and might even be worse at times, I can do more than I could even before my diagnosis and first exacerbation and I did discover, by feel, some buttons hiding on the underside of my steering wheel and can feel seams in thin fabric (I used to have to run/click my nail over fabric to discover seams without looking). These "new" sensations have surprised me and developed/refined over the past 5 weeks so it seems like whatever rituxan did is still having an effect. Works for me.

Hope you keep feeling not ms'y!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Aug 20, 2014 7:31 am

Energy has been waning a bit over the past month. It could be the ms or it could be due to the fact that our remodel contractor sucks donkey dongs (there is no polite way to describe this man/situation) and we are all still stuck in the basement, unable to live with any sort of normalcy. So, over a month of tourist madness and over a month stuck in a small ill-equipped space with three humans and three dogs, anyone would be a bit burnt out/tired, right??

Some sensory symptoms have been revving up as well too. This time they seem to be quelled by taking b complex twice a day (not b12 on its own). The b complex is helping with energy too. So, come October, I'll be seeking out some iv vitamin/mineral infusions like the Myers cocktail sans calcium. I'm not going to bother testing any levels now as they will just have to retest in October prior to infusion.

I'm now debating whether or not I should have csf tested again. If tysabri can eliminate oligoclonal bands without eliminating ms (as evidenced by massive relapses experienced by many after discontinuing treatment), I'm not sure there is any value in that data.
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Re: Rituximab iv and intrathecal with valtrex

Postby gator871 » Wed Aug 27, 2014 5:53 pm

I need some help/info. I was turned down by Dr Burt and was wondering if anyone on this page has heard of Dr Frohman in Dallas who is using Rituxan (Rituximab) in combo with blood plasma treatment? I hear he is having great results with PPMS patients. He is having luck getting insurance to pay also. My Neuro here in Orlando referred me to him (he saw him speak) but he is not taking new patients now. I can not find anything on his protocol on the internet or his webpage. Anyone know anything about him and the whole protocol and what he does? All I know is what my Neuro said. Here is a link to him: http://profiles.utsouthwestern.edu/prof ... ohman.html
Thank you!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Aug 27, 2014 6:58 pm

Hi gator,

Sorry but I don't know anything about Dr Frohman. It might help to post a new topic in either the rituxan or general discussion boards (not everyone reads this thread and your question would be more visible on its own).

Good luck! And please do share if you get the treatment. It's always good to hear about new options. :)
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Tue Sep 02, 2014 8:25 am

Some weird stuff is going on here. The sensory symptoms finally stopped and I'm back to just taking a multi. My right hand feels more normal than before this phase but my left feels about the same. Who knows what that was all about?! It seems like I am regaining tactile sensation (that I didn't realize was gone) but temperature sensitivity in fingertips is still pretty pathetic.

I did yard work all weekend. We have close to three acres with a lot of trees and landscaping that have been completely neglected since I started messing with ms. Sooo, it was a ton of work (and we didn't finish). On the second day, I had to take a lot of breaks and it wasn't even hot. :( Last night, as I was falling asleep, my left shoulder would jump every few minutes. My right shoulder did a few much smaller jumps as well. I've only had that happen with my legs before. Don't know what that was all about either! Maybe it was from using choppers to manually trim bushes above my shoulder line? Or maybe I need to read back through all my babbles to see what supplement it was that fixed the leg jumps last time. I'd rather experiment. :P

Anyway, whether or not all this was worth it is still about as clear as mud. Maybe I've been relapsing? Maybe I'm healing? Maybe both? Maybe I should stop worrying about this and get back out to my little chainsaw. At least I can see progress (good or bad) when I do yard work. :scowl:
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