Rituximab iv and intrathecal with valtrex

A board to discuss the anticipated multiple sclerosis treatment Rituxan.

Re: Got neuro approval for rituxan intravenous and intrathec

Postby Anonymoose » Tue Nov 19, 2013 11:19 am

Username wrote:
Anonymoose wrote:
CaliReader wrote: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!


You are aware that 17-AGG as well as other hsp90 inhibitors can be readily purchased online for like $145/mg? Too bad it requires lifelong dosage, which leads me to how I found this thread by accident. I was trying to see if combining the incredibly effective hsp90 inhibitors with an ebv antiviral if there is one would work better.

Hi username,
Can anyone buy it? It looks like it's for research purposes only. I haven't looked at hsp90 inhibitors for months and my memory is bogged down with ebv-rituxan now, but haven't several hsp90 inhibitors failed in pre-clinicals due to safety issues? Who cares about the cost and lifelong dependency if it will kill you in a month! Lol. I would wait for one to make it through trials and then some before taking it myself... The primary reason for its development is life-threatening cancer. They do some scary things for cancer. Be careful! (Or am I mistaken about the safety issues?)

There is another thread on TIMS by scott1 that might interest you. He used avonex, valtrex, and some supplement/nutritional things to get ebv under control. Jimmylegs has a thread on optimizing nutrient levels which would help your body naturally defend and repair from ebv. Lots of interesting stuff here!

Thanks and good luck!
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Re: Rituximab iv and intrathecal with valtrex

Postby NHE » Wed Nov 20, 2013 5:21 am

Anonymoose wrote:
NHE wrote:
Anonymoose wrote:I still react badly to coq10. It makes me feel strange within about 20 minutes of taking it. Floaty, dizzyish, and on the verge of not good things. So weird. It's also not recommended to be taken with anything that might challenge the liver like valtrex. So, it's out for good.


What kind of CoQ10 are you taking, ubiquinone or ubiquinol and how much? With absorption enhancers or without? If with, what kind, e.g., phytosome or piperine?

Ooo! Good question. It's ubiquinone with no enhancers. I had taken coq10 when I was doing CAP and didn't have any issues with it. The bottle is long gone so I don't know what form it was. I bet it was different. I took bioperine for Curcumin absorption during CAP too.

Is there a better form to take? I still worry about the liver warning...

Update: since adding coq10 and fatty acids (flaxseed oil, dha-epa) this am the icy hot has returned...new region, has me wide eyed and laughing. Could life get more ridiculous?

I have read that the ubiquinol form is better absorbed. I've been taking a supplement called Qunol which is 100 mg of ubiqunol for the last few months. It contains medium chain triglycerides as an absorption enhancer. I have noticed no effects from it whatsoever.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Nov 20, 2013 7:03 am

Thanks NHE,
I react the same way to ubiquinol (documented in clonidine regimen thread or I would have no clue. Lol). I guess I'm just one of those people who is sensitive to it.

After I got over the initial reaction (3hours), I did get a ton of stuff done and never ran out of energy. Maybe if energy continues to be an issue the reaction will be worth it. I could wake up at 3am to take it and go back to sleep. :P
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Wed Nov 27, 2013 10:42 am

Quick update:

Had a few normal days after the coq10 fun. Then I started having issues with supplements. I think my vitamin d might be too high. That has never happened before no matter how much I supplemented. So I am washing out this week and getting lab work done on Monday. I've managed to get some sort of upper respiratory infection from my germball of a son despite the fact that I kept my distance from him and all he touched. Energy is low which I think can be attributed to nutrient imbalance and infection not the rituxan (well, maybe it can be blamed indirectly). I have increased sensation in areas that previously had issues. Fatigue is my only other big ms symptom and it's apparently not better YET. :)
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Wed Nov 27, 2013 2:03 pm

Hey anonymoose,
Hang in there! Yes children are little germ spreaders lol:)
Glad to hear about extra sensation I hope your fatigue eases up soon,
Rituximab is pretty powerful so I imagine there are going to be lots of strange and new things happening, I hope they are for the better in the end x
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sun Dec 08, 2013 7:39 am

I suppose I should update this. Status still in limbo but I now have an idea as to why I am still fatigued. My iron is at 23. The low number on normal range is 35. Ferritin is also a tad low. Rituxan may have caused this and my veggie status/appetite issues may have exacerbated it.

My d3 did go up but not fantastically. My calcitriol is too high. So, I need to work on that too.

Stamina increasing after a couple days supplementing iron. I can now do several "projects" a day as opposed to one.

My hands feel better but not as good as they did early on. I think this might be iron related. As usual only time will tell.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sun Dec 15, 2013 12:49 pm

Observations of the past week...

-the new/different sensory issues were caused by low iron. They've gone away since supplementing iron.

-I can very easily cause sensory issues with normal doses of supplements...it's not all ms.

-the overhead fluorescent lights in stores and offices have bothered my eyes for a couple years. They don't anymore.

-heat doesn't make my left eye go a bit dim anymore.

-hands are pretty good but not quite as good as I would like. They get a little better every day (they took the biggest hit from the low iron...so maybe they just have a little left to recover).

-energy is great. :D I am human again!
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Sun Dec 15, 2013 4:52 pm

My eyes get real messed up in stores plus my vision is pretty gravelly/hazy:(
Glad to hear you got some improvements there! Looks like things seem to be on the up which is good news (can never get too excited though with ms as it has a tendency to disappoint but cautiously optimistic for you:) xxx
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sun Dec 15, 2013 6:47 pm

Hi LR,

Thanks. Hope is totally in check. :) I'm looking at this as my last foray into the currently available meds and treatments before I go back to just supplements and lifestyle choices. I did pretty well most of the time before I started messing with meds. Hopefully I'll be the same when the rituxan wears off. Maybe in a few years they will come up with something groundbreaking. Until then, I think I will just be a spectator.

You're up for yours soon, aren't you? Good luck! I hope it gives you a break from those fluorescent lights and everything else!
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Mon Dec 16, 2013 8:50 am

I have to wait till feb now to start my meds but hopefully it will pass quickly
Last edited by LR1234 on Thu Dec 19, 2013 3:23 pm, edited 2 times in total.
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Mon Dec 16, 2013 10:07 am

Sorry to hear you have to wait longer. :( At least it won't interrupt your holidays.

My first ms flare was in early 2010. I knew what it was after a bout of peripheral double vision that summer so I tried a bunch of natural stuff and finally went in for official diagnosis in August 2012. It isn't at all apparent to others yet and hopefully it will stay that way!
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Mon Dec 30, 2013 12:17 pm

Measurable results...

Just prior to my rituxan course, I played on a piece of gym equipment at the store. I easily managed twenty arm bent-suspended leg lifts. I know that's lame but I'm not a gym junky. Today, at home on same piece of equipment, I could only do four!! Rituxan has turned me into a wimp. :(

I am sure this particular issue is related to nutrient deficiencies and general laziness in the past three months...not ms progression. But it still blows! I guess the moral of the story is to watch your nutrient levels before and after a course of rituxan. I think low iron=dead numb and fatigued and low b (b5, I think, but I take b complex as some of the b's bother me on their own) is burning hands and feet. Definitely test iron and ferritin before aggressively supplementing iron and during supplementation...mine both made it into the low normal range within 3 weeks taking 25mg 2x/day.

Still working on the vitamin d/calcitriol issue. My vitamin d plummeted and my calcitriol is still high. Pth is low. Now supplementing calcium to try to shut down calcitriol overload. Calcium used to hurt. It doesn't anymore (vitamin d now hurts like calcium did). I can't make sense of it.

Finally, all my lymphocytes, monocytes, IGs, eos, baso, etc are in normal range.

At this point, I feel worse than I did before rituxan. My energy and sensory issues fluctuate depending what new nutrient imbalance I create trying to correct the ones blood tests have revealed. :crazy:

And here I thought I'd at least get a six month break from feeling crappy...lol
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Re: Rituximab iv and intrathecal with valtrex

Postby LR1234 » Tue Jan 07, 2014 3:41 pm

Thanks for update xx hoping this is a blip
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Thu Jan 23, 2014 5:52 pm

Finally! I am back to normal (for me). After feeling wonky for so long, it's really hard to say if I feel any improvement beyond the vision changes. Relative to how I have felt for most of the past 3+ months, I feel too good to be an unbiased judge at the moment. Getting my iron back into range corrected the calcitriol problem (I assume as I can now take 5000iu d3/day with no problems). I had to take 800mg magnesium/day for a week or so after I stopped iron to get what I think was a minor magnesium deficiency under control. I will test levels in a few weeks, I think.

About that post rituxan iron/ferritin deficiency and the current iron supplement induced head weirdness...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3521599/
I wonder...
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Re: Rituximab iv and intrathecal with valtrex

Postby Anonymoose » Sun Mar 02, 2014 7:29 pm

I suppose I should update this.

No big news to tell.
-high calcitriol wasn't at all related to low ferritin. My calcitriol is back in normal range but higher than ms norm...even when my ferritin is lower than ever.
-I'm still having issues with iron and ferritin.
-I became copper deficient. This can happen with iron supplementation at high doses over long periods of time but I supplemented at a low level for a relatively short period of time prior to what I assume to have been the onset of copper deficiency. (When iron supplement started giving me "funny head.") My copper level was good at around 107 in December and I was consuming plenty of coppery foods.
-energy and sensory issues still fluctuating based on iron and copper status.

If you google copper, myelin, cuprizone, and the like, you might find things that make you go hmm.
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