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Re: Rituximab iv and intrathecal with valtrex

Posted: Wed Mar 19, 2014 9:38 am
by LR1234
Hi anon
Just checking in with you...
I had 1000mg rituxan a couple of days ago, nothing to report yet.
How you feeling?

Re: Rituximab iv and intrathecal with valtrex

Posted: Wed Mar 19, 2014 10:37 am
by Anonymoose
LR1234 wrote:Hi anon
Just checking in with you...
I had 1000mg rituxan a couple of days ago, nothing to report yet.
How you feeling?
Hi LR,

Glad you finally got around to your infusion. I hope there is good news on other fronts. :)

I'm doing pretty well. Energy and strength are pretty normal. Sleeping well and dreaming again...so weird. I guess I have a lot of dreams to catch up on as they reach way back into college days. I've got a bit of new and different numbness in my left hand that started in the past month or so...copper related?? Who knows?! It doesn't feel like anything ms I've had before. I get mild headaches now and then after supplementing iron. My nail moons are growing back. Everything else is feeling good. Pills have started getting stuck in my throat again though...my rituxan "break" is probably over. What a break it's been. :roll: Will be celebrating my recovery with a trip back home for some decent Mexican and Thai food and days at the beach. :D

I hope the rituxan does the trick for you! Keep us posted.

Re: Rituximab iv and intrathecal with valtrex

Posted: Wed Mar 19, 2014 10:57 am
by CaliReader
Hi Anon, Hi LR,

I'm still following this thread with interest. If Gilenya is working for me, then I shudder to think what I would have experienced without it. Recovering from fourth episode in two years. If either of you know of California neuro's wiling to do this and could message me via this board, I'd like to have that information. I would want to research a lot more, but would like to know who does this.

Re: Rituximab iv and intrathecal with valtrex

Posted: Wed Mar 19, 2014 12:03 pm
by Anonymoose
CaliReader wrote:Hi Anon, Hi LR,

I'm still following this thread with interest. If Gilenya is working for me, then I shudder to think what I would have experienced without it. Recovering from fourth episode in two years. If either of you know of California neuro's wiling to do this and could message me via this board, I'd like to have that information. I would want to research a lot more, but would like to know who does this.
Hi Cali,
I'm sorry to hear the gilenya isn't stopping your relapses. Are you looking for a neuro who will do the intrathecal or just the intravenous rituxan? My impression is that lots of neuro's are open to the iv infusions. It should be pretty easy to find one in your area.

I'm not in your area (but not too far either) and my neuro hasn't given me his blessing to share his identity yet. I didn't have very troubling ms prior to my treatment (unless it was in reaction to my other experiments) so I probably wouldn't have relapsed anyway. I have no idea if the it/iv combo is worth it and I think I will put off my csf follow up testing until October when my B cells are back to normal and I get a new MRI (no contrast!). So, if there will be any evidence of good things (or bad things), it will still be a while before I can share.

I hope things settle down for you. Sometimes when I post here about a new symptom or improvement, the darn thing suddenly disappears. Maybe tims has magical powers. Try posting symptoms and see if they disappear. Seems about as reliable as a dmd. :P

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Mar 20, 2014 10:24 am
by LR1234
Hey all,
Well 2 days later and I'm super tired!!! I was tired before the rituxan and felt a relapse brewing beforehand and post rituxan I'm so so tired, can't move myself off the couch (except to get myself food!)
I hope this strong fatigue calms down soon.
I also feel mildly fluey, just a hint of a sore throat and overwhelming fatigue. Will keep you posted as I hope you guys do too xx

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Mar 20, 2014 12:54 pm
by Anonymoose
LR1234 wrote:Hey all,
Well 2 days later and I'm super tired!!! I was tired before the rituxan and felt a relapse brewing beforehand and post rituxan I'm so so tired, can't move myself off the couch (except to get myself food!)
I hope this strong fatigue calms down soon.
I also feel mildly fluey, just a hint of a sore throat and overwhelming fatigue. Will keep you posted as I hope you guys do too xx
That sounds kind of normal...though I don't recall reading of such extreme fatigue. Maybe you got a mega-dose in your brain because you were starting a relapse. At least you made it to the couch. :) When is your next infusion?

That new left hand numbness I reported yesterday...almost gone. Either the magical power of tims or the extra dose of zinc must have cleared it up. :crazy:

Hope you're back on your feet soon!

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Mar 20, 2014 6:23 pm
by CaliReader
Thanks Anon. If the neuro is willing to go public, please think of me. I'll post if I try something else in the mean time.

Probably I'll post anyway. Just can't look away. ; )

Re: Rituximab iv and intrathecal with valtrex

Posted: Fri Mar 21, 2014 7:28 am
by Anonymoose
Of course I'll keep you in mind, Cali. :) I'll share as soon as I can...if I can.

Re: Rituximab iv and intrathecal with valtrex

Posted: Sun Mar 23, 2014 5:42 am
by LR1234
Hey all,
Just to keep you posted.
I had an awful headache for about a day, night and following day. It's gone now but have this really strong bruised feeling in my head.
Still feel sooo tired!

Anon glad to hear your numbness has cleared x

Re: Rituximab iv and intrathecal with valtrex

Posted: Sun Mar 23, 2014 6:40 am
by Anonymoose
Hi LR,
That headache sounds horrible! Sorry you had to go through it. :(

I was a total zombie for the first month but thought it was because I did the intrathecal. I guess not! Maybe we are just ultra-sensitive. <shrug>

The numbness isn't gone yet. The next day I played more with zinc and it got worse again. Then I skipped everything but iron and b complex and it improved again. Madness. I had blood drawn Friday so hoping there will be some more clues there. You might want to check iron and ferritin if your fatigue sticks around long. Eventually, that turned out to be the cause of my lasting fatigue (some had to be related to the rituxan in the beginning so I wouldn't worry quite yet).

I was too zombified to read or even watch tv...I hope you can at least do those. It felt like such a waste of time!

Feel better. :)

Re: Rituximab iv and intrathecal with valtrex

Posted: Fri Mar 28, 2014 7:01 pm
by Anonymoose
LR, how you do'in?

I've got my supplements all sorted and am feeling pretty darn good. Things get more normal everyday so if anything is going to get better than baseline, it should start soon. I've added another 500mg valtrex/day to the mix. It's only been a couple of days but it hasn't caused problems yet. Ho hum.

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Apr 17, 2014 3:31 pm
by Anonymoose
More nothing to update update.

I messed myself up either by doubling valtrex or taking vitamin c or both. I am working back to baseline....again. It's weird though because even though my hands feel a bit stranger than normal, my temperature sensitivity is definitely improving from baseline.

Had my neuro appt. His reaction to my messed up copper and iron (and maybe calcitriol) was "I think we did something." Maybe. In wait and see mode until October when will do MRI and lumbar puncture if MRI looks good. He's not ready to go public yet. (Sorry Cali. Did you ask yammer about his neuro in ca?)

LR, are you okay??

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Apr 17, 2014 6:22 pm
by CaliReader
Thanks Anon. I haven't asked Yammer yet. I'm still working on my in plan neurologist, but if it comes to that I may travel.

I haven't decided yet whether Rituxan or Alemtuzumab is the way to go, but at this point I'm hoping to take one of them. Can you explain why you chose Rituxun? I can't evaluate. They both have real risks and real benefits, but the risk of either to me is better than dying the way Annette Funicello died, even if it did happen in extreme old age.

Re: Rituximab iv and intrathecal with valtrex

Posted: Thu Apr 17, 2014 7:57 pm
by Anonymoose
CaliReader wrote:Thanks Anon. I haven't asked Yammer yet. I'm still working on my in plan neurologist, but if it comes to that I may travel.

I haven't decided yet whether Rituxan or Alemtuzumab is the way to go, but at this point I'm hoping to take one of them. Can you explain why you chose Rituxun? I can't evaluate. They both have real risks and real benefits, but the risk of either to me is better than dying the way Annette Funicello died, even if it did happen in extreme old age.
I had a very specific goal in mind which was to hit ebv infected cells hard. While cells other than B cells can be infected and immortalized (I think...might be in one of Pender's papers) the B cells seem to be the big problem to me. Alemtuzumab targets T cells so I didn't even really ever consider it. Rituxan also has a good track record for safety/efficacy in treating ebv related post transplant lymphoproliferative disease. Also, if you read every ms rituxan experience you can find online, iv works for most rrms with open bbb for a time and then stops working. I suspect this is because the rituxan closes the bbb and can no longer reach the CNS adequately. The CNS has it's own little immune system so you just can't leave it alone. Why else would it stop working??? That's why I went with intrathecal too.

A couple of other options to consider, if you are going the ebv route, are adoptive immunotherapy (I will probably seek this out if the rituxan worked because I think the ebv will come back...asked my neuro about it...he can't get it for me so it should be quite a struggle) and the herv drugs.

I am so with you on the Annette Funicello thing. Frankly, I will take any measure necessary to avoid coming even close to that condition.

I hope you can work with your in network doctor to get whatever you choose. I feel bad for the neuros. Can't imagine watching patients deteriorate the way they have to. :(

Edit: I had forgotten about this...you can develop resistance to rituxan which could be another reason, probably a more plausible reason, that rituxan only works for a couple of years in msers. Had read it elsewhere but this should work... http://www.iwmf.com/docs/Antigenic_Modu ... tology.pdf

Re: Rituximab iv and intrathecal with valtrex

Posted: Fri Apr 18, 2014 2:28 pm
by Anonymoose
Not sure when this symptom started because it never really bothered me but in December, when I thought everything was back to normal/baseline and was feeling really good again the first time, I had a hot stone massage. I couldn't feel the heat from the stones on my lower legs. Had a regular massage today and easily felt the full warmth of just hands. I guess whatever is happening is focusing on temperature sensitivity for now. The symptom may have started after rituxan so it's going away might be no biggie. Felt good anyway. :)