Has anyone else tried clemastine fumarate @ new relapse?

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Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Wed Nov 15, 2017 12:44 pm

I’m pretty sure I started my first noticeable relapse since rituxan (2013) on Monday. It started as a new numb feeling on top of right foot and started traveling up my leg throughout the day and I could feel the ms hug starting. I never have one-sided issues and the non-relapse sensory issues come and go within hours. This lasted a full day and is still there. BUT I took a single dose of clemastine fumarate Monday evening and rested for about 30 minutes. A heat sensation started radiating out from the lumbar puncture zone on my spine. I had to get busy helping my son with a project so had no time to pay attention to symptoms until I went to bed. All relapse symptoms went away except that numb spot on top of foot which is still there but mild.

So, I wonder...could CF stop relapses??? I’m still taking twice a day just in case.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Scott1 » Wed Nov 15, 2017 1:40 pm

Hi,

Long time since we spoke.

Apart from what you described is anything going on, such as fatigue? What did the hug feel like and where did you feel it?

What other medications or supplements are you using now?

The clemastine fumarate is supposed to target demyelination issues. The assumption is demyelination is a cause not a symptom. You might have to dig a little deeper.

Regards,
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Wed Nov 15, 2017 3:36 pm

Heya! Watched your Pilates video the other day. You’re doing great!

Fatigue has been a huge issue for me over the past year or so. For several months, I’ve been taking thiamine in moderately high doses and it’s helped with my energy a bit and fixes my burning feet and hands (wish I’d figured that one out years ago and no, I’m not a heavy drinker...don’t drink at all). Started taking allithiamine last week for allegedly better cns penetration, not high dose yet and I stopped w/relapse (?). Noticed my mind was clearer with allithiamine but nothing else changed. Also started cautiously working on vit d last week (~1000iu/day). I stopped vit d w/relapse (?) too. My Monday symptoms aren’t anything like my old reaction to vit d. Taking a multi, b75, and 400-600 mg/day mag too. The relapse (?) hasn’t really affected my energy. It’s not great but also not worse. I’m still pushing myself to do a million things every day (catch up from down time) like I always do whenever I have any energy.

The hug felt like light hug tension in back but didn’t make it around to the front and grow strong before the heat sensation emanating from my spine came and everything backed off. I didn’t do anything different or strenuous so it’s not likely strain or nerve compression.

I’m not expecting any groundbreaking scientific discovery. It was just really weird and I wonder if anyone else has tried CF during a relapse and if so, did anything out of the ordinary happen?

Never a dull moment with this ms, eh?

Edited for autoscrewup
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Scott1 » Thu Nov 16, 2017 4:57 am

Hi,

I guess the fatigue is the clue. If that's been an issue for a year or two then things have slowly been building up.

The rituxumab was really about depleting the B cells so EBV had nowhere to live. It is a very difficult virus to eliminate. Do you/Have you tried Valacyclovir again?

I haven't really done much with the B vitamins. I guess you're trying to activate the nitrite/nitrate pathway to assist vasodilation. I tend to use l-arginine for that.

I found a great deal of benefit following the ideas of Stephen Sinatra to promote ATP production . https://www.goodreads.com/book/show/277 ... a-solution
I take 750mg CoQ10, 2x2000mg aceytl-l-carnitine, mag diglycinate and if I was in the US I'd add d-ribose. The book is a good read

Also,no added sugar, no gluten.

Of course, I'm very keen on pilates as well.

It might worthwhile, if you had a hug doing a short course of cortisone to break the cycle.

Regards,
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Thu Nov 16, 2017 8:41 am

Thanks for the suggestions. I haven’t tried valtrex again. I really need to get my vit d up so it’s not an option for me now. As for amino acids, I won’t take arginine because it’s ebv food. BUT, I’ve more than doubled my meat intake (recovering vegan) in an completely reasonless attempt to increase my ferritin level (and ceruloplasmin) as it wasn’t responding to iron supplement despite the fact that my iron levels were rising a lot. Ferritin isn’t deficient...just borderline. I eat loads of turkey breast which is high in arginine. I don’t do steroids unless my neurologist absolutely requires it as adjunct to rituxan. Based on my experience, this relapse has been shut down. Usually they get me from soles of my feet to my shoulders and are absolutely miserable. This one shrank back to the top of my foot and I’m pleased as punch. I’m considering doing cladribine in a year or two...can’t risk a rituxan-like reaction at this point. Pilates? I’m a worker, not a worker-outer. Lol. I can’t stand exercising for the sake of exercise. I do think Pilates might come into the equation if spacticity becomes an issue. Oh, and among other things, thiamine is essential to Krebs cycle/atp production.

I’ll keep all of your ideas in mind, as usual. I’ve got so much tims stuff crammed in my head!

Be well.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jerrygallow » Thu Nov 16, 2017 11:03 am

How is rituxan? My doc prescribed it but I haven’t started yet. The list of side effects is scary. As for clemestine the subjects took the equivalent of four per day. I did less than that and fell asleep at work. It also slows your digestion significantly. I take smaller doses but no observable changes
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Thu Nov 16, 2017 11:54 am

Hi Jerry,

Thanks for the feedback!

My rituxan protocol wasn’t typical. It’s documented in Rituxan sub forum. Over a month I had 4 iv infusions along with 4 intrathecal injections. It knocked me on my butt hard for 4 months. I think my nutrient levels were suboptimal prior to rituxan and the increased need for nutrient support during treatment sent me crashing. My iron/ferritin and copper/ceruloplasmin levels went low...who knows what else was off?! After initial crash (which I pulled out of by taking lots of iron and copper...with bloodwork to monitor levels), I had 2 years of wonderful normalcy. Then my energy started slowly declining (loads of stress and overworking myself) and here I am. All in all, I think rituxan is great for ms. If I test low for neutralizing antibodies, I might do it again but I’ll max out nutrient levels first if I can. I’ve refused follow up mris...never had a baseline spinal so wouldn’t be worth comparison anyway.

I saw the CF dosing was higher than what I take. I can’t function on more as I get sleepy too. I wonder if relapsing/open bbb allows for a lower dose to be effective or reach more deeply. Amazon is carrying CF now so I’ve ordered a stash refresh. :P I have allergies anyway so it’s a sound investment no matter.

Be well.
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Scott1 » Thu Nov 16, 2017 12:18 pm

Hi,

You're right about L-arginine. I forgot about it as I always take valacyclovir and that would give me a shield.

I'm still of the view that Vit D works in a complex with the RXR and that is important - https://en.wikipedia.org/wiki/VDRE or https://targetexplorer.ingenuity.com/pa ... pe=default

You can influence RXR through retinoids and the safest way is to take carrot juice . A bit like the relationship between the lights, the switch on the wall and mains fuse. For the lights to work each step has to be operational. About a year or so of use gets the relationship working.

Try Sinatras book for an explanation. He is focused on the heart but read it as an explanation of how cells work to make energy. My fatigue level is non existent these days.

Regards,
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Sat Dec 16, 2017 11:12 am

recovering vegan high five :lol: <3
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Tue Jan 02, 2018 9:29 am

happy new year anon :D

can i check in on the fine print details of your current supplement regimen, and any recent blood test results?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Wed Jan 03, 2018 12:27 pm

jimmylegs wrote:happy new year anon :D

can i check in on the fine print details of your current supplement regimen, and any recent blood test results?


Heya jimmy,

Happy New Year!

Sure. Current supplements as follows:

6 am
raw one multi for women
50 mg allithiamine w/“helpers” included in capsule

10am
200 mg mag glyc
B complex

9 pm 200 mg mag glyc

2000 iu d3 w/late mag once or twice a week...trying to figure out if it drags me down in more frequent doses.

1 capsule (1/2 dose) ultimate iron once or twice a week.

2000 iu b12 lozenge biweekly

100 mg additional thiamine (not alli) if I experience any burning sensations.

Epsom salt baths 2x/week.

That’s it. My years of burning hands and feet seem to have been due to a thiamine deficiency so I’m focused on that right now...seeing what I need to add as a result of replenishing thiamine. So far, I seem to need much more potassium (Charlie horses, night sweats...both already gone) so I’m drinking more OJ and coconut water, both of which are easier to fit in than bananas and potato skins. :P

My labs are from late last spring, I think. Useless at this point. I’ll probably test again this spring.

FYI, I bought a big ol’ bag of dark chocolate pumpkin seed treats at Costco today and it was all your fault, pumpkin seed pusher!!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Wed Jan 03, 2018 12:45 pm

that's really great that you were able to trace the burning neuropathy to thiamine. B1 definitely looms large in the klenner protocol for ms. more of that one than any other B vit, if memory serves.

does this match the label for the multi?
http://www.livingfoodslifestyle.co.nz/i ... 20Pane.png

looks like there could be a couple of regimen gaps to investigate, but pretty decent to start.

dark choc pumpkin seed treats you say.. maybe i should investigate this costco phenom of which you speak ;)

what's on the list for labs this spring?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby Anonymoose » Wed Jan 03, 2018 3:07 pm

Yep, that looks like the multi label. I looked at the klenner protocol for the first time months after starting my thiamine kick. Doesn’t it include liver extracts/juice/enzymes whatever? There’s some liver substance in ultimate iron. Interesting coincidence but not interesting enough to make me go all Klenner.

Forgot to mention I quit my horrible coke (diet) habit last spring too. I wonder if that will have any impact on labs too. I’ll probably test iron, ferritin, d, and do a comprehensive metabolic panel. Not very interesting, huh?
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby jimmylegs » Wed Jan 03, 2018 3:23 pm

yeah you pick and choose with klenner. i should have paid more attention to the minerals but it was too much info at the time. defs skipped the liver extract and did nothing whatsoever via injection. i remember mostly the protein element which meant a switch from vegan meals to eggs for brekkies, sprinkling lecithin granules on my food, and pounding vit E and B vits like a madwoman. and oh, dat niacin flush - whew! no mention at all of vit d3 in the protocol. too old.

wow that's great to hear you canned the coke! re tests, can u also ask for serum zinc and serum copper perchance perhaps? also serum mag to go with your serum 25(OH)d3?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Has anyone else tried clemastine fumarate @ new relapse?

Postby THX1138 » Wed Jan 03, 2018 8:23 pm

Forgot to mention I quit my horrible coke (diet) habit last spring too.
:-BD
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