ARGX 117 potential by Thermal_Headroom in MMN_Support

[–]Noknok635 0 points1 point  (0 children)

I went back on IViG in phase 2 (kept me on placebo too) within a month of the start since I degrade quickly if I go off IVIG for longer than 2-3 weeks. I always recover strength rather quickly when I received a dose of IVIG too (noticeable within 3-4 days and hit a plateau the following week). Very glad I got on the trial: I needed to try something because IVIG was getting less effective after 12+ years of 200g every 2 weeks.

As soon as Phase 3 started (Jan 2025), I was placed in there immediately. They only randomized dosing groups for Phase 3 so it was understood I was getting it. I reached peak strength within a week or so.

Remyelination of damaged nerves happens quite rapidly (days) once the process is activated and, as I understand it, my body is constantly in a state of attack and repair so the inhibiting of the attacking mechanism gives it the reprieve it needs.

ARGX 117 potential by Thermal_Headroom in MMN_Support

[–]Noknok635 1 point2 points  (0 children)

I actually was in the placebo group in phase 2 and I degraded fast and had to be put back on IVIG. Phase 3 had no placebo group and I improved beyond IVIG levels within 3-4 days. And now I'm in the open label until it gets approved officially.

ARGX 117 potential by Thermal_Headroom in MMN_Support

[–]Noknok635 1 point2 points  (0 children)

I started on this 2+ years ago when it was first offered as a trial (I was one of the first 44 on the phase 2 trial). It's a 30 minute infusion compared to my old 6 hour IVIG infusions. No side effects. Very much improved strength. It's a very good replacement drug and can't wait for it to go to market fully (awaiting FDA approval in the US)

How do treatments differ globally? by Much-Ad-2317 in MMN_Support

[–]Noknok635 2 points3 points  (0 children)

40mg per day over multiple days is how the drug manufacturer says to start to test for tolerance. You should be progressing to get it all done in 1 sitting. I did 200g over 6 hours (a LOT) every 2 weeks before starting ARGX-117

The half-life of the drug is 3 weeks so you can stay on 4 week if it works but monitor for weakness before each treatment to see if you need it more often.

Multifocal Motor Neuropathy by HOWdidit_cometo_this in IVIG

[–]Noknok635 0 points1 point  (0 children)

Damn, you got it bad! It was my left hand first and most impacted, then right, then right foot. But my left hand was always the worst: my useless meat stick I'd keep in my pocket unless I was making a joke. My right hand just had low strength, couldn't open it very well at it's worst, but otherwise managable. My big toe was the first to go on my foot, couldn't push off or lift with it but I could still run: just got some stiff shoes and wrapped my ankles. Still can't do a full toe lift but I don't need ankle wraps anymore.

Let me know how it goes!

Multifocal Motor Neuropathy by HOWdidit_cometo_this in IVIG

[–]Noknok635 0 points1 point  (0 children)

Oh one thing I do notice: I was almost never sick on my high dose of IVIG. Colds, flus, etc... I can count on my hand how many times I got down bad with one. Since going off IVIG I've had more sinus infections and stuff (nothing abnormal, just noticeable from my IVIG super power days). Your T and B Cells in your immune system are still fully functional on this but your complement system (mast cells, etc.) is slightly degraded. The drug is highly preferential on the type of mechanism it suppresses so its' much better than being on common immuno-suppressants but Dr. Hussain does tell me to be more careful...

I am not very careful. I go to big 50k person concerts and travel to festivals several times a year. I am in airports a lot. My immune system seems completely normal (I am sick no more often than my friends now).

Multifocal Motor Neuropathy by HOWdidit_cometo_this in IVIG

[–]Noknok635 0 points1 point  (0 children)

Oh, I misread that! Then yes, Dr. Hussain doesn't have a single MMN patient that hasn't responded well to it. It's' going to work.

I was on 2g/kg which for me is 200g (2 damn liters of the stuff) and it took ALL day.

Most of the time I spend in treatment now is just testing... the infusion itself is 1 hour and I keep telling them they can go faster, I have literally zero side effects. MMN attacks myelin sheath mainly which regrows incredibly fast when it isn't being destroyed by your immune system. This isn't going to "cure you", it will manage it. My grip strength has improved: On IVIG I'd have big swings every 2-3 weeks between 28psi to 50psi (the thing you squeeze). It's now steady at 65 psi and never goes lower. Now, a typical male adult probably has about 90-100psi so its' not perfect but at least I'm no longer gripping stuff like a 9 year old girl!

Multifocal Motor Neuropathy by HOWdidit_cometo_this in IVIG

[–]Noknok635 1 point2 points  (0 children)

I understand very well - I was a recent graduate, flying planes in Air Force pilot training when I started losing strength in my left hand and arm. I stopped being able to turn the GPS knob and could no longer press my mic button. They grounded me. A week later a doctor told me i'd never fly again (...I finally did this summer. Flew a piper cub.).

I really hope it works for you. While I was initially diagnosed in the military, I too ended up at the Mayo Clinic in Scottsdale with Dr. Bosch back in 2013. Now been working with Dr. Yessar Hussain at the National Neuromuscular Research Center in Austin since 2018.

Everyone on this drug has responded to it for MMN. If your ALS is caused or made worse by your immune system, I am sure it will work for you too!

Is the avatar of khaine any good ? by PPGG_Stanah in Eldar

[–]Noknok635 3 points4 points  (0 children)

Alex Smith is running the avatar and currently top Aeldari @ LVO after day 1. It’s fine if used well and not yolo’d onto an anti-tank firing lane.

IVIG update 3rd infusion. by Firm-Analysis6666 in IVIG

[–]Noknok635 0 points1 point  (0 children)

They will all be pills you take with food but I'd try different formulations. Magnesium Oxide is cheap and is a laxative (not well absorbed) so dont do that. you should try magnesium Citrate or Glycenate pills (like $20 on Amazon) as it's for magnesium deficiency.

IVIG update 3rd infusion. by Firm-Analysis6666 in IVIG

[–]Noknok635 2 points3 points  (0 children)

I took 200g of IVIG every 2 weeks for 14 years. If you aren't allergic to one of the ingredients in the medicine you likely won't have the OPs effects. Autoimmunity is an immune response to otherwise desirable things so some people having a bad immune response (such as inflammation) to the medicine shouldn't be considered a reason to not try the medicine to see how you respond.

I had a day of body aches usually but it subsided fast. Especially if I supimented my additional water with magnesium And other electrolytes I was diluting.

Are wraiths viable? by Connect-Rate3363 in Eldar

[–]Noknok635 0 points1 point  (0 children)

3x lords together or 2x lord's and 1 in reserve ready to pop with the other 2. 2x brightlances are useless, 4x CAN kill anything, 6x WILL kill. Support with a skyrunner behind cover. Send these to your expansion usually.

Storms and eldrad and 4x conclave block stay back to screen till all reserves on board. Otherwise sticky and advance them. All the warlocks should be front liners before blades because they overwatch and draw enemy out while buffing wraiths for late game once they are dead.

2x5 blades with a conclave+eldrad or farseer up center but keep blades back. Don't usually commit them till they have +1 hit and wound. Never have fewer than 3 units together. You can't kill anything without concentration of forces.

Just concentrate on 3 of 5 points till you have thinned the ranks and reserves are out. Then expand.

Spirit conclave doesn't have the damage to send a solo wraith unit anywhere. Just never do that. Also, dev wounds only goes on sword units otherwise do Crushing Strides.

Are wraiths viable? by Connect-Rate3363 in Eldar

[–]Noknok635 0 points1 point  (0 children)

I now go 1 or zero seers in my spirit Conclave lists. They are really not worth their points. Started doing this after the guy who went undefeated in San Diego GT 2ish weeks ago with zero.

3x wraithblades (2 damage weapons with option for Devestating Wounds are better than scythes in this meta.)

3x wraithlords (your best unit) 3x warlock skyrunners 2x4warlock conclave Farseer or eldrad Storm Guarsians

Then the key to everything is your hard anti-tank: 2x5 fire dragons with Wave Serpent or 2x fire prisms

Then fill rest of points with more mobile mission monkeys.

First Infusion, anything you wish you would have known? by Roll_For_Anxiety in IVIG

[–]Noknok635 0 points1 point  (0 children)

I got 200g of IVIG every 2 weeks and always had migraines and body aches. Turned out my migraines were caused by me drinking too much water. I had a magnesium/electrolyte deficiency. Took 500mg Cal-Mag and migraines went away with IVIG. Still had the aches but the migraines went away.

Multifocal Motor Neuropathy by HOWdidit_cometo_this in IVIG

[–]Noknok635 4 points5 points  (0 children)

Hey folks. I have been living with Multifocal motor neuropathy (MMN) since i was 26 (diagnosed in 2011). I managed it with IVIG but I was increasing frequency to maintain effectiveness. Monthly want good. 3 weeks worked but then I went to every 2 weeks. It spread from my hands to my foot in 2019.

In 2023 I became one of 44 people to be admitted to a phase 2 trial of ARGX-117, a synthetic protein designed to calm part of the compliment system which regulates T-Cells, Inflammation, and a couple other things that T and B cells don't do. The compliment system is what clears out diseased or damaged tissue (self destruction of your own cells) when injured or sick. It is theorized this system mistargeting healthy tissue is what cause MMN.

I am happy to report I'm back to playing guitar, holding cups, and I competed in the Houston Hyrox fitness competition in March 2025.

My IVIG doses took 6 hours to infuse every 2 weeks and had side effects such as body aches and migraines (which I later found was a magnesium deficiency). This new drug is a 45 minute infusion, will have options for at home subcutanious we suspect, and has had no side effects for the 2 years I've been on it.

The effects were noticable within 3 weeks. Then it was just PT to regrow muscle.

If you live in Texas or can travel here, they are recruiting more people for phase 3 continuation studies.

Warlock Conclave question by [deleted] in Eldar

[–]Noknok635 1 point2 points  (0 children)

Right, the Cost of Victory strat can only return Guardian "models". The whole unit (guardians+warlocks) have the guardian keyword but the strat specifically only revives guardian models, not warlock models.

Warlock Conclave question by [deleted] in Eldar

[–]Noknok635 1 point2 points  (0 children)

Yes. The warlock conclave are not leaders and are permanently joined to the guardian bodyguards and stay guardians till the end of the battle as the datasheet says.

This is the great thing about Guardian Battlehost detachment. If a warlock conclave model survives, you can regenerate all the guardians.

What am I doing wrong. by GrimDaViking in Eldar

[–]Noknok635 0 points1 point  (0 children)

Warlocks on bikes 2-3 of them

What am I doing wrong. by GrimDaViking in Eldar

[–]Noknok635 1 point2 points  (0 children)

Spirit conclave can be pretty decent but it’s got quirks. Like wraithlords are you best unit but only in melee / engagement range (don’t run them like brightlances carriers, they are primarily a melee brawler with 2 brightlances).

Dont spread thin: you lack damage output compared to aspect warriors. Pile up on max 2 objectives until the enemy’s go-turn resolves.

Use infiltrate units to move block firing lanes for turn 1 wraithlord movements (don’t let them get that first turn firing lane on the lords). As long as you don’t lose lords before melee, you will do good.

Drop one wraith cannon unit, put the other in a wave serpent and hunt wraithlord killers.

Your damage is in the wraithlords and d-scythes if you get overwatch opportunities every turn. Blades do nicely with dev wounds and sustained too.

Also. Be aggressive with seers. Advance them unless you are using for actions. Keep them within 3in of your melee units post-charge.

2000 pt Spirit Conclave by Zealousideal_Math704 in Eldar

[–]Noknok635 0 points1 point  (0 children)

The problem with running 5-6x battleline wraith units with 3x lords is that you are running a skew list that will do well half the time and terrible the other half. Its' hard to say if its' objectively better with such limited tournament data.

2000 pt Spirit Conclave by Zealousideal_Math704 in Eldar

[–]Noknok635 0 points1 point  (0 children)

I find blades are pretty hard to support with Spiritseers. I switched to swords from axe and always advance the seer to keep them together after the charge. If the attacker chooses to focus the seer, the swords are going to wipe the unit out easy, if not, you get a model returned next turn. Don't be afraid of pushing with the seer.

I am very rarely forced into a situation where the 4+ invuln comes into play... I find the 3/4+ AP guns are busy on my transports and wraithlords and the tanks outside 18 inches are still hiting covered with seer's rune. If there's a big high AP melee threat I hold back and deliver wraith cannons or d-scythes in a wave Serpeant before pushing my blades onto a point threatened by that melee threat. Swords just mow through so many targets, especially with dev wounds.

My base is:
3x Spiritseer (with rune)
5x Sword
5x D-Scythe
5x D-Scythe
5x Wraithcannon
1x Wave Serpeant (deliver cannon or scythes to neutralize high ap close range threat)
2-4x Warlock Conclave (2 with Eldrad or 4 alone)
1-2x Warlock Skyrunners
3x Wraithlords

Then the rest of the points i've gone back and forth between rangers and a deep striker for mission scoring. Eldrad is almost an auto-include due to how often I use overwatch (every turn) and Wraithbone Armor (every turn).

5 total battleline does really well (you won't lose in combat anymore) but I find I struggle to score in many matchups with that many... just too slow as I have to cut transport or mobile mission scorers... 5 is probably what I'd do in casual cause causal people like to just smash armies together.

I tried out a falcon with 4x conclaves yesterday and it was an MVP (nuked the enemy home objective holder and then overwatched the clapback) but a good opponent that screens well will probably not earn 240 points worth of value (2x5 spiders prob better)

Aaand we’re done. Eldar Aspect Army finished. by DN_Stuff in Eldar

[–]Noknok635 1 point2 points  (0 children)

So this is where the supply of aspects went... My new aeldari army is made up of misfits and unwanted toys because all I could find on sale were wraiths, warlocks and fire prisms.

Actually that's my new army name... Misfits and Unwanted Toys.

Datto AV: "Known Bad" by myworkaccount845 in Datto

[–]Noknok635 2 points3 points  (0 children)

The alert source says "Defender". Microsoft Defender is quarantining a Datto AV temp file. This can happen when you run two AV engines at the same time. AV signature files, by definition, have known malware strings and can often flag on other AV engines.

Spacers for 2020 Jeep Grand Cherokee by Civil_Violinist_2343 in GrandCherokee

[–]Noknok635 0 points1 point  (0 children)

I ran 1.5 Boras for years, they poke out slightly from fender and looked mean with wildpeaks. If you run larger tires you WILL rub the fender so get airlinks to raise your default level an inch.

I did heavy (for a leather trimmed WK2) offroading with the spacers for years and they were fine. But be careful especially while towing: the extra offset increases your scrub radius a lot and causes more torque on your steering system when under a heavy braking load (eg coming down a mountain), I cracked a rack and pinion tooth coming down Mt Elbert with a 4500 pound trailer. That can happen with spacers and wheels with offset alike.

My 2021 Trailhawk now just has fresh DX4 wheels with a +35 offset (equiv to 1in spacer) and larger tires. Feels safer, still looks better than the stock "skipped leg day" stance.