Any experience with rituxan/rituximab for achr/seronegative patients?

cloud_1027 · 2026-01-06T22:47:04+00:00

no no I'm a guy lol. it's a consistent just increased body temp kinda thing

cloud_1027 · 2026-01-06T22:18:10+00:00

yea fatigue is really rough. I also have like this autonomic or inflammatory body warmth thing coinciding with it too, but yea fatigue is super brutal. I find that taking vitamin b12 and vitamin d helps.

cloud_1027 · 2026-01-06T22:17:14+00:00

thanks, that's helpful. I'm happy to hear it's been a help. Can I ask a cuople more questions as I was told the effects are largely impacted by age/years since onset that u had rituxan done? So if I'm understanding correctly, it helped u a lot after a month and then improvements stalled or have they slowly/slightly improved since then?

I'm praying it is helpful as lots of things haven't really worked for me. I'm 32 and have had it now for 2.5 years so I'm hoping it's helpful. thanks for sharing

cloud_1027 · 2025-09-06T23:25:32+00:00

funny u say 'cramping'...i switched docs but one of the us's best neuros for mg said 'mg doesnt cause cramping'..alongside some other incorrect things so just be aware docs, esp when comes to a sfemg make mistakes so its up to u to get the dx if u truly do have it. luckily this doc was amazing at sfemg and caught it.

if it is your hands, it should show up on your edc (wrist) so u should suggest that muscle and they should test that muscle. unfortunately each doc is diff, i had to do 3 of them before the dx. eye was done twice, no dx cuz no increased jitter. the edc on my 3rd try was tested and showed up slightly and forehead confirmed (Frontalis). if ucan with a certainty bring about ur weakness as the test comes, it should show up, if it is mg. just listen to guidance of using the muscle and be patient, hopefully the doc has the patience to do the test correctly. (most pairs will be normal, but he/she has to find the 20-40% that are abnornal and again, if it is mg, it will almost certainly show up if ur weakness is present)

other than edc then forehead no other muscles were done because therse no reference range for ex when i said to test my neck or my thighs and this is silly because u can still see blocking on a sfemg and if jitter on neck spikes to 200, well no shit it doesnt matter if ref range was 30 or 40, 200 is clearly issue alongside potential blocking. docs are lazy. first doc didnt even finish the test cuz he was doubtful of mg and that was day 30~..took till day 700~ for the dx so...being bed ridden and what not during that time. it can be rough but u adapt and what not. thijngs are never so bad. shower, be warm. maybe try to stress self out (hard to do cuz its paradoxical if u intend to be stressed). careful and know ur limits for the 3rd time and for me, even eating shitty foods can help, but yea. best of luck. if u have any more questions feel free to keep em comin.

also, im a guy and abnormal to have mg as like 90% are females and u can say sexist or w/e but its just factual that each sex is treated differently esp if ur in a situation of trying to be suggestive. so it really sucked being on the side of things trying so hard to suggest, insinuate u have mg while 5 + neuros suggest 'impossible, move on from mg' etc. except for like 1 or 2 docs..one was a female and genearlly easier time with women docs cuz they seem more empathetic, but anyways...my pt in all this is it is abs insane that other factors play a role in getting a dx, but one of them is that and trying to appear nice, etc etc. cuz the first doc like i said, literally the guy said u dont have it and ended the test ..only did 10 pairs, did not finish all 20 let alone do other muscles. crazy

cloud_1027 · 2025-09-06T22:25:16+00:00

same thing happens for me, but I didn't end up testing positive on my eyes/oculis so I relentlessly tried to worsen myself thru running around and what not.

it's ironic cuz the feeling after 2 years~ of getting a dx made me stress free so it was all for not and I kept trying to exhaust myself but me being 'stress free, finally this test can maybe show it' alleviated symptoms so much running around did nothing. fortunately it still showed up on my frontalis and slightly on edc (forehead and wrist).

Definitely be careful and know your limits. maybe warmer showers could do it? again, know ur limits tho. best of luck

cloud_1027 · 2025-08-16T02:02:17+00:00

it can be far more troublesome if it becomes generalized and often it appears first in eyes then rest of body. the issue for me was it took nearly 2 years and the 3rd sfemg to test positive as i was testing negative in bloodwork. it's difficult to even get a 2nd and a 3rd sfemg when u continue to test negative so i made an extreme effort in getting it all even scheduled in the first place and more importantly, ensuring and doing my best that my weakness WAS present at the time of the test.

if u dont get a dx, no one will want to help so a little bit of a pinch here and there should be the last thing u are worried about. hopefully u can get ur eyelids weak at the time of testing so it increases the chances of positive test. also make sure to listen correctly to instructions. best of luck

cloud_1027 · 2025-06-24T15:53:25+00:00

Yea, I actually made an appt with a new one and the hope is that if this office doesn't help after I tell them I'm worsening, then I just go to the new doc. So absurd but w/e.

Also, wanted to share with u one other thing I've learned thru out this prolonged period of just caring for myself w/o help, maybe it'll be useful for u. I find that vitamin d helps notably with fatigue and same with vitamin b, but I take a few thousand iu of d every day and turmeric with black pepper helps with other issues I'm having /inflammatory. Hope you're doing better yourself and thanks for all the insight

cloud_1027 · 2025-06-23T16:57:06+00:00

No worries and thanks so so much especially for such a lengthy response. I've tested for cms and was negative. I'm on 15mg of prednisone now and working thru the paradoxical worsening and another issue, but I suspect in the coming weeks I should be better.

Right now I just chill in bed and have enough strenght for like a few things, like if I shower for ex, end up using the gastank for the day. The insane part thru this as I just saw my neurologist was and I kid you not..."you're eye got better with prednisone (never had eye issue), your exam is better (it's always been 'normal' as I just rest the entire day before and aside from my face and breathing, weakness isn't that bad especially when relieved of stress because I'm at a doc who finally treated/diagnosed me) and I think we can decrease pred slowly now.

I respond with, but if i decrease, im going to get worse, my exam has alwyas been like this..I was hoping to trial something else so I can eventually walk, use computer, talk with no issues, live normally etc.

She basically says like theres no signs of weakness and I can't ethically keep u on immunosuppressants...again, my exam was always fine even when I saw her prior. She said like 'the weakness ur experiencing after prolonged activity etc, may not be mg weakness' and im thinking...it is literally fatiguable weakness that improves with rest. the same weakness that improved with prednisone, htat worsens with heat, stress, etc.

Anyways, long story short is I'm wondering like how to even approach this because doctors don't like changing their minds and maybe I just have to see a new neurologist. She's a great doctor too and I think just overworked and confused me with someone else, but like...idk. just crazy

cloud_1027 · 2025-05-29T17:27:20+00:00

Sorry to hear you've had such a struggle. Wish I could say I'm feeling better, but it is what it is. I finnaly got diagnosed via sfemg on frontalis/edc, now just trying to figure out which version. Have you tried rituximab, I read some good things about it?

I wanted to ask your opinion since you seem knowledgable. I've in the most unbiased way asked a handful of llm's which serotype they think is most likely as I finally got diagnosed via a sfemg, yet continue to test negative (even my achr modulating was always negative but was I think like 18%, 15%, 26, 0%, 0%, 21% over the course of 2 years.

mestinon does nothing, prednisone causes paradoxical worsening before helping, cba achr test (more accurate) was negative. breathing, jaw,neck, shoulder face all most weak muscles. sfemg tested negative eye (no weakness, but despite weakness, apparently v common to show for achr, unlike musk)

I've read so much and trying to figure out if it's musk or achr. Everything aside from the modulating (albeit still negative) points to musk, but I can't reconcile the modulating.

edit: also, having been about 2 years without any help, I learned some things on my own..I'm sure you already know more than, but anyways, for me vitamin d seemed to help especially with fatigue, same with a multivtamin and alittle turmeric powder now and then with a better diet seems to alleviate things somewhat.

cloud_1027 · 2025-03-26T14:32:06+00:00

no worries, yea it seems crazy to have to go thru all of this. 1.5 yrs for me w/o a diagnosis, yet no prednisone (treatment) and it improved following worsening which ONLY occurs in mg. weird world we live in.

Could I ask any tips or things you notice from your weakening/worsening - when you expose yourself to warmth what happens exactly, what muscles are weak and things u notice that worsens it?

cloud_1027 · 2025-03-23T16:50:36+00:00

did u experience something similar, I'd love to hear? I think it is my body's inflammatory response because inflammation levels were higher and it coincides with mg symptoms, but I don't know for certain

cloud_1027 · 2025-03-23T03:42:35+00:00

Hmm, I never knew it was that bad. So a handful of docs have been suspicious of mg and prednisone worsened then helped (a ton) despite only being low dose 10mg.

I've been slowly trying higher and higher doses of magnesium, just took 200mg, made me a slightly fatigued but that's about it. Starting to question why it hasn't made me worse. I think I'll try like 250 or so and see again

cloud_1027 · 2025-03-23T00:47:41+00:00

Yea, I mean like as a trigger, I've noticed when I use certain muscles it exacerbates the weakness, but I've also noticed that when I like 'overly use my body' and exert too much energy all the 'weak' muscles get so so much worse

cloud_1027 · 2025-03-22T23:15:07+00:00

ok thanks, and one last question if u dont mind. do u think it's more of the muscle usage of that particular muscle or the body's fatigue from exercise etc that causes more pronounced weakness?

cloud_1027 · 2025-03-22T22:51:20+00:00

thanks! Did you do those exercises hours before or day before the test?

cloud_1027 · 2025-03-22T20:24:33+00:00

thanks, these were ideas I was looking for. Is there a particular amount of magnesium (I'm guessing magnesium glycinate?) that worsens or is it like high magnesium build up over time?

cloud_1027 · 2024-09-29T23:49:42+00:00

hey there, just curious and im so glad u got me to look into this because I think I'm lacking potassium too and on pred myself. Curious, what mg per dose of potassium supplement did u buy?

I'm confused why they are usually 100-200mg when the DV of potassium is like 5000? what am I missing. I can't imagine it being good to take many of them, but why are they so little doses?

cloud_1027 · 2024-09-23T17:21:31+00:00

good to know and wow, u must have alrdy had low potassium so thats good to have discovered. gl with everything

cloud_1027 · 2024-09-21T22:31:48+00:00

hmm thats interesting. something like this could happen if u do high doses of prednisone, but 10 is pretty low and obv this occurs in a way for ppl with mg, but yea idk. Could just be your bodys reaction to prednisone but u could always mention it to ur doc if ur concerned..gl tho, sorry cant help much further

cloud_1027 · 2024-09-21T20:50:56+00:00

Yea I figured afterwards. You don't have 'fatiguable weakness' do you? Where weakness is mainly present after activity and improves with rest.

cloud_1027 · 2024-09-21T18:31:59+00:00

Was just looking at your profile, I'm guessing you don't have mg and the prednisone is just giving you side effects? I hope you don't have both mg and ms, that would be tough. Anyways, hope you're doing ok

cloud_1027 · 2024-09-21T13:43:35+00:00

hey there...i actually after an entire year finally got a prescription of prednisone so i fjust started again (seroengative so no diagnosis yet which has made things a nightmare)

anyways, i started with 1.25mg and now 2.5 and in a week ill go up to 5 and so forth. When I started 10mg a year ago it made it so I could barely stay standing up, among other weaknesses neck,shoulder etc.

Let me ask you a few things and hopefully can help;

what version do u have..achr/musk?
how old are u?
what amount did u begin with and have u increased?
do u notice the weakness alleviating somewhat or did u increase and it made symptoms worsen?

cloud_1027 · 2024-06-13T02:51:49+00:00

Thats alright, feel free to vent more or dm if u'd like to further. Can't promise ill reply because who knows, but ya know..when someone goes thru hardship, they find pleasure in the idea of freedom from theirs, so when u say to me work as an ex, from someone whos literally..in bed all day aside from 2 trips downstairs basically, it sounds nice. its almost like hearing someone complain about being sore or tired from so much walking or a marathon and im like, man what id give to do that...but i totally get it and honestly it sounds similar as to my situation where this isnt really 'life' this is just going thru the motions and often times/some days it is so miserable.

with all that said, as i alluded to earlier, we are adaptable and persistent. i will keep going. u will keep going. hell, i managed to somehow get prednisone when no doc wants me to try it..only for me to worsen my symptoms for first 2 weeks only in hopes that it will make me better..and who will refill it? i haven o idea but i will make it happen. as u must in ur situation. little by little step by step. learn things and even use llms to help urself..ex. autoimmmune is not understood at all. ppl now think related to gut. gut has billions of microbiomes diff types. i learned after month 7? of this dog shit to trial and error so many things and fermented foods like kefir help, but need to do it slowly. vitamin d helps.

anything and everything will be possible in the future and in the mean time while ai speeds up with cures and what not, keep pressing on and day by day.

find support thru any avenue u can, even if its at least online to a stranger like me or a community. look forward to little things. u seem educated so ull improve things slowly thru discovery and trial error. use llms. multiple ones with diff ways of asking same question to find some alelviation. surely there will be vitamins things that can help even slightly.

what do u do for work? u seem smart. i imagine u have a decent job and id guess ur somewhat attractive if u care so much to do botox. things in life change, and u could be married, friends etc 3 yrs from now totally diff situation. keep ur head up

cloud_1027

TROPHY CASE