Search results

yes that makes sense, wow 120. So the current rationale is to limit long term use and there is some data in MS and SFN (which i have) of causing a sort of periodic remission, and being (as opposed to long term like 1 month +) safer somewhat that sustained use. I cant find much data on this but a...

me/cfs as long covid international doctors

what is the standard doseage for lupus?

As iv only responded to high dose steroids, i cant imagine that low dose stuff would be in anyway useful at all. The fact that its takes around 100mg+ to bring me close to pre-covid levels shows how substantial the inflammation people are dealing with. Yes, and GP monitoring bloods.

I am responding very very well to high dose steroids (60-100mg predi a day), my brain is maybe 80% of pre-covid on this stuff, and have now found someone to monitor me with a mammoth dose that is sometimes used in MS and SFN: 1000-1250mg a day for 3-5 days. Will report back in a few weeks if...

except i have taken a mab, not ritux in fairness, and it was EXACTLY like PEM fever/fatigue? so again i say, the dirth of data is the issue, and unless you were using rituximab in ME patients im not sure how you would know this, we find this out from these patients and the trials undertaken no?

I think thats very hard to extract, and in all honesty when i see you say things such as "cyclo may have worked because it stopped cancer fatigue" it makes me worried that there is not a comprehensive understanding of the experiences of Long COVID and ME patients here if im honest. From my...

i believe in the long term data melle published which was years iirc, the remissions patients were still doing very well and on the whole even better than the original ritx patients, placebo had the worse worsening as you can imagine

for clarity not the condition, side effects of the mab that feel crap and similar to a flu.....and therefore similar to ME just reports from patients i know who have takwn it, and reported side effects from infusions are here but many fold: https://www.rituxan.com/ra/treatment/side-effects.html

Even non ME/CFs patients are VERY likely to get transiently worse as these Mabs kick in, hopefully her doctor is helping her through a likely short but intense flare. As we know this is a long term game, fingers crossed for her. Cyclo clearly cant be blinded so yes, the data we have is the data...

https://ard.bmj.com/content/74/7/1474?ijkey=d54d4e31825cd90fecd9bd0233a7f7ec297ac95d&keytype2=tf_ipsecsha this is all i can find at the moment

do you have any good sources on bort and plasma cells in autoimmunity you could share specifically perchance? im not finding much online in terms of it being a part of a regieme that effects plasma cells that are not cancerous

Ah ok thats very very interesting and somewhat surprising, and i guess why classic protocols have focused so much on b cell biologics. Thanks

I have seen trials and papers for separate arms definitely, like rapamycin in MS in the ways you describe which I belive (although i am not sure about this) is mainly focused on T cells and cykotine signaling as opposed to b cell activity (although i did find a lab study on rapa and BAFF but...

Oh and just to add it definitely reduces my PEM, but its 100% still there. I can do weight lifting now, at my onset and prior to rapamycin I could not really walk so.......substaintial improvement, but still a long way to go

I am on rapamycin and its helped a lot, thank god I have a doctor who is willing to work with me basically. I am happy to see the trial definitely, I hope they are taking great efforts to separate patients who might have persistent/reactivated viruses screwing things up or it could end badly for...

Two questions regarding this 1) Why arent researchers and doctors exploring something like bortezomib which is cheap, and reduces both SLPC and LLPC specifically(alongside from what i understand red blood cells that make it an unpleasant drug, but nothing compared to the experience of ME/CFs or...

sorry just to update the person in remission isnt answering my messages, im guessing they are out living thier life but i cant give any full details without them regarding its use in long covid/Me

oh yes dont worry this will be respected

Yeah you are right, let me try and get back in contact with her and get as much info as possible. Obviously as is always the case single case studies need to be taken for what they are, and this isnt even a case study its a person online. Will report back with a fuller picture, i do know she had...