Understood - i hope there is this level of analysis in the daratumumab study but I think as a series of case studies it’s still a proof of concept...
Is it possible that natural variations in starting IgG would also have to play a factor in who was given a certain dose - that might be the same...
Maybe not cut it out but combine with something ? I really feel like they need to sort of track PEM better
as plasma cells grow back relatively quickly, like within a month or so, would that not put patients who did a smaller bit of chemo to no avail,...
Oh i wouldnt expect these doctors to do anything else, but I chose myself what I wanted. Thats not going to be something everybody can and should...
yes hopefully, there are a bunch of drugs but 1) IgG lowering is hard and dangerous for reasons said in this forum. 2) The norwegians are trialing...
As said before i am invisioning a future where i get this again, so a non-cyclo drug is essential for me in the future. I hope dara passes, but...
scepticism is fine and expected, but you cant have a randomsied placebo controlled trial with chemo, at all. trust me on this, when you spend days...
the treatments just before cyclo also hypothetically worked by reducing IgG, so if that was the case I believe it’s just more evidence for the...
Was she getting worse before that though That’s what people seem to miss here ….
I am thinking if its useful to be able to post things like the actual data, including IgG and other values and timelines and stuff but in a write...
two important points that i think render this data sadly not very relevant 1) PEM of 12-72 hours was not diagnostic criteria. therefore in my...
yes fiull exercise no PEM, i went to a friends house the other day and cycled 20 miles and rock climbed. i feel liberated from PEM, no issues at...
Thank you, we also did a lot of bloods to try and track what was going on in order to understand it, this is important because I now am mentally...
I think I tried paxlovid in spring 2023f HBOT in summer 2023, SGB in winter 2023. No effect at all from any of these. This drug has been in a...
I had a feeling that any data presented would be met with a luke warm recentption here, even though there is enough data to present as a case...
about 5% of patients getter better with no intervention.
Yeah your right, I’m not discrediting the game changer that RTX was for certain autoimmune diseases either- but it’s clearly not the one for a...
There was not a chance I was getting better without medical intervention, i am actually finding it difficult to go back and reflect on how ill I...
Yes - and suffered for 2.5 years.
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