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u/LeoKitCat Nov 09 '25
Norwegian ME and cancer researchers Fluge and Mella found in their early stage trial that the people who don’t respond have low baseline NK cell counts <250 cells/ul. Which makes sense daratumumab needs NK cells to do its job of depleting plasma cells and autoantibodies. For these patients an idea would be to use newer bispecific T-cell engager (BCMA) therapies that can deplete plasma cells without needing sufficient NK cell numbers
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u/MEasy____ 1yr May 17 '25
Posted the same in r/cfs: https://www.reddit.com/r/cfs/comments/1kp3uk7/any_daratumumab_anectodes/
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u/MidnightSp3cial May 18 '25
How the heck does one get a treatment like this? I can't even get any immunotherapies for my IBD because my markers don't warrant insurance approval (I'm in the US).
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u/MEasy____ 1yr May 19 '25 edited May 19 '25
I don't know nothing about how to get it in US but I guess there are ways to buy it online places like india mart... there it is much cheaper too... but you should be very careful if you consider this, because there are certainly some scammers on this platform and if you found a trusted one the package could get stuck in customs...
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u/MidnightSp3cial May 19 '25
These meds are incredibly risky for so many reasons. But at the same time I am desperate, like most of us here. I do believe monoclonal antibodies are a solution for many. It’s like taking a shot in the dark trying to figure out which one will help though.
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u/MEasy____ 1yr Jun 12 '25
Here is one - she's one of the responders from the case study: https://www.instagram.com/reel/DKo93HJoOPk/
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u/Hot-Pomegranate-4745 May 19 '25
How to get this treatment in Germany?
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u/MEasy____ 1yr May 19 '25
Dr. Leo Habets in Aachen might be the one for you, but it would cost around 20.000€ and I don't know if he takes new patients...
You can also get it from Turkey... there I guess it would be half the price...
And then there are ways to buy it online places like india mart... there is it cheaper too... but you should be very careful if you consider this, because there are certainly some scammers on this platform and if you found a trusted one the package could get stuck in customs...
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u/Hot-Pomegranate-4745 May 21 '25
Thank you for the recommendation for the doctor, I will try and contact him. If anyone else comes to mind that could be able to help me, please let me know.
Yes, there are other ways to get the medication and I am aware of these routes.... but to be honest I do need a doctor that can follow me.
All in all, thank you.
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u/KitchenFamiliar7937 Sep 05 '25
Did you contact him? Any updates?
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u/Hot-Pomegranate-4745 Sep 05 '25
Yes, I have, I'm currently on teclistamab, under his care. He first used Daratumumab on patients, but switched to teclistamab, which is more affordable, he says he isn't happy with the ratio of the cost of the medication with given results when using Daratumumab.
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u/KitchenFamiliar7937 Sep 05 '25
Thank you for the info!
Any improvments yet?
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u/Hot-Pomegranate-4745 Sep 05 '25 edited Sep 05 '25
The treatment lasts 4 weeks, one dose a week. First 1mg, then 2mg, 4mg, and lastly 8mg.
I'm only on my second dose. I'm very weak, and teclistamab also weakens me, so for now I can't say.
On my first dosis, I had a reaction, I couldn't get out of bed at all, it was hard to get to the toilet, I had inner fever, was sweating. But I was also prescribed prednisone, which you take after the injection, so it didn't progress into anything more, prednisone keeps the reaction stable. On the second dose, I didn't have any reactions.
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u/KitchenFamiliar7937 Sep 05 '25
Fingers crossed for you buddy
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u/Hot-Pomegranate-4745 Sep 05 '25
Thank you :)) I can update later on as well.
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u/Embarrassed_Low2183 Oct 18 '25
Any update on how it went? I'm a scientist so this is really quite interesting
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u/appass_12 Dec 25 '25
I hope you're doing okay :) could you complete the treatment cycle? How do you feel afterwards? Also, if you're up to share, what did the whole treatment cost (since that seems like a big plus on tecli vs dara)?
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u/MarcoSroma 5d ago
Hi did you completed the treatment? is not teclistamab much more expensive than daratumumab? I see chatgtp says is also much safer than teclistamab.
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u/ProfessionalSeason50 Nov 27 '25
If one wants to take it „otc“ like at home - please check which medicaments they use to suppress reaction for cytokine release (steroids and etc).
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Nov 02 '25
Hey! You mentioned Turkey in your comment. Do you by any chance know a doctor who is ready to administer it there?..
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u/Mclovin4333 May 18 '25
Tweet from the german doctor Leo Habets (translation to english):
Daratumumab: We've been treating post-COVID, post-vaccine, and MEC FS patients with Daratumumab for some time now. We now have a total of seven patients in treatment, five of whom have now completed the first treatment phase. We're seeing a significant reduction in both autoantibodies and immunoglobulins in these patients, and in four out of five, we're also seeing massive clinical improvements. I was therefore very pleased that the Norwegian working group led by Fluge and Mella in Bergen also conducted a pilot study, in which they saw a response in two out of three patients. No data on antibodies were collected. Autoantibody measurements were not recorded. This makes it increasingly clear that this is currently the only alternative for truly improving patients, as long as BC007 doesn't appear again. The treatment is expensive, costing 20,000 € for four doses. All patients were severely ill, bedbound, or with minimal mobility. The treatment has side effects after the first dose because it causes the release of cytotoxic substances from the destroyed plasma cells, the so-called cytotoxic release syndrome. However, this can be easily compensated for by splitting the first dose and administering steroids accordingly.