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Lecture by dr Hanne Thürmer - RituxME and current development

Discussion in 'General ME/CFS News' started by deleder2k, Apr 13, 2016.

  1. deleder2k

    deleder2k Senior Member

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    Lecture by dr Hanne Thürmer, Notodden Hospital

    From a lecture given at the local department of the Norwegian ME-association in Notodden, avd Telemark, Norway, February 8th 2016.
    Lecturer: Hanne Thürmer, dr. med at Notodden Hospital.

    Dr Hanne Thürmer is a senior consultant in the field of internal medicine and cardiovascular diseases, and has been involved in ME since 2009. She is also a member of the Norwegian ME-association’s Board of Medicine.
    Here are our notes from the lecture.


    It is available here: https://fryvil.com/2016/04/13/lecture-by-hanne-thurmer-notodden-rituxme-and-current-development/

    Some interesting points:

     
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  2. Snow Leopard

    Snow Leopard Hibernating

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    One of the more enlightened lectures we've seen this year!
     
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  3. TiredSam

    TiredSam The wise nematode hibernates

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    Good lecture. So is she saying there's no harm in getting a nitroglycerin spray and testing it to see if it helps?

    Probably should remember not to smoke at the same time

    upload_2016-4-13_16-6-13.jpeg
     
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  4. TiredSam

    TiredSam The wise nematode hibernates

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  5. deleder2k

    deleder2k Senior Member

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    She is a cardiologist. I assume she knows what she's talking about. It is however a prescription drug, and trying it out should be discussed with a GP/specialist.

    Interactions include low BP and PDE5-inhibitors like Viagra, Cialis (tadalafil):

    [​IMG]

    Drug: nitrolingual (glycerol trinitrate) Source: http://www.medbroadcast.com/drug/getdrug/Nitrolingual
     
  6. Marco

    Marco Grrrrrrr!

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    Interesting that they're finding both ritux and nitroglycerin helpful. It almost sounds like a kind of antiphospholipid syndrome (including apparent links with lymphoma).

    Co-incidentally in the last few days I've noticed for the first time that I have a touch of mottling of the skin (although thankfully it wasn't a sign of 'impending death' as Google first suggested ) which looks awfully like livedo reticularus .
     
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  7. ryan31337

    ryan31337 Senior Member

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    Funny - I had a tilt test today and was reading up beforehand on Nitrogylcerin as it is often used to provoke a response mid-test by enhancing vessel dilation. I saw that it was a potent NO booster and also came in patch form and thought surely someone should try that... :thumbsup:
     
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  8. Sasha

    Sasha Fine, thank you

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    I was wondering if that was the same stuff! I was still OK after about 20 minutes on my TTT so they gave me a squirt of something and I started to faint (but they put me horizontal before I did).

    So that's weird... some of us it's helping and some it's hurting?

    @Jonathan Edwards, is using nitroglycerin likely to be a test of who is likely to benefit from Rtx, if the people who do well on it have an autoimmune disease attacking the endothelium? Or have I jumped too many logical steps there?
     
  9. deleder2k

    deleder2k Senior Member

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    @Sasha, it looks to me that almost everyone with ME suffer from endothelial dysfunction. Dr. Newton did a study on this: http://www.meresearch.org.uk/our-research/completed-studies/endo-function/

    The experience from Haukeland regarding FMD looks to be the same. They conclude that we suffer from endothelial dysfunction. It looks like almost everyone of us has a lower FMD % rate than healthy controls. Since Rituximab doesn't work for all I don't know if one can use the test as biomarker for RTX.

    But who knows. Could it be that those who have the lowest FMD in the group of ME patients are more likely to respond from RTX?

    We need a cardiologist on this forum. This is a short list of drugs that increase vasodilation:

    adenosine, alpha blockers, alcohol, amyl nitrite, histamine-inducers, nitric oxide inducers, l-arginine, THC (?!), theobromine, minoxidil, papaverine, estrogen and apigenin.

    I have tried isosorbide mononitrate, glyceryl trinitrate (spray), l-arginine and l-citrulline and alcohol. Alcohol makes me feel almost healthy. My OI is gone when i drink a lot. Muscle spasms vanish. My brain fog and the extreme fatigue almost disappears. The only issue is that I need to drink a lot. After 6 beers ++ things start to happen.

    None of the other vasodilators had any effect on me. Perhaps the dosage was too low.
     
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  10. Sasha

    Sasha Fine, thank you

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    I get migraines and I think vasodilators are supposed to be a migraine trigger. :(
     
  11. deleder2k

    deleder2k Senior Member

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    @Sasha, they can be. I have headaches from time to time, but a single puff of nitrolingual didn't give me a headache. I could feel that something happened, but it didn't really hurt. For longer lasting nitrates like isosorbide mononitrate headache is a pretty common side effect. One start off by talking 30 mg and then titrate the dose. Taking ibuprofen could be helpful for a few days.

    A few patients of Haukeland received up to 120 mg Imdur (isosorbide mononitrate) for a while. I think I recall that 4/6 responded favourably. I haven't heard much about it since their patent application was filed.
     
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  12. deleder2k

    deleder2k Senior Member

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    Found this:
     
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  13. Sasha

    Sasha Fine, thank you

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    I wish I understood this stuff! It all seems so paradoxical. I'm seeing a cardio for my OI but I don't understand it all well enough to know what to suggest to him. If there's something that's safe, won't give me migraines and that I won't adapt to and be left worse off in the long run, I'd like to try it.

    I'm really glad that you've found something that gives you a bit of help!
     
  14. deleder2k

    deleder2k Senior Member

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    @Sasha, I don't understand it either. It is very complex stuff. Did you try to read this: http://www.meresearch.org.uk/our-research/completed-studies/endo-function/ ?


    Do also read this:

    Source: http://simmaronresearch.com/2015/01/chronic-fatigue-syndrome-rituximab-fluge-mella/


    The half-life of nitro spray is only 2-4 minutes, so I assume that if you get a headache it will vanish rather quickly.
     
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  15. Sasha

    Sasha Fine, thank you

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    Have you seen this thread? I've very confused about the relationship between all this stuff.
     
  16. deleder2k

    deleder2k Senior Member

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  17. Sasha

    Sasha Fine, thank you

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    I saw that thread but I don't understand any of it! o_O I just don't have the biomedical knowledge. A lot of people on the NO2 thread seem to be getting worse with that supplement. It all seems so random whether any of this NO-related interventions make us better or worse. I don't know what to suggest to my cardio (if anything).
     
  18. Marco

    Marco Grrrrrrr!

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    Same here deleder but a couple of glasses of wine is enough for me to banish the symptoms. Unfortunately alcohol is such a messy drug (as in it affects so many things) that it's difficult to attribute any benefit to any specific pathway.
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I think you should ask Dr Fluge. He is good at keeping up with jumping logic!
     
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  20. Sasha

    Sasha Fine, thank you

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    Pity he's not on the forum!
     
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