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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

  1. S

    Breakthrough opens door to safer lupus drugs

    @Jonathan Edwards, a scientist I've spoken to said that BAFF is elevated in ME, and that a study will be published soon. April is normal. How could one interpret this? What are your thoughts?
  2. S

    Nitroglycerine

    Please check this out: Patent filing for the use of nitric oxide http://forums.phoenixrising.me/index.php?threads/patent-filing-for-the-use-of-nitric-oxide-with-or-without-b-cell-depletion-in-cfs.36592/
  3. S

    Is there any way I can be treated with rituximab privately?

    Will do. Done two infusions. No allergic reaction.
  4. S

    Is there any way I can be treated with rituximab privately?

    I jumped the gun. Couldn't wait any longer. I have no life. Waiting to 2021 or something was not an option. Mabthera: Day 0: 1000mg Day 14: 1000mg 3 months: 500mg 6 months: 500mg 9 months: 500mg 12 months: 500mg Pre medication: 20mg cetirizine and 120mg methylprednisolone (IV) before every...
  5. S

    Is Anyone Else Scared of Rituxan?

    Thank you again, @Jonathan Edwards. Soon everyone on PR will think like a real scientist :) Is the general rule to do frequent CD19+ tests whenever one is finished with a dosing schedule with RTX? That would be after one year if one have a total of 6 infusions. Norwegian daily Aftenposten...
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    Is Anyone Else Scared of Rituxan?

    The dosing schedule would be the same as used in the phase III study at Haukeland. The doctor is a oncologist. He hasn't suggested gammaglobulines. I was wondering if I should ask him if one could add into the mix if it is not harmfull.
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    Is Anyone Else Scared of Rituxan?

    Thank you for your answer. I'm only thinking from the perspective of a sick patient. Money is not an issue. Rituximab and continous use of IVIG/subcut GG is not contradicted in any way? I was thinking of doing both, then reducing GG gradually when (hopefully) I am in remission. I'm willing to...
  8. S

    Is Anyone Else Scared of Rituxan?

    @Jonathan Edwards, would a combination of IM immunoglobulin and RTX be subject to any problems? There are several reports of benefit from 5ml Gammanorm weekly in Sweden/Norway. Maybe it could speed up remission in combination with anti CD20?
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    Rituximab in India

    A summary of an old article in the Wall Street Journal (2012). I know Reditux has been widely available in India for some time, but I didn't know that Roche had their own version in the market. The drug is called Ikgdar and is made by Roche under the company name Emcure Pharmaceuticals Ltd...
  10. S

    High CD3-/CD16+/CD56 NK cells.

    @Jonathan Edwards, thank you for your answer.
  11. S

    High CD3-/CD16+/CD56 NK cells.

    Yeh.. Been tested for every virus that is possible in Sweden. 4 pages with blood tests!
  12. S

    High CD3-/CD16+/CD56 NK cells.

    I've had ME for 6 years and I feel like like I always do. Nothing new. I was bit by a tic 15 years ago, but didn't have any symptoms afterwards.. I have just done regular lyme tests provided by the public health care system in Sweden. What would you do? Try a few weeks on oral doxycycline?
  13. S

    High CD3-/CD16+/CD56 NK cells.

    But what does the high number mean? That the NK cells doesn't work properly? Or that they work their ass of??
  14. S

    High CD3-/CD16+/CD56 NK cells.

    I received some test results from the lab today: These tests are considered out of range: MCHC 31.6 (33-36) Neutrophiles (47.7 (55-70) Lymphocytes 45 (25-40) T Lymphocytes: CD3+/HLADR+ T-lymphocytes (relative) 0.9 % CD3+/HLADR+ T-lymphocytes (absolute) 27.2 (30-200) NK: NK CD3-/CD16+/CD56+...
  15. S

    Has Big Pharma caused us mitochondrial damage?

    Has Big Pharma casued us collateral damage? or is this this just conspiracybabble? http://www.globalresearch.ca/mitochondrial-collateral-damage-thanks-to-big-pharma/5447650
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    Will positive results from Norwegian/UK Rituximab trials be enough for insurance to pay in the U.S.?

    I am sure that you won't need to do phase 1, 2 and 3 in the U.S. I am not sure if the FDA got what they need when the study is published. I do however know that Haukeland University Hospital is prepared to have FDA and Norwegian Medicines Agency scrutinize their work. If I am not mistaken they...
  17. S

    Nitrates (isosorbide mononitrate) sold without prescription in the UK?

    Thank you, @user9876. I've heard from a friend that Weldricks Pharmacy ( https://www.weldricks.co.uk/ ) will sell Monosorb (isosorbide mononitrate) in a few days without a doctors prescription.
  18. S

    Nitrates (isosorbide mononitrate) sold without prescription in the UK?

    Thank you, @Hip Don't the NHS or some other carry a list of all medicines including their legal class? I find this odd. I found something here from the Royal Pharmaceutical Society : http://www.rpharms.com/support-pdfs/az-list-of-human-medicines-July-2010.pdf It says "P" for Monosorb which...
  19. S

    Nitrates (isosorbide mononitrate) sold without prescription in the UK?

    Is isosorbide mononitrate only available with prescription (doctor) in the U.K or is it listed as "pharmacy only" ? http://webcache.googleusercontent.com/search?q=cache:tHR7z0WqKLMJ:www.mims.co.uk/drugs/cardiovascular-system/angina/imdur &cd=1&hl=en&ct=clnk&gl=no Mims say it is "P-...
  20. S

    I took Nitroglycerin tonight and it helped! What does this mean?

    Where can one legally buy this in the U.K without a prescription? Online? http://www.chemistdirect.co.uk/nitrolingual-pumpspray-200-dose/prd-l66?utm_source=Sailthru&utm_medium=email&utm_campaign=order-confirmation Looks like a prescription isn't needed for the pump spray. I'd love to get...
  21. S

    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    @Jonathan Edwards, what is your take on all of this? You have probably seen it before, but it is always interesting to hear what you have to say about it. @alex3619, You think glyceryl trinitrate are safer than the L-Arginine and L-Citrulline combo? Looks like that combo have been used...
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    Patent filing for the use of nitric oxide with or without B-cell depletion in CFS

    http://www.ebay.co.uk/itm/NITROKOR-40-tabs-0-5-mg-/261822311037?pt=LH_DefaultDomain_3&var=&hash=item3cf5d36a7d Is there a pharmacy in Europe that ships nitro? I am not sure that buying something from Eastern Europe off eBay is wise.
  23. S

    New pilot study in the loop from the researchers at Haukeland

    http://forums.phoenixrising.me/index.php?threads/cyclophosphamide-and-rituximab-update.36023/
  24. S

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Aha, okey. So that means most patients experience a quick (24 hours) drop in lymphocytes count of approx. 23% (Range 18-47%) since B-cells vanish? I would assume that some could get Lymphopenia if one starts with low levels, but if it is just an instant thing related to B-cells and only B-cells...
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    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    I found a graph in your article that dazzled me: Can't get my head around how long a cycle is, do you know professor @Jonathan Edwards? Does it vary for each patient based on clinical response? And one last question: What are the dotted lines? I had this in statistics, but I can't recall...
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    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    That means that one will experience low IgA levels after the first RTX infusion until B-cells come back? I imagine that can be a few years! And what about IgE - does it influence it? Found an article about IgE here - Rituximab did not significantly lowered IgE. While it seems to that IGE in...
  27. S

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Thank you so much. I asked my immunologist about this, and he couldn't tell me much about it without reading up on the subject. He charged me 200 pounds. On the contrary you explain it in depth - instantly! Thank you very much. I owe you a book about birds (if you haven't got them all) This...
  28. S

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Thank you! What a brilliant paper. Very interesting. I've read that for a IgG test, coefficients of total variation is 5.1% (analytic and biological variation). Wouldn't every individual receiving Rituximab expect a significant decline in IgG levels? I can expect a significant decline in...
  29. S

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Safety of rituximab in rheumatoid arthritis: a long-term prospective single-center study of gammaglobulinconcentrations and infections. http://www.ncbi.nlm.nih.gov/pubmed/22285615 This gave me an idea.
  30. S

    Hypogammaglobulinaemia after rituximab treatment—incidence and outcomes

    Thank you, professor. I haven't been told by dr. Kogelnik that I will get 6 doses, I heard that they used the same dosing schedule as the Norwegians. 2x infusions (1 gram max) over 14 days, and then maintenance therapy for at 3, 6, 9, and 12 months. Interesting. Do we have any data on how...