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Did anyone use CellTrend to make a treatmet decision on Rituxan & did insurance pay?

Discussion in 'Rituximab: News and Research' started by Hopeful_In_San_Francisco, Dec 13, 2016.

  1. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    I am a patient of Dr. Kaufman at Open Medicine in Mtn View. I saw him today & took the CellTrend test. Any info would be great - esp on getting Rituxan approved by insurance for an off label use! All the best for the holiday season & New Year! THX
     
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  2. Gingergrrl

    Gingergrrl Senior Member

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    Am positive for 7 of the 9 Cell Trend Auto Abs which brings me to 11 Auto Abs total. I am doing high dose IVIG but plan to pursue RTX in future (pending my results after six months of high dose IVIG). Am really not sure if the Cell Trend tests will carry any weight w/insurance companies since not a U.S. Test and viewed as experimental. Keep us posted what you learn!
     
    Last edited: Dec 16, 2016
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  3. Hopeful_In_San_Francisco

    Hopeful_In_San_Francisco

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    Mine was only positive for 1 :-( My research shows it is very difficult to get insurance to pay for a $$$ drug used off label, like Rituxan would be for CFS. I am also on IVIG every 3 wks - did going to high dose help you at all?
     
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  4. Gingergrrl

    Gingergrrl Senior Member

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    I wish I was only positive for one :eek: but it's okay! I agree that getting insurance to pay for RTX off label next year is going to be a challenge. Will not be using a CFS diagnosis but it's still off label.

    I am just transitioning to the high dose IVIG now and tomorrow will be day three of my first 3-day split dose so too early to report back on it. Will go to a 4-day split dose if tolerate two go-rounds at this level which I suspect I will.

    I plan to do a thread on my entire IVIG experience in a few weeks to share all of the improvements that I have had. It's just too early and want at least one go-round of the high dose before I write about it.
     
    Last edited: Dec 16, 2016
  5. Firefly_

    Firefly_ Senior Member

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  6. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    What is a CellTrend test? Presence of autoantibodies is a sensible guide to treatment with rituximab in disease where we know the relevance of the autoantibodies. In ME we do not yet know that rituximab works nor which antibodies if any are relevant so I am doubtful that an autoantibody screen is helpful.
     
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  7. Joh

    Joh Inactivist

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  8. KristenSF

    KristenSF

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    I'm in the same boat as @Hopeful_In_San_Francisco *Waves to Hopeful!* :thumbsup:

    I'm also a patient of Dr. K's, sent my samples off to Berlin recently and tested positive for one. We're looking at IVIG as a next step if everything goes well (I've had some unrelated abnormal blood work lately that seems to be correcting itself).

    And thanks once again to @Gingergrrl! In reading between the lines, I don't think those of us having this test done would be on that road without her research.

    Maybe I'm wrong about that, but in any case, you're awesome @Gingergrrl :angel:
     
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  9. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    OK, I do not think this test will help. The studies on autoantibodies in the patients treated with rituximab showed that responses correlated with a fall in antibody but as far as I remember they did not correlate with whether or not you had the antibody in the first place. These findings are hard to interpret because a fall in autoantibodies simply indicates that the rituximab is getting rid of short term plasma cells - it does not indicate that the particular antibodies being measured are the ones that matter to the illness.

    I was surprised to see this test advertised as a diagnostic test. The original data indicated that healthy people have these antibodies in fairly similar amounts to people with ME/CFS. There may have been a slight difference in proportions but not enough to be used as a diagnostic or prognostic marker. My feeling is that these are research tests that are not yet suitable for any decisions on patient care.
     
  10. kms1990

    kms1990

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    @Jonathan Edwards , that is very interesting. And if that is the case may be a factor in my decision to try Rituxan. Can you point me in the direction of this original data? How would I review something like this?

    Thank you!
     
  11. BurnA

    BurnA Senior Member

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  12. kms1990

    kms1990

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  13. Gingergrrl

    Gingergrrl Senior Member

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    Thank you @KristenSF and yes that is my claim to fame (for whatever it is worth LOL).

    In my completely uneducated opinion, I felt the results of my Cell Trend tests were significant b/c I am positive on 7 of the 9 autoantibodies. They match with "Autoimmune POTS" and with the reactions that I've had to both cholinergic and anti-cholinergic meds.

    In addition b/c I already tested positive for the N-type CA+ Channel Ab and the anti GAD65 Ab, it was further evidence that my system is in this crazy autoimmune state cranking out autoantibodies to everything. I also have the two Hashimotos Abs for good measure.

    So, in my case we felt high dose IVIG was the next step and then we will evaluate for RTX depending how the IVIG goes. I have no doubt I am on the right path b/c of the improvements that I have had from IVIG. Am at my third day of IVIG right now and will be doing the high dose every three weeks until the end of May.

    My understanding is that RTX can help with autoantibody driven diseases (even if the disease does not have an official name).
     
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  14. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Antibodies to β adrenergic and muscarinic cholinergic receptors in patients with Chronic Fatigue Syndrome
    http://www.sciencedirect.com/science/article/pii/S0889159115300209
    [​IMG]
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    @CFS_for_19_years Thank you for posting the link to that article and the graphs and I will be back later with questions :D!
     
  16. ClaireKnowles

    ClaireKnowles

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    My CellTrend results were mostly very high/positive. I have CVID as well so am doing IV abx to hopefully wipeout some of the opportunistic infections and am also looking at IVIg and or Rituxan. Keep us posted and I'll do the same. I think insurance will pay for my IVIg, not sure about Rituxan yet.
     
  17. ClaireKnowles

    ClaireKnowles

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    https://www.ncbi.nlm.nih.gov/pubmed/26399744

    "Here, serum samples from a patient cohort from Berlin (n=268) and from Bergen with pre- and post-treatment samples from 25 patients treated within the KTS-2 rituximab trial were analysed for IgG against human α and β adrenergic, muscarinic (M) 1-5 acetylcholine, dopamine, serotonin, angiotensin, and endothelin receptors by ELISA and compared to a healthy control cohort (n=108). Antibodies against β2, M3 and M4 receptors were significantly elevated in CFS patients compared to controls. In contrast, levels of antibodies against α adrenergic, dopamine, serotonin, angiotensin, and endothelin receptors were not different between patients and controls."
     
  18. ClaireKnowles

    ClaireKnowles

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    In addition to the mostly high autoantibodies to cholinergic receptors, I have low IgG subclasses 1 and 3, like a number of other ME/CFS patients I know, yet the Berlin study reports the opposite, that a high correlation was found between levels of autoantibodies and elevated IgG1-3 subclasses.
     
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  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There were statistically significant differences for a few antibodies but that is nowhere near making a diagnostic test. I have looked at the original data and although there may be a statistical difference, it is not a big difference: there are patients and normals spread out across the range and the scatter looked pretty similar. It is not the sort of difference that leads to diagnostic tests like rheumatoid factor or anti-DNA antibodies. Moreover, if a subset of ME is autoimmune and these are the antibodies one would expect patients with antibodies to be the only ones to get better, but having antibodies did not as far as I can see predict response. Response correlated with antibodies going down and that is a much more indirect piece of evidence.

    If you look hard enough you can find unusual aspects of antibody profiles in anyone. That means that just have some odd antibodies is not going to predict response or indicate pathogenesis. The antibodies measured in these studies may be relevant but the correlation is sufficiently weak for me to think it is more likely to be some indirect connection.
     
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  20. ClaireKnowles

    ClaireKnowles

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    Possibly, but then some patients seem to respond positively to Mestinon. I'm sure there's undiscovered autoimmunity going on in a lot of patients. Kenny DeMeirleir says as the illness progresses, it becomes more autoimmune with time. I had low vitamin D and c3-c4 at least 5 years before I got sick with full blown neuroimmune disease.
     

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