New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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Rituximab and Graves/Thyroid eye disease

Discussion in 'Other Health News and Research' started by Hutan, Feb 1, 2017.

  1. Hutan

    Hutan Senior Member

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    Just lately it feels as if nearly everything can be fixed by rituximab.

    Yesterday I posted papers suggesting rituximab is useful for Raynaud's disease and granuloma annulare.

    I and my family have ME, Raynaud's and granuloma annulare. Which brings me to Graves eye disease...

    My Graves eye disease started roughly 10 years before the ME. Graves eye disease is also called thyroid eye disease - it is usually associated with hyperthyroidism. For me though, tests at onset and subsequently have never found a problem with my thyroid.

    So, this paper suggests that rituximab can help this condition too.

    The Pathophysiology of Thyroid Eye Disease (TED): Implications for Immunotherapy
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512192/
    Curr Opin Ophthalmol. Author manuscript; available in PMC 2012 Dec 3.
    Published in final edited form as: Curr Opin Ophthalmol. 2011 Sep; 22(5): 385–390.

    The link (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3512192/) gives the full author's manuscript. I found much of interest in it including:

    • In thyroid eye disease, fibrocytes from bone marrow infiltrate orbital tissues. Orbital fibroblasts from people with thyroid eye disease uniquely express several potentially important inflammatory molecules, including CD34, CD40, and many cytokines.
    • Selenium has been found to help in a double-blind trial
    • Anti-cytokine therapies (infliximab), t-cell targeting therapies, b=cell targeting therapies (rituximab) all seem useful
    • Rituximab led to improvements at one month and improvements were sustained at 1 year followup. Some possible rituximab side effects are noted.
    Edit, the 2012 paper above was just the first one I found. Here's a more recent one.
    Rituximab in the Treatment of Thyroid Eye Disease: A Review
    Neuroophthalmology. 2015 Jun; 39(3): 109–115.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5123122/
     
    Last edited: Feb 1, 2017
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  2. daisybell

    daisybell Senior Member

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    @Hutan - I have Graves too.... and raynauds...
    Fancy forming a NZ posse for getting rituximab?!!!!
     
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  3. OverTheHills

    OverTheHills

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    @Hutan @daisybell I have Raynauds and a past episode of hyperthyroidism, high ANA . Keep me posted if you're up to anything - I'm planning to wait a year or two for Ritux ($$) but I'd like to get on a good rheumatologists list sooner rather than later.

    Good luck
     
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  4. Hutan

    Hutan Senior Member

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    Absolutely.

    posseofgreatness-e1409242425250.jpg
    Umm. Any ideas how to proceed?

    @Jonathan Edwards, do you know any smart rheumatologists (or other specialists or researchers) in NZ that we could start talking to about rituximab for ME?

    My joint pain has been getting more severe lately and so I got my GP to test for rheumatoid arthritis last month - partly in the hope that I could start to check out the rheumatologists in my city and mention rituximab. But the test came back negative so probably she won't be keen to refer me on. (Although I noted with interest Jonathan's comments that the blood tests for RA aren't conclusive).

    Does anyone know if Ros Vallings is working with any specialist to think about rituximab treatment? @Cohen2, do you think Professor Tate at Otago Uni might have some ideas?

    I know we still don't have definitive proof that rituximab helps, but it would be nice to be getting an influential proponent informed and on side.

    Australia isn't far away for those of us in NZ. So, progress there would be helpful too.
     
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  5. OverTheHills

    OverTheHills

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    I asked Dr Vallings about good NZ rheumatologists this week (particularly Wellington ones). I didn't get the impression she is doing any pre/pro Rituximab work with specialists .
     
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  6. daisybell

    daisybell Senior Member

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    It's a shame.
    Plus I wonder what we will all do when Dr V retires, which she must do soonish I would think...
    I've got a raised ANA too - 1/1280, which was enough to get me a diagnosis of limited scleroderma, but I'm not currently under any rheumatologist - they're not very interested if you are apparently asymptomatic, or at least not actively deteriorating - ME or no ME!
     
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  7. OverTheHills

    OverTheHills

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    My ANA's not as high as yours Daisybell but similarly, theWellington public health rheumatologists are far too important to give an appointment to the likes of me.Sigh.
     
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