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Rituximab and Graves/Thyroid eye disease

Hutan

Senior Member
Messages
1,099
Location
New Zealand
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.

Purpose of Review
Thyroid eye disease (TED) is a poorly understood autoimmune manifestation most commonly associated with Graves’ disease. Current nonspecific treatment paradigms offer symptomatic improvement but fail to target the underlying pathogenic mechanisms and thus, do not significantly alter the long-term disease outcome. The purpose of this review is to provide an update of the current understanding of the immunopathogenesis of TED and explore these implications for targeted immunotherapy.

Recent Findings
Orbital fibroblasts are integral to the pathogenesis of TED and may modulate immune responses by production of cytokines and hyaluronan in response to activation of shared autoantigens including thyrotropin receptor (TSHR) and insulin-like growth factor-1 receptor (IGF-R1). Fibrocytes share many of these phenotypic and functional features, suggesting a link between systemic and site-specific disease. Use of targeted immunotherapies in TED is limited, though data from the use Rituximab (RTX), a B cell depleting agent, are encouraging. Sustained clinical response has been seen with RTX in several reports, despite return of peripheral B cell levels to pretreatment levels. Additionally, this response appears to be independent to cytokine and antibody production, suggesting possible modulation of antigen presentation as a mechanism of its effect.

Summary
Progressive advances in the understanding of the immunopathogenesis of TED continue to spur clinical trials utilizing targeted immune therapies. Continued understanding of the molecular mechanisms of disease will expand potential treatments for TED patients and obviate the need for reconstructive surgical therapies.

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/
 
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OverTheHills

Senior Member
Messages
465
Location
New Zealand
@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
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
Fancy forming a NZ posse for getting rituximab?!!!!
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.
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
Does anyone know if Ros Vallings is working with any specialist to think about rituximab treatment?
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 .
 

daisybell

Senior Member
Messages
1,613
Location
New Zealand
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 .
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!
 

OverTheHills

Senior Member
Messages
465
Location
New Zealand
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!
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.