Autoimmunity and eds

[Joanna36]

I'm one of the very unfortunate who is collecting autoimmune diseases with my eds. I had taken steroids and started cellcept then within weeks became very ill and my immune system severely attacked my face and neck and he's in somehow. I feel labotomised tbh. It turns out I've had strepyococcal pneumonia.

So I've had to stop cellcept. My sinuses and throat are messed up from sjogrens so I feel i will always be at risk of bacterial infection if I take immune suppressant. Yet, the diseases are absolutely killing me literally.

Anyone else in this position? What on earth do you do?

[gillianTS]

Hi Joanna36

Not sure if I am completely comparable to you though have EDS and Behcet's disease a relatively rare type of auto immune condition, I have recently been reading and discussing Sjogren’s link with Behcet's, I also wondered about the Streptococcus pneumonia and how this manifested itself, did you wean yourself very slowly off the Cellcept as this can cause major withdrawl issues including sepsis.

Hope you can get to feel better really soon.

Gillian

[Joanna36 in reply to gillianTS]

Thanks Gillian. I've heard of bechets. It was suspected at one point. Has some crossover issues with Ank Spond. I've been advised to just stop the cellcept. I don't feel happy taking it at all with how ill I've been. I've asked for tests for immune deficiency. Thanks for your reply

[Barnclown]

Am so sorry joanna. Perhaps a bit of my story can be useful in some way:

Do you know your immunoglobulin (Igs) levels? I am hoping these were checked before you started myco. But, if they weren’t checked, you could probably make a strong case for checking them now as you are clearly predisposed to severe infection

I ask because i have the unusual combination of early onset autoimmunity (infant onset lupus + the usual overlaps inc sjogrens & small vessel vasculitis) AND immunodeficiency (hypogammaglobulinaemia G,A,M - aka Common Variable Immunodeficiency...a type of bone marrow dysfunction)

When i started daily myco several years ago, my lifelong predisposition to sudden severe onset persistence pattern urinary tract infections + pyelonephritis flared worse than ever (i’d also had a lifetime of persistence pattern sinusitis & respiratory infectiins & GI tract infections). About the same time rheumatology was running Bone Profile tests prior to IV osteoporosis treatment and discovered my hypogam below range Ig G,A,M levels...when we looked back at earlier lab results way before i started myco, we realised my hypogam immunodeficiency onset was prior to treatment with daily immunosuppression meds.

As a result, rheumatology referred me to immunology. Several years and lots of immunology tests etc later: am still on all my daily immunosuppressant meds inc myco, and immunology has me on daily antibiotics indefinitely. I attend both clinics regularly during the year and i’m doing well, all things considered (no apparent infections breaking through the daily antibiotics...and lots of bennefits from all my lupus meds)

Hope something in there helps...good luck...take care .... XOXO Coco

[Joanna36]

Hi Barnclown. I've asked for tests for immune deficiency. It won't be easy getting them. You need to be virtually dead in this country before you're taken seriously.

I'd feel terrified going on in immune suppression again but I'm so sick anyway without it. The antibiotics cause colitis. How does one manage both meds with all these huge risks. It's awful.

I've just had some more discoveries adding more confusion to all the problems. I can't believe I'm still walking around tbh. Well when I do get up and walk that is 😁

[Jenuingirl3]

Every 2 years I get diangosed with a new autoimmune disease. I understand. Sending love

[Mabsy]

My autoimmune diseases are stacking up now too.