Canadian Society of Autoimmune Diseases

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Canada
Quebec, QC
Canadian Society of Autoimmune Diseases

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We are dedicated to improving the lives of people affected by autoimmune diseases through education, support and research. There are more than 80 forms.

In Canada, more than 7 million people live with an autoimmune disease.

10/01/2026

https://www.facebook.com/share/p/19wbHZJ9aS/?mibextid=wwXIfr

Kyverna Therapeutics has shared a letter with the SPS community about its clinical program for miv-cel (KYV-101), an investigational CAR T-cell therapy for stiff person syndrome.

Kyverna has announced positive one-year topline results from KYSA-8, its registrational trial in SPS. These follow the 16-week data Dr. Amanda Piquet presented at the American Academy of Neurology meeting in April. Kyverna says the one-year data will be included in its Biologics License Application to the FDA, which it expects to complete in the fourth quarter of this year. Full results haven't been released yet while the company prepares for FDA review.

We're grateful to Kyverna for keeping the SPS community informed, and to their team for spending time with so many of you at The SPSRF 2026 Symposium in June. Read CEO Warner Biddle's full letter here:
https://www.stiffperson.org/kyverna-update-2025-09-28

://www.stiffperson.org/kyverna-update-2025-09-28

09/30/2026

09/24/2026

1️⃣ Treatment on the trigger of bad antibodies (none currently accessible)

2️⃣ Treatments on our bad antibodies already formed (for life because we have not settled 1️⃣)

3️⃣ Treatments to survive the damage caused by the bad antibodies (for life because we have not settled 1️⃣ and only mitigate in 2️⃣)

Les causes encore en mode recherche et développement pour agir à la source et empêcher la création des anticorps qui nous détruisent

09/24/2026

A question challenged me in a post... on which medication you take which is immunosuppressive: therefore higher risks of infections and weakened immune system.

So here is my grain of salt on those approved in Canada for our autoimmune diseases

✳️Controntional immunosuppressants

✔️Methotrexate (generic, Metoject): rheumatoid arthritis (PR), psoriasis.

✔️Azathioprine (Imuran): PR, and common use in lupus and inflammatory bowel diseases (IBD)

• Leflunomide (Arava): PR

• Cyclosporine (Neoral): PR, psoriasis

✳️ Anti-TNF

✔️Adalimumab (Humira), etanercept (Enbrel), infliximab (Remicade), golimumab (Simponi), certolizumab (Cimzia): PR, spondylitis, psoriatic rheumatism, MII, psoriasis

✳️ Anti-CD20

✔️Rituximab (Rituxan): PR, vasculitis. Hypogammaglobulinemia, Stiff person syndrome

✔️Ocrelizumab (Ocrevus), ofatumumab (Kesimpta): multiple sclerosis (MS)

✳️ Other organic

✔️Tocilizumab (Actemra), sarilumab (Kevzara): PR, rhizomelic pseudopolyarthritis, giant cell arteritis

✔️ Abatacept (Orencia): PR, psoriatic rheumatism. Infections.

✔️ Belimumab (Benlysta), anifrolumab (Saphnelo): lupus

✔️ Natalizumab (Tysabri): MS, Crohn's disease. Progressive multifocal leukoencephalopathy (LEMP).

✔️ Secukinumab (Cosentyx), ixekizumab (Taltz): psoriasis, psoriasis, spondylitis.

✔️ Ustekinumab (Stelara), guselkumab (Tremfya), risankizumab (Skyrizi): psoriasis, psoriatic rheumatism, MII. Respiratory tract infections.

✳️ JAK inhibitors

✔️ Tofacitinib (XELJAnz), baricitinib (Oluminant), UPADacitinib (RinVOQ): PR, PSORIA rheumatism, SPONGLITIS

This list is not exhaustive but gives a good overview! Ask your medical team! If the real name of the drug ended in _mab it is a targeted immunosuppressant as I took my rituximab today

09/04/2026

A person in our group is looking to chat with a person with cryoglobulinemia like her. Write to me privately and I will put you in touch 🙂 thank you 🙏

09/04/2026

My September schedule... a little discouraging 😢

Today: Immunoglobulins

Sept 9: rituxamab (immunosuppressant)

Sept 17: immunoglobulins

Sept 23: rituxamab (immunosuppressant)

October 1: immunoglobulins

08/29/2026

For me, AI is a cognitive assistance tool and a precious medical follow-up during my bad days when my body takes all my energy and my head gets confused

She is like a resource that checks in all the encyclopedias of the world what I ask myself as a question

I use it to structure my ideas, facilitate their formulation, organize my thinking and preserve precious mental energy

She allowed me last week to give my doctor a document of my real daily life like a magical notebook that adequately reformulates broken and confused notes

She doesn't think of my place

She only knows my story if I tell her

She asks me adequate questions to better follow me medically

I bring him the material. She helps me make it accessible. Thank you 🙏

08/28/2026

What if the autoimmune disease was in our head?

👉 There will not be 30% of affected children / babies

👉 I would have a psychiatrist and not a neurologist, internist, rheumatologist, gastroenterologist, etc.

🙏 yes stress, your misunderstanding, depression of lack of energy affect us and amplify the symptoms of the disease!

🙏 Please stay close to sick people and make us laugh to get through our difficult days! Don't judge without knowing

Adresse

Québec
Quebec, QC

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