Anyone had CAR-T treatment for Scleroderma or Lupus? Any other CAR-T?

Posted by Alta Net @altabiznet, Jun 5 7:37pm

Multiple CAR-T treatments are available now through clinical trials. Most studies are in Phase I or just entering Phase II. Meaning these treatments are early on in the development. The limitations to getting CAR-T treatments via research are many. Inclusion criteria are strict and clinical studies are recruiting only in certain areas.

Some very promising results have been published in Lupus. Scleroderma has very limited Phase I data. Although CAR-Ts showed a big promise in advanced patients, toxicities are serious: cytokine release syndrome and neurological toxicities.

If you had CAR-T in autoimmune disease, please share your experience: response to treatment and how bad were toxicities. How long did it take to recover?
Any insights are appreciated.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Profile picture for wendyhope @wendyhope

@becsbuddy Good morning..reason Becky is Systemic Lupus, Sjögren’s & type 2 Diabetes (under control AIC 6.1🎉 been taking Hydroxy like 10 years approx. moderate Arthritis everywhere..
I want to get better not worse 😢
I’m glad to meet you!
Thank you,
Wendy

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@wendyhope
In case you are considering this treatment, for Lupus, there are many studies with CAR-T treatments that are recruiting now. As an example, there are three BMS Breakfree studies already ongoing. You can see the details in this link:
https://www.cartautoimmune.com/hcp
Breakfree-1 trial has multiple indications, including Lupus, Dermatomyositis, Systemic Sclerosis and RA. As a side note, Systemic Sclerosis is known to have ILD lung involvement similar to Sjorgren's. ILD is one of the primary endpoints for SSc. This version of CAR-T may be targeting more of the symptoms from multiple conditions, as opposed to single disease CAR-T. The decision, of course, is with your doctor. Breakfree-LE study is specifically for Lupus.

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For those who are considering CAR-T treatments, I am sharing a thought regarding multi-target CAR-T vs single disease CAR-T.
Under this link you can find three BMS sponsored CAR-T studies recruiting patients.
https://www.cartautoimmune.com/hcp
Breakfree-1 trial has multiple indications, including Lupus, Dermatomyositis, Systemic Sclerosis and RA. As a side note, Systemic Sclerosis is known to have ILD lung involvement similar to Sjorgren's. ILD is one of the primary endpoints for SSc. This version of CAR-T may be targeting more of the symptoms from multiple conditions, as opposed to single disease CAR-T. The decision, of course, is with your doctor. Breakfree-LE study is specifically for Lupus. Breakfree-2 study is in Neuroinflammatory diseases: Multiple Sclerosis and Myasthenia Gravis.

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Hi everyone, Scleroderma Research Foundation SRF posted latest presentations from the Scleroderma Patient Forum for ongoing clinical trials and recent drug approvals in systemic sclerosis.

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Hi everyone,
Here is a link to all clinical trials for CAR-T therapy in systemic sclerosis and other autoimmune disease posted on clinicaltrials.gov. It is interesting to note that quite a few studies are originated in China and those CAR-T treatments target multiple autoimmune diseases. Systemic sclerosis usually involves multiple body systems and multiple organs. Based on this, multi-targeted CAR-Ts may hold more of a promise. At the same time, disease specific CAR-Ts may have more strength against specific endpoints like ILD. It all depends on the symptoms. Only clinical data can tell which treatments are going to be more efficacious.

If you had CAR-T or considering it and have some more information from ongoing studies, please share your experience.
https://clinicaltrials.gov/search

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Scleroderma Research Foundation had their annual Patient Forum with presentations from lead physicians. Here is the link. Dr. Khanna presented CAR-T treatments currently in clinical trials as well as other new therapies in Systemic Sclerosis:

All recordings are now available on our YouTube channel. If you know someone who could benefit from this information—someone living with this disease, a friend, or a loved one—we hope you’ll pass it along.https://www.youtube.com/playlist

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Hello everyone,

Here is a real CAR-T patient story posted on YouTube. She had B-Cell Lymphoma and got cured after failing all other therapies. CAR-T treatments really work in B-Cell Lymphomas based on clinical experience starting from their approval in 2018.
In autoimmune diseases, CAR-Ts are still in Phase I-II clinical trials showing a promise, but with limited efficacy data. Toxicities are similar to what has been observed in blood cancer patients.

If you watch a full video, in the middle part of it, you will see the patient at the hospital during her first two weeks after CAR-T treatment, which involves hospitalization. The recovery period is not easy, but she endured the difficulties. Only you and your doctor can decide whether CAR-T is the right journey for you, as it involves chemotherapy and prolonged recovery. But the results may be promising.

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