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'It's all gone': CAR-T therapy forces autoimmune diseases into remission

nature.com

21–30 of 34 posts

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#21
post #4

Earlier quoted context omitted.

chemo is well known for the treatment being worse than the disease...in the short term. when it works, the long term effect is well worth it.

This depends on the chemo dose. Curative chemo doses are worse in the short term. But palliative chemo usually improves quality of life.

I mean, it varies. I got curative (or, what was intended to be curative) doses of chemotherapy for my cancer, and I felt a bit worse after the first round (which is often intentionally harsh so the oncologist can dial it in afterwords) but as my cancer burden shrank I began to feel better and better. Getting more use of my left lung, which had been crushed by a mass the chemotherapy shrank, definitely helped. But I didn't get nausea from my first-line chemotherapy, either, which likely means I'm some form of genetic freak anyway.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#22

I have an autoimmune disease mentioned in the article. In looking through a group of which I am member I came across this interesting FDA alert about CAR-T therapy from a few weeks ago... https://www.drugs.com/fda/fda-investigating-serious-risk-t-c...

This is quite possibly due to most of these patients already receiving DNA-damaging chemo before CAR-T therapy. It also represents only 20 cases out of tens of thousands of doses.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#23
This seems unsurprising?

CAR-T is engineered to kill of CD19 expressing immune cells.

I’m sure you could take b-cell depleting antibodies as well and have it push your autoimmune disease into remission. And they are already used to treat autoimmune diseases like MS, Crohn’s, etc.

But depleting immune cells comes with a host of side effects. Risk of infection, even diseases that you’d otherwise easily fight off.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#24
post #20
post #3

Earlier quoted context omitted.

I understand that is similar to any chemotherapy no? But your body will rebuild it after ˜30days.

Chemotherapy typically isn't churn-and-burn to that extent, no. I got CAR T-cell therapy after one complete line and a partial line of chemotherapy for Primary Mediastinal B-Cell Lymphoma, a form of Diffuse Large B-Cell Lymphoma. My first line was DA-EPOCH-R, where DA means Dose-Adjusted and EPOCH-R is one letter for each of the specific drugs involved. The drugs are given in multiple 24-hour doses over five days wit…

When the last round of chemo is given to "destroy your immune system" doesn't it take like 2 weeks to see any signs of immune cells? I knew someone who passed away from leukemia last year because the various infections they contracted in that 2 week window caused irreparable lung damage.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#26
post #20
post #3

Earlier quoted context omitted.

I understand that is similar to any chemotherapy no? But your body will rebuild it after ˜30days.

Chemotherapy typically isn't churn-and-burn to that extent, no. I got CAR T-cell therapy after one complete line and a partial line of chemotherapy for Primary Mediastinal B-Cell Lymphoma, a form of Diffuse Large B-Cell Lymphoma. My first line was DA-EPOCH-R, where DA means Dose-Adjusted and EPOCH-R is one letter for each of the specific drugs involved. The drugs are given in multiple 24-hour doses over five days wit…

I am glad you are still with us to tell us your story. Thanks.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#27

> CAR-T therapy can have severe side effects, and recipients must first undergo intensive chemotherapy that kills off many of their existing immune cells. Damn, that really seems like a last resort.

I have MS. I'm in my mid-40s and have few day-to-day symptoms. I'm fairly lucky so far. But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever. The…

I was recently diagnosed with MS myself and put on some of the stronger medication from what I understand (Ocrevus) to make sure my future flares will not happen or at least be a less severe.

Was the vision loss from one eye really all that sudden for you? I am noticing my left seems to feel different and act slightly different when I'm tired. For now I am assuming that eventually I might also lose this eye because of the disease.

Wish you all the best

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#28

I have an autoimmune disease mentioned in the article. In looking through a group of which I am member I came across this interesting FDA alert about CAR-T therapy from a few weeks ago... https://www.drugs.com/fda/fda-investigating-serious-risk-t-c...

This is quite possibly due to most of these patients already receiving DNA-damaging chemo before CAR-T therapy. It also represents only 20 cases out of tens of thousands of doses.

myasthenia gravis patients already get chemo therapy to destroy their immune cells as part of the infusion protocols. That is a treatment and is not curative. If CAR-T works on MG, then it’s not the chemo that’s doing it.

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#29
post #23

This seems unsurprising? CAR-T is engineered to kill of CD19 expressing immune cells. I’m sure you could take b-cell depleting antibodies as well and have it push your autoimmune disease into remission. And they are already used to treat autoimmune diseases like MS, Crohn’s, etc. But depleting immune cells comes with a host of side effects. Risk of infection, even diseases that you’d otherwise easily fight off.

You could call the b-cell strategy CAR-T B (sorry for the terrible pun)

Re: 'It's all gone': CAR-T therapy forces autoimmune diseases into remission

#30
post #27

Earlier quoted context omitted.

I have MS. I'm in my mid-40s and have few day-to-day symptoms. I'm fairly lucky so far. But that could all change tomorrow. Some years ago, I woke up and couldn't see out of my right eye. It got better, but it took months to heal (and I was kind of lucky with that, too). I still have reduced grip strength from a 'flare' a few years back. What next? All it takes is one flare to make my life more difficult forever. The…

I was recently diagnosed with MS myself and put on some of the stronger medication from what I understand (Ocrevus) to make sure my future flares will not happen or at least be a less severe. Was the vision loss from one eye really all that sudden for you? I am noticing my left seems to feel different and act slightly different when I'm tired. For now I am assuming that eventually I might also lose this eye because o…

For me, it was! But honestly, it could have been weird before and I just didn't notice. I was in the shower and realized that I couldn't see my armpit to shave it. It did get better, though: I went to a specialist eye doctor when I started my medicine (gilenya) and he said it healed really well - he really couldn't tell there was ever an issue.

If it makes you feel better, a lot of folks that do get optic neuritis find that the regain at least some of the vision. And realistically, once I got used to everything being blurry in one eye, it was probably something I could live with if I absolutely have to. Definitely bring it up to your neuro, though, just to let them know. If it is a new symptom for you, you might call sooner rather than later.

And they were right about the meds, and I appreciate the approach. Fewer flares and less severe flares mean a better quality of life for us.

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