6 ms·

The patient was on immunosuppressants.

by kgc 2y ago

mlhpdx 2y ago
This. I’m stupefied that they would include someone in immunosuppressants in such a study. It’s pointless since requiring them in a “cure” makes it largely worse than the disease (when well controlled).
- Projectiboga 2y ago
  Hi type 1 here. Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent. Type 1 diabetes is a wild condition, when my blood sugar drops, subsections of my brain switch off. Low sugars are very emotionally bleak. There is a whole set of post traumatic stressors as part of this. 35 years ago I could just walk into a pharmacy and buy insulin without a prescription, maybe the pharmacist might as a couple of questions to at least try and be sure I need it, and that insulin was maybe $30 cash with no insurance and that was enough for a month. So everything might be $70 for an entire month w 5 blood sugar tests per day. Now a months supplies is in the hundreds of dollars. This stuff doesn't involve much more to manufacture, just layers of beauracy and markups. So yes having to take a cheap pill or two every day with the worst case being a revertion to being insulin dependent is worthwhile. Now side effects of the immune drugs might maybe be worse, but I doubt that. And this is a pilot to get FDA approval to test genetically modified beta cells that a type 1 wont destroy. Thanks for any understanding and compassion you can bring to this discussion.
  - jcims 2y ago
    My youngest was diagnosed with type 1 diabetes at 14 and it has been a tremendous emotional and physical burden on her. It's so encouraging to see research in this area and the faintest glimmer of a hope for a hope that she'll find relief.
  - ainiriand 2y ago
    My wife has a closed-loop system here in Germany, that is a small pod she changes every 3 days with the insulin loaded into and a wireless monitoring device in the arm that syncs to the phone. She is way into 95% or more in range and she lives a normal life. I think immunodepressants would not be the solution for her.
    - zbyforgotp 2y ago
      What is the range that she is keeping?
      - ainiriand 2y ago
        70-180.
    - cut3 2y ago
      Similar story for my partner in the USA.
    - thecosas 2y ago
      I've had Type 1 diabetes for over 30 years and this is me. I still bolus for meals, etc. but am set up with Loop [0] on my phone and watch, omnipod insulin pumps, and a Dexcom G7 CGM for glucose readings. It's been fantastic. There are other open source projects as well, including Trio [1]. While these treatment options are so much better than even 10 years ago, the supplies can get very expensive if you don't have health insurance (in the US anyway). Luckily I do. One company working on functional "cures" is Vertex [2]. They have one which requires immunosuppressive drug therapy alongside stem cell treatment (VX-880) and another which involves encapsulated stem cells which does not (VX-264). I'm sure there are many other companies working similarly to the one highlighted in this article. Personally, given the great control I have right now, my insurance covering a good portion of the supplies, and the relative ease of use of the Loop app, I wouldn't take immunosuppressive therapies. That said, I know the calculus is different for everyone; it's really a matter of personal circumstance and in some cases, luck. Either way, I'm glad that research is being done and scientists are working on these various approaches. It's been an incredible 30 years I've been able to see with therapies advancing! [0] https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ [1] https://docs.diy-trio.org/en/latest/ https://docs.diy-trio.org/en/latest/ [2] https://www.vrtx.com/our-science/pipeline/type-1-diabetes/ https://www.vrtx.com/our-science/pipeline/type-1-diabetes/
  - boltzmann-brain 2y ago
    is it possible for a type 1 diabetic to not know and live their life fully untreated? By this I don't mean every type 1 diabetic, what I'm asking is whether it's possible for someone to be like this, due to their specific health circumstances.
    - looperhacks 2y ago
      It's not possible. Type 1 diabetes stops the production of insulin, which is generally required for survival.
    - solveit 2y ago
      I'm not quite sure how exactly to interpret your question, but untreated type 1 diabetes usually kills you within five years of diagnosis.
      - boltzmann-brain 2y ago
        i'm asking about what may happen when the illness isn't, in your words, usual
    - TrackerFF 2y ago
      My in-law (brother) got what is called diabetes type "1.5", or LADA (latent autoimmune diabetes in adults), at the ripe age of 40. It is like type 1, but much, much slower progressing - hence why it shows up at adult age, compared to childhood. Unlike type 2, you can't keep it under control by lifestyle changes. My in-law is a physically fit person with a good diet, and has been his whole life. In any case, after the onset of symptoms, he had to get treatment. No treatment leads to further organ damage, which eventually leads to death.
      - dghughes 2y ago
        Possibly caused by a virus. A person can develop type 1 diabetes from the effects of a virus like measles and other viruses. I don't think many people are aware of that.
  - sgmoore 2y ago
    > Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent As a Type 1 diabetic, I'm not sure I would agree. Surely immune suppressants would suppress our whole immune system not just the faulty bit which opens us up to all sorts of problems. I don't think that is someone I would like to risk just to avoid taking insulin. Mind you I have to confess my attitude might be affected by the fact that I don't have to pay for insulin.
- drivebycomment 2y ago
  From the article: > Because the woman was already receiving immunosuppressants for a previous liver transplant, This makes sense - this was the first trial, so doing this on a person already on immunosuppressants minimizes risk while still validating the basics of if it works at all in the first place.
- heisenzombie 2y ago
  I believe it’s already reasonably common to give a person Type 1 diabetes a pancreas transplant if they have another transplant and will therefore be taking immunosuppressants anyway. It’s true that you wouldn’t do this unless they were already needed, say, a liver transplant.

The patient was on immunosuppressants.

by kgc 2y ago

The patient was on immunosuppressants.

This. I’m stupefied that they would include someone in immunosuppressants in such a study. It’s pointless since requiring them in a “cure” makes it largely worse than the disease (when well controlled).

Projectiboga 2y ago
Hi type 1 here. Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent. Type 1 diabetes is a wild condition, when my blood sugar drops, subsections of my brain switch off. Low sugars are very emotionally bleak. There is a whole set of post traumatic stressors as part of this. 35 years ago I could just walk into a pharmacy and buy insulin without a prescription, maybe the pharmacist might as a couple of questions to at least try and be sure I need it, and that insulin was maybe $30 cash with no insurance and that was enough for a month. So everything might be $70 for an entire month w 5 blood sugar tests per day. Now a months supplies is in the hundreds of dollars. This stuff doesn't involve much more to manufacture, just layers of beauracy and markups. So yes having to take a cheap pill or two every day with the worst case being a revertion to being insulin dependent is worthwhile. Now side effects of the immune drugs might maybe be worse, but I doubt that. And this is a pilot to get FDA approval to test genetically modified beta cells that a type 1 wont destroy. Thanks for any understanding and compassion you can bring to this discussion.
- jcims 2y ago
  My youngest was diagnosed with type 1 diabetes at 14 and it has been a tremendous emotional and physical burden on her. It's so encouraging to see research in this area and the faintest glimmer of a hope for a hope that she'll find relief.
- ainiriand 2y ago
  My wife has a closed-loop system here in Germany, that is a small pod she changes every 3 days with the insulin loaded into and a wireless monitoring device in the arm that syncs to the phone. She is way into 95% or more in range and she lives a normal life. I think immunodepressants would not be the solution for her.
  - zbyforgotp 2y ago
    What is the range that she is keeping?
    - ainiriand 2y ago
      70-180.
  - cut3 2y ago
    Similar story for my partner in the USA.
  - thecosas 2y ago
    I've had Type 1 diabetes for over 30 years and this is me. I still bolus for meals, etc. but am set up with Loop [0] on my phone and watch, omnipod insulin pumps, and a Dexcom G7 CGM for glucose readings. It's been fantastic. There are other open source projects as well, including Trio [1]. While these treatment options are so much better than even 10 years ago, the supplies can get very expensive if you don't have health insurance (in the US anyway). Luckily I do. One company working on functional "cures" is Vertex [2]. They have one which requires immunosuppressive drug therapy alongside stem cell treatment (VX-880) and another which involves encapsulated stem cells which does not (VX-264). I'm sure there are many other companies working similarly to the one highlighted in this article. Personally, given the great control I have right now, my insurance covering a good portion of the supplies, and the relative ease of use of the Loop app, I wouldn't take immunosuppressive therapies. That said, I know the calculus is different for everyone; it's really a matter of personal circumstance and in some cases, luck. Either way, I'm glad that research is being done and scientists are working on these various approaches. It's been an incredible 30 years I've been able to see with therapies advancing! [0] https://loopkit.github.io/loopdocs/ https://loopkit.github.io/loopdocs/ [1] https://docs.diy-trio.org/en/latest/ https://docs.diy-trio.org/en/latest/ [2] https://www.vrtx.com/our-science/pipeline/type-1-diabetes/ https://www.vrtx.com/our-science/pipeline/type-1-diabetes/
- boltzmann-brain 2y ago
  is it possible for a type 1 diabetic to not know and live their life fully untreated? By this I don't mean every type 1 diabetic, what I'm asking is whether it's possible for someone to be like this, due to their specific health circumstances.
  - looperhacks 2y ago
    It's not possible. Type 1 diabetes stops the production of insulin, which is generally required for survival.
  - solveit 2y ago
    I'm not quite sure how exactly to interpret your question, but untreated type 1 diabetes usually kills you within five years of diagnosis.
    - boltzmann-brain 2y ago
      i'm asking about what may happen when the illness isn't, in your words, usual
  - TrackerFF 2y ago
    My in-law (brother) got what is called diabetes type "1.5", or LADA (latent autoimmune diabetes in adults), at the ripe age of 40. It is like type 1, but much, much slower progressing - hence why it shows up at adult age, compared to childhood. Unlike type 2, you can't keep it under control by lifestyle changes. My in-law is a physically fit person with a good diet, and has been his whole life. In any case, after the onset of symptoms, he had to get treatment. No treatment leads to further organ damage, which eventually leads to death.
    - dghughes 2y ago
      Possibly caused by a virus. A person can develop type 1 diabetes from the effects of a virus like measles and other viruses. I don't think many people are aware of that.
- sgmoore 2y ago
  > Since our errant immunity is localized on the insulin producing beta cells being on immune supressants would still be better than being insulin deoendent As a Type 1 diabetic, I'm not sure I would agree. Surely immune suppressants would suppress our whole immune system not just the faulty bit which opens us up to all sorts of problems. I don't think that is someone I would like to risk just to avoid taking insulin. Mind you I have to confess my attitude might be affected by the fact that I don't have to pay for insulin.
drivebycomment 2y ago
From the article: > Because the woman was already receiving immunosuppressants for a previous liver transplant, This makes sense - this was the first trial, so doing this on a person already on immunosuppressants minimizes risk while still validating the basics of if it works at all in the first place.
heisenzombie 2y ago
I believe it’s already reasonably common to give a person Type 1 diabetes a pancreas transplant if they have another transplant and will therefore be taking immunosuppressants anyway. It’s true that you wouldn’t do this unless they were already needed, say, a liver transplant.