Eledon - an insulin injection free life?

[urbanracer]

Folks I cannot find Eledon in response to a forum search so I hope I am not duplicating information here.
This is something that I recently came across via social media and have since looked at other information sources. It seems to be valid.
Katie Beth Hand is patient #9 on the Eledon Trial and she is now living without insulin injections in what appears to be a novel approach to immuno suppressant drugs.
She is sharing lots of information via Facebook videos, Instagram and Youtube. so if you search for her on-line you will find some really interesting stuff.
Kinda looks promising.

 

[CheeseSeaker]

A step forward potentially, but not a cure.

100% Insulin Independence: Why Eledon’s Breakthrough is a Pillar, Not a Cure | Diabettech - Diabetes and Technology

Eledon Pharmaceuticals recently achieved 100% insulin independence in an early-phase islet transplant trial using its anti-CD40L drug, tegoprubart. It’s a massive step forward in transplant immunology that avoids the toxicity of standard drugs. But why isn't it a cure yet, and how does it fit...

www.diabettech.com

 

[Jaylee]

A step forward potentially, but not a cure.

100% Insulin Independence: Why Eledon’s Breakthrough is a Pillar, Not a Cure | Diabettech - Diabetes and Technology

Eledon Pharmaceuticals recently achieved 100% insulin independence in an early-phase islet transplant trial using its anti-CD40L drug, tegoprubart. It’s a massive step forward in transplant immunology that avoids the toxicity of standard drugs. But why isn't it a cure yet, and how does it fit...

www.diabettech.com

I was thinking this.. I was reading about similar stuff in the new scientist 4 decades ago?

 

[Hopeful34]

I think the difference is that in previous trials/patients they had to take immunosuppressant drugs for the rest of their lives, whereas this trial has a drug given once beside the islet cells.

 

[CheeseSeaker]

I think the difference is that in previous trials/patients they had to take immunosuppressant drugs for the rest of their lives, whereas this trial has a drug given once beside the islet cells.

Yes - its less invasive (fewer side effects) but couldn't be rolled out as a cure - but does show more promise than the 4 decades old solution @Jaylee remembers (though very similar lines).

Ultimately its interesting but unlikely to be a cure all for us - for a good bit of time and development at least.

 

[sgm14]

I think the difference is that in previous trials/patients they had to take immunosuppressant drugs for the rest of their lives, whereas this trial has a drug given once beside the islet cells.

That's not what I took from a report on a different patient who was said to be "on a immunosuppression regimen" and had taken tegoprubart for the whole of the 18 months since the procedure (and I assume she would have to continue to take it for the rest of her life).

Difference seems to be that this immunosuppression drug does not appear to have the extremely serious side-effects that the others have.

 

[Hopeful34]

Apologies I obviously read it too quickly!

 

[Grant_Vicat]

That's not what I took from a report on a different patient who was said to be "on a immunosuppression regimen" and had taken tegoprubart for the whole of the 18 months since the procedure (and I assume she would have to continue to take it for the rest of her life).

Difference seems to be that this immunosuppression drug does not appear to have the extremely serious side-effects that the others have.

Interesting @sgm14 ! I have classed myself as cured for the last 12 years in that I ended 54 years of injecting insulin by having a pancreas (and kidney) transplant. I understand the reasons that the Diabetes and Trrsansplant Departments do not class me as cured, but it certainly has felt like it. You are right about the side effects of current immunosuppressants. I have been on Tacrolimus (listed as toxic to the transplanted pancreas in @Jaylee 's link above) for 12.5 years. Recently the levels of Amylase in my blood would indicate (in the words of a consultant) that my transplanted pancreas is getting tired. As I still have my original one I shall at some stage return to administering insulin once my "holiday" has ended.

 

[Antje77]

I have classed myself as cured for the last 12 years in that I ended 54 years of injecting insulin by having a pancreas (and kidney) transplant. I understand the reasons that the Diabetes and Trrsansplant Departments do not class me as cured, but it certainly has felt like it.

I think you could count yourself as cured from diabetes because you need to take the immunosuppressants to protect the kidney that allows you to live anyway. The bonus pancreas is just hitching a ride on the back of your kidney transplant medication. Rooting for your tired old second hand pancreas to hang in there and keep doing its thing for a long time.

A step forward potentially, but not a cure.

100% Insulin Independence: Why Eledon’s Breakthrough is a Pillar, Not a Cure | Diabettech - Diabetes and Technology

Eledon Pharmaceuticals recently achieved 100% insulin independence in an early-phase islet transplant trial using its anti-CD40L drug, tegoprubart. It’s a massive step forward in transplant immunology that avoids the toxicity of standard drugs. But why isn't it a cure yet, and how does it fit...

www.diabettech.com

Thank you for adding a balanced and very informative link to this thread!
I'm always positively impressed by diabettech.com and personally I count it as a trusted source.

 

[LittleGreyCat]

I have often wondered why immunosuppressants are not considered for T1 on the basis that most T1 is due to your own immune system attacking your Beta cells.
Research a few years back revealed that there were "guerrilla" Beta cells disguising themselves as Alpha cells to try and avoid the immune system attack, so a prospect of Beta cell regeneration.
I tentatively assume that the well understood insulin treatment carries far less overall risk than the immunosuppressants.

 

[Grant_Vicat]

I have often wondered why immunosuppressants are not considered for T1 on the basis that most T1 is due to your own immune system attacking your Beta cells.
Research a few years back revealed that there were "guerrilla" Beta cells disguising themselves as Alpha cells to try and avoid the immune system attack, so a prospect of Beta cell regeneration.
I tentatively assume that the well understood insulin treatment carries far less overall risk than the immunosuppressants.

I think your assumption is spot on @LittleGreyCat but the last thing I would want to do is scaremonger. The other problem is that not all Type1s are diagnosed quickly enough. The immunologists told me that one of the reasons that I am not considered cured is that it is possible for diabetic complications to continue. I was diagnosed as having early Charcot Foot only 2 months after receiving a fully functioning pancreas. Although my feet are not obviously affected, walking without orthotic shoes can cause gout like pain. So I follow their advice!

 

[EllieM]

I tentatively assume that the well understood insulin treatment carries far less overall risk than the immunosuppressants.

That is what I have always assumed. But if you are having a kidney transplant anyway it makes perfect sense, particularly if your original pancreas remains so it can still pump out the rest of the many good things that pancreases do should your new pancreas be rejected.

But transplant technology has come on a long way over the last thirty years. I still remember my step-grandmother, a senior anaesthetist, telling me that she didn't think transplants were worth it because the immunosuppressants were too horrible. (This was in the 1980s).

 

[Antje77]

I tentatively assume that the well understood insulin treatment carries far less overall risk than the immunosuppressants.

Apart from the overall risk, immunosuppressants have rather serious and nasty side effects. I'd take insulin over immunosuppressants any day!

I have often wondered why immunosuppressants are not considered for T1 on the basis that most T1 is due to your own immune system attacking your Beta cells.

Most T1's are diagnosed when enough beta cells have been killed to need insulin anyway. Why would you want to add immunosuppressants to that?
There are large trials with Tzield to postpone insulin dependence in those diagnosed very early, before they need insulin.

 

[Nicola M]

Apart from the overall risk, immunosuppressants have rather serious and nasty side effects. I'd take insulin over immunosuppressants any day!

I wouldn’t say they have any worse or nasty side effects than any other medication. The one I’m taking has very similar side effects to paracetamol/ibuprofen which millions of people take every day!