37 Comments
Several companies are investigating islet cell replacement therapies for people with T1D, some of which would require patients to be on immunosuppression therapies. Out of the following options, which of these outcomes would be the most meaningful and desirable for you?
You must be logged in to post a comment.
I chose “not having to plan insulin dosing,” because I have a hard time getting the timing right. I either go low before my meal is ready, or I go high after eating. It just never seems to be right other than on rare occasions.
I would also have liked to answer “>90% time in range or HbA1C <6%," as this is also very important to me. Unfortunately, I could only choose one answer and not having to plan insulin dosing seemed to me to be a solution to both.
I would choose a greatly improved A1c and time-in-range, but I’m also not willing to do immunosuppression therapy unless I had absolutely no other choice.
I chose none of these. If I am trading what I do for T1D with immunosuppressive therapies, whatever that entails, I’ll stick with what I know. I have an A1C of 5.7 and I know what I should and shouldn’t do to avoid highs and lows. I don’t like drugs and all if their side effects. I’ll stick with insulin.
Same selection and same reasoning for me. 5.8 A1C, and I’m doing fine with a pump and CGM. None of the listed options sounds attractive enough to go on immunosuppressants for the rest of my life, even if we weren’t living in the age of the COVID pandemic.
I chose eliminating hypoglycemic events.
However, I would not participate in a therapy that makes me take immunosuppression therapies. Could you imagine having a suppressed immune response if you catch Covid 19 or the flu? No, thank you.
Emphasizing “outcome most desirable for you,” I must state “eliminating severe hypoglycemic events.” The time in range and Hba1c parameters, while all desirable in the long run, are not immediately lethal. The immediacy and certainty of death rather gets my attention.
What exactly is islet cell replacement therapy? How can a person make a choice when we do not know what that choice is?
Being able to eat without insulin calculation/dosing is a close 2nd to a1c.
What I would most like is freedom from complications. My time in range and other measurements are good, probably because managing my dosages has become 2nd nature to me after 60 years. However, I would not be surprised to find that other components of a functioning pancreas may be important in overall health (C-peptide, amylin?)
If I still have to take insulin at all I would not opt for any therapy that requires immunosupressants. Taking those brings on their own problems so unless the trade off it freedom from taking any external insulin it’s not worth it.
None of the above if it involves using immune suppression drugs. I’m fortunate enough that I can maintain an average of 85% TIR with a Dexcom sensor and a tandem pump. I’d rather put up with a few lows than with the immunosuppressive drugs.
COVID has shown just how vulnerable you are on immune suppressing therapy.
I would only want the immune suppressant drugs with the islet cell transplant if there was no, and I mean no, diabetes at all. Otherwise, researchers are wasting their time. And since our own auto bodies are continually attacking our islet cells (I assume that also means transplanted cells), immune suppressive treatment should in theory just allow the new islet cells produced by our own bodies to work. Figure out a protected islet cell transplant that will not allow our own bodies to kill it, that’s really where the future treatment will be.
I need a lot more information to answer this. Plus during a pandemic, which may not end soon, being on immunosuppressant drugs could be hazardous.
Already have multiple issues with autoimmune system. Would not want to take meds to suppress it.
Managing Type I diabetes simply isn’t difficult enough to make me willing to accept living on immunosuppressants. I would think Covid-19 would have made more people share this view.
I would check all of the above because they all sound GOOD. However taking immunosuppressant drugs is BAD. How about taking your own islet cells in the therapy?????
I totally agree with you, I like all the above except for taking the immunosuppression drugs. No thank you!
Connie, our islet cells have been killed and no longer work, so there aren’t any to use from our own bodies. 😬
I wish more were known about LADA, how it differs from T1 and T2, what it means to still produce random amounts of insulin at random times. I would like to not suddenly go low while grocery shopping, or sweeping, or vacuuming. I would like to sleep without having to get up and fix a low or a high that randomly appears unrelated to how much insulin I took, what I ate or did. I would not like if the transplant made things harder to manage.
I would not choose any of the options if it meant I had to be on immunosuppressive drugs.
Any transplant requires (at this time) immunosuppression therapy, as I understand it. I have a friend who had the islet cell transplant several years ago. She was off insulin for a length of time and then needed another transplant. Due to other problems she had to stop the treatment to stop her body from rejecting the transplant and returned to multiple injections per day. I applied to the same program in 2010 but I had antibodies that prevented me from getting the transplant.
None of the above, thank you. My TIR is already 90% or better with Tandem’s Control IQ. I’m not interested adding immunosuppression drugs to the list of prescriptions I already take.
First let me say that I would never ever be interested in a method of controlling my diabetes that required taking immunosuppressant drugs. My A1c is currently 5.8. I’m on a pump and I’m not that concerned about low blood sugar, other than my CHM waking me up at night. But, I absolutely would rather not have to figure out how much insulin to bolus every single time I put something in my mouth to eat. 😬
I’d rather wait for the science that will allow the creation of replacement islet cells from my own cells, and never take immunosuppression therapies. After what we have all just been living through over the past year and a half as a great example, where those who are immunosuppressed were at much greater risk of severe illness, I wouldn’t voluntarily put myself in that position. (I’d love to never have to manage insulin, or my BG levels, for the rest of my life, but I wouldn’t want to live with the additional risk of being immunosuppressed.)
I answered A1c < 6, but I agree with all those who said they wouldn't take immunosuppresive drugs to accomplish it.
Me too. I misread the question! I don’t feel immunosuppression is the answer when technology is presently good, but can become great!
Immunosuppression therapy isn’t a plus for if I’m getting islet cell therapy. Feels like your dancing with the devil for a few benefits without getting meaningful relief
I agree with Kevin !! I have lived with T1D for 68 years since age 21 years and no really problems, so why risk other troubles !!!
I chose Eliminating severe hypoglycemic events as I am concerned with my cognitive functions as I age.
Thinking about it harder, I should have chosen being able to eat my meals without planning dosing because if this were possible I assume all the others would fall into place.
I have hope for T1D, especially those newly diagnosed, as I watch clinical trials and pubmed!
My biggest struggle is food. I take so much insulin it really is hard to get it right and not over do it. As well, slow digesting food makes for unexpected highs later. Best solution is low carb to help manage. But, to not have to worry about omitting carbs all the time would be wonderful.
None of these is worth immunosuppression.
Agreed. I’m not interested in trading one problem for another.
I agree with so many others – becoming immunosuppressed would, in my view, not offset any advantages that could be offered. With CGM and pump therapy, T1D has been very manageable for me, at least.
If reducing insulin to one injection a day with smart insulin, it would also accomplish the other items. The best treatment is glucose responsive insulin since it would greatly reduce/eliminate the effort of constant monitoring and adjusting insulin while preventing lows and highs. While some people are successful with pump/cgm combinations, who wants to have these things hooked to their body for life? Also, these devices are expensive and unreliable and require frequent monitoring/maintenance.
I think we would need to see elimination of the side effects of diabetes to endure immunosuppression. Cardiovascular disease, nephrotoxicity, neurotoxicity, retinopathy and blindness would all have to go away.
If it involves immune suppression, it isn’t a solution. I wouldn’t use it. I have seen far too many people I cared about die from minor infections while on immune suppressants.