No way I would use IS drugs in order to have islets. Having my immune system messed up isn’t my idea of how to live life. I’ll stick to insulin for now.
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In 2010, when I learned that alpha cells convert to beta cells of their own accord, I began a long and winding journey to figure out how to recalibrate my immune system and prevent the attack of new beta cells.
I am still on that journey, and/but would happily accept a procedure that didn’t include IS drugs. Too me, it’s just cra-cra to further mess with my already compromised immune system (as @Terry4 says)
I did find an interesting podcast on the topic of CRISPR while looking for further information on this procedure.
It is an amazing procedure and offers hope to us with type 1. I think two of the issues not addressed with regard to immune suppressants are the cost and long term effectiveness.
I take several versions of immuno suppressants as a result of RA. Nothing can express my deep appreciation for what these drugs do to make my life better. But the first issue is cost. At present the immuno suppressant regime I use has a pre insurance markdown cost of around $120,000 per year. Insurance pays about 60K and I pay a large but, in comparison, minor part of the cost. Yes, that is a lot of money, but as I said I am very appreciative.
The second part is that the immuno suppressants for my disease are not yet even close to foolproof. Over the course of the last 15 years I have been on a total of 7 immuno suppressants, with 5 of those being the most expensive biologic agents (those like contemplated in this study).
If that sounds like a lot, it is. Of course, as immuno suppressants have gotten more sophisticated (targeted) the costs have gone up. If you think about these drugs, with different rates of effectiveness. Think of it this way, if we need to suppress the entire autoimmune system, then the drugs cost much less, and it is needed to suppress a particular part of the immuno system then the cost goes up at a great rate. One of the issues here is this will most likely be a highly targeted immuno suppressant. Though I cannot state that to be a fact based only on what I am reading here.
Now, having said all that, There is something very promising here. What may not be ready for prime time today is certainly a path, and for that we have to thrilled.
rick
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Thanks for some real world perspective, @Rphil2.
@DrBB, I hear you on the press getting excited and then going away, but … the press release was directly from DRI.
In any event, I am patiently, but eagerly awaiting the next step that seems to coming on many different fronts.
I have been on an immunosuppressant drug called azathioprine for about 10 years. I take it for ulcerative colitis, but it’s also commonly prescribed to kidney transplant patients and people with a variety of other autoimmune conditions. After years of debilitating colitis flare-ups and lots of different drugs, this one has kept me flare-up free the entire time I’ve been on it, with ZERO side effects. Certainly my 10 years of experience don’t guarantee sunshine at 20 years, but so far there’s no sign at all that the drug is doing anything other than what it’s intended to do.
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I think what Emily says is also 100% accurate. Lets take methotrexate, an immuno suppressant that most of us with RA take (or some variant of it). It is the first line of defense for RA and almost all patients are placed on it immediately at diagnosis. It is a generic drug and it costs about $20 per month. It works well, it is about 20 years old. Today for RA it remains the first drug prescribed but it is not the last.
20 years ago it was the miracle drug and it originated in cancer research (Many RA drugs do). After about 6 months the current gold standard is to transition a person to a regular biologic immuno suppressant. Why might you ask? Well researchers now know that RA is an evolving issue. For some people about 15% methotrexate is the end all drug. but for about 85% of people the body evolves further to thwart the effect of the suppression of the immune system.
So we ramp it up with a biologic supressant. you see these on TV, Remicaide, Humaria, orencia, i take the grand daddy of the lot Rituxan. I started with a relatively older drug remicaide and it worked well for 5 years. But when it gave out it was over in a flash. Boom I was in need a different drug.
Not everyone will have this and it is difficult to know who will and who will not. While my first one lasted a long time, the second lasted less than a year. This is pretty typical in many forms of Rheum disease. Incidentally that are at least 4 causes of RA, and one might expect a similar understanding to grow with type 1 diabetes. What works for you might not work for me and what works for all of is might not work for all of them.
What is known is that autoimmune diseases (some believe there are over 100) are not a one size fits all. One treatment that is effective for me may not be effective for you and vice versa.
I have great hope for this. I have seen first hand the incredible power of immune suppressants, but I have also seen the many failures. I think we are in a wait and see. Even today 15 years after taking my first biologic department I am still hoping for a great one size fits all. unfortunately this bride is 300 lbs some days and 200 labs others.
best to all,
rick
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As any of you who have read a few my posts may have noticed by now, I generally go an alternative route. Here’s what I do:
In addition to T1, I have Hashimoto’s Thyroiditis. Diagnosed late and at a very severe stage. Antibodies were >3000. I gave up gluten and–after a year–still tested at >2000 so I started using Low Dose Naltrextone.
Here is an article that describes the how LDN works: The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain
As the title indicates, the majority of LDN usage is for chronic pain due it’s anti-inflammatory impact. However, this one line:
“This “opioid rebound” effect could have multiple impacts on health and quality of life, including enhanced endogenous analgesia and repression of critical immune factors…”
In layman terms, the opioid rebound, or surge, will recalibrate the immune system to lesser or greater degrees, depending upon the person. My interest was drawn by the success people with autoimmune conditions effecting the gastro-intestinal tract were having in studies.
So, I convinced my doctor to let me try it, and–after 6 months–my lab tests show antibodies at <100.
Works for me 
IS is too much burden when added to the 50/50 chance of getting off insulin. And then one may self blame when islets rejected. Would a partial insulin production be a problem for dosing decisions? I think so. The Miami study used a cellular scaffold to protect islet cells implanted in the intestine. The studies I’ve received applications for ask one to list glucose numbers at which many low BG symptoms begin. And a requirement is a heavy hypoglycemia burden such as unaware or frequent severe. People with gasteroproeses would be good if they require frequent glucagon shots but they probably run high to avoid lows, then their aic might disqualify. Anyway it’s not a cure until there is ample supply (not cadaver sourced), ImunoSupressants are not needed, and permanently reverses the symptoms. Maybe we should stick to talking about the bionic pancreas for now.
I agree with your overall post, but I’ve got issues with “bionic pancreases” too. Until there is a super-fast insulin that has a duration measured in minutes instead of hours, and very accurate sensors (without needing calibration and without a 15 minute delay), and cheaper, stable glucagon (although the idea of using glucagon on a regular basis gives me pause), then I don’t believe in the long-held idea that some hardware is going to replace our failed pancreas. Once those obstacles are overcome, insurance covers them, the price is affordable (to both insurance, medicare, and the consumer, for supply costs), THEN we can talk
I see no way that sensors reading ISF can ever become “real-time”. Our bodies aren’t going to mutate such that ISF doesn’t have a glucose-level lag.
Hi, I enjoy reading your response. You have so many good points. Earlier in the thread a theme emerged of healthy scepticism. The hormonal closed loop insulin pump is a reality. It probably won’t improve BG levels for dedicated practitioners of the latest diabetes therapies. It will be for sale in two years. I’ve been hoping that it will improve my health. Afrezza gave me hope and when it finally became available for purchase hope fulfilled. It was so fantastic not spiking after meals. It made a huge difference. It was everything I hoped it would be but my lungs told me to stop taking it. So I limit my eating of carbohydrates and pre-bolus. Pre-bolusing is my weak link at present. So it’s important I remember how bad post pyranidal spikes feel and the energy boost of not spiking. Wouldn’t it be great to turn all the dosing decisions over to a computer on board 24/7 willing to look at my BG every seven minutes without fail. Also there was the hope presented by Invokana. And it changed my blood sugar fluctuations. It lessened them. For the first time I saw my graph on the com level off in non diabetic range after dropping. First time I saw a rise in blood sugar stop rising before completing it’s mountainous course. You mentioned CGM. Do you know how accurate the latest generation is? If you tried and quit on the first generation come back to it. It now lives up to its promise. Dexcom g4 is truly remarkable.
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I use Enlites and they are accurate in my arm; not very accurate in the abdominal area (and I’ve tried all over–flank, closer to midline, high up, a few inches above beltline, left, and right. none of them worked for weeks like those in my arm.)
Doesn’t the G4 require calibration? If so, remember what I wrote in my previous post. 
I’ve gone several days without a blood test and when I did the Dex g4 was still spot on. I’ve read that non calibrating is being studied. Doesn’t everyone know that the bionic pancreas researchers scientifically studied available options for CGM and results are clear and they’re using dexcom. I was at an insulin pumpers meeting and I refused to believe that Medtronic had an inferior product. I wasted a lot of time using it. The Dec doesn’t require attention. Just look at the tudiabetes discussion groups. The elite users are frustrated. The dex users are satisfied. OK you say the ISF, interstitial fluids are not current if BG is changing. SO CGMs employ a predictive algorithm. Now obviously a bionic pancreas is impossible with a Medtronic CGM.
What you wrote in your previous post? The impossibility of the bionic goal? No, it does work but they still have to struggle with pre-bolusing. Another thing you said that if you will excuse my blunt manner in the face of your charming demureness sic. And with all best intentions of … Anyway you said glucagon in the system may be undesirable but diabetics have less glucagon in their system than non-D at two occasions, day and night, just kidding, during exercise and late post prandial. There were some reports of nausea when much glucagon was used. But that happens with Symilan and we know that’s a hormone diabetics lack which slows the after meal BG spike.
I’m perfectly satisfied with the Enlite sensors. I would say more, but I don’t want to be negative.
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Ok, I was afraid of that. I wasn’t trying to say that medical device is bad. I was saying, and could have been more succinct, that the bionic pancreas is a reality, in response to a statement of scepticism. One point of scepticism was the unreliability of the CGM. It’s problematical we use CGM to mean several products. I was pointing out the parallel of my experience and a rigorous experiment undertaken to determine best options for bionic pancreas development. The fact that Dexcom is located in my home town is neither here nor there. I’m sorry to hear about the negativity of your unspoken thoughts. Look at the frustrations expressed on the enlite user group. Let’s agree that the Dex and Enlite are different. My statement simply is you may be more sceptical about the bionic pancreas if you believe all CGMs are equal.
There is no way I would let a bionic pancreas make decisions for my dosing 100% of the time. First of all, it will have to be around more than a year or two for me to even consider getting it. A computer is no replacement for the human brain. It may come close, but right now not for me.
Yes we can, you’re okay I’m okay, keep on building
I’m hoping my next pump is a bihormonal closed loop and I learn how to pre-bolus. Why haven’t I bought sugar surfing yet?
You’ve described being bionic well. The computer rules. But look at abs breaks that make cars not skid if one slams on the brakes. Sure makes it easier to stop fast. … sometimes I’m distracted from my vigil, my focus on where what when and how my blood sugar food exercise stress, sometimes I’m having fun. Diabetes doesn’t like that. D makes it clear that I need to look at my apple watch blood glucose graph every seven minutes. I don’t have one but if I did like D wants me to. Me to? D, you like C. (computer) Don’t you? Can C take the place of me? Please? D, okay, say something, it’s lovely when you’re happy. C looks every seven minutes, C makes decisions about you D. And that’s all C ever thinks about. You’d like that? Then me, C and D will all be happy.
Deep Blue vs Kasparov