Most of you know, I volunteer for many clinical trials. I am fascinated by them, love being in the know on new stuff coming and I get to talk with a lot of people with cool ideas about diabetes and it’s treatment.
I have done, drug studies, pump studies, CGM studies, infusion set studies, mental health studies, stem cell studies. Let’s just say a lot. Some have had great outcomes, some not so great. Some drugs make it and some don’t. Some equipment makes it and some don’t. That is why they do these studies.
In all the years I have been doing these, I have only dropped out once.
These are the reports from my 55 days with my “dream pump” study. Things did not go like I had hoped. It wasn’t pretty and very frustrating because I so wanted it to work for me!
These next reports were the wash out between studies.
These last ones are the current study that I am finishing up next week. A drug with Farxiga & a new drug called REMD. One injection a week with a daily pill. Amazing what an injection can do for you!
This drug is still in clinical trial and this study was not about the drug but dealing with DKA reduction. But if I can latch on to this next level of drug trial, I will be signing up!
Trials are what is keeping my hope alive that we might find the answer someday. I do believe it will happen and my belief is that it will be stem cells, but I also believe it will be a long way off. But as I start to age out of some of these studies, I will continue to do what I can for a better tomorrow for all of us!
That’s exactly how I feel about research. I’m always so jealous of you! It’s the one bad thing I’ve discovered about moving out into the rural boonies… Absolutely no science/research going on out here. I keep hoping Covid/telehealth will inspire more remote opportunities.
Thanks for keeping us in the loop. I knew there was another push coming up to get SGLT2 inhibitors approved for Type 1s (they are in Canada and other nations, but not in the US because of the rare occurrence of euglycemic DKA), but didn’t know there were already trials running. I’m real curious about what the REMD add-on does and how it prevents DKA.
I tried a different one, Jardiance, and discovered I’m horribly allergic to it. Skipped over the other SGLT2s, and am now trying a GLP-1 agonist (Trulicity) instead. Loving it, for the most part. Helped me lower my TDD significantly, drop 12 lbs, and my post-prandials have been the best I’ve ever seen. It’s a little hard on the gut, though, and really painful. Your pretty graph has me wondering about Farixia, now. I’ve been pretty much experimenting on myself. Thankfully I have a doctor who will write whatever scripts I ask for and is receptive to my experimentation add long as I understand the risks!
I went Victoza instead of a SGLT2 because of my fear of yeast infections and possible bladder infections. my fear if how bad those were for me in my early years. I had them a lot but that was probably because the blood sugar control was not there. So I went Victoza. I loved the appetite suppression which lead to me losing quite a bit of weight over the first few years. I also took less insulin which also helps with the not feeding the low problems many of us have because we take more insulin than we need. That said, my problem is whenever I start a new study, I have to come off it.
This new study, I started thinking maybe a pill a day is ok. I haven’t had any infection issues like I thought I would have. I just need to drink a lot more water which is not a bad thing but while I always have a glass of water in front of me, i am drinking a lot more. My big problem has been in the second half of the study. One of the concerns with Farxiga is DKA issues. And as with all things me, everything is small but noticeable. is simple change on basal rates from .355 to .35 makes a difference. Most times just 3 grams of carbs is all I need. Correction factor is 1:100 to 1:110. Small things make a big difference. And the first week into this second phase I was having DKA symptoms with good blood sugars. It was the labored breathing, dry mouth, peeing and queasy stomach. Just like going DKA. But my ketones never got above .9 But I was sure feeling it. So I had to eat every 2 to 3 hours with insulin for the snack. Not the best way to lose weight when you have to snack with insulin. But this is what trials might involve. So ketones never got very high, i was feeling it. So maybe these drugs are not for me. But I might start thinking about a weekly injection vs my daily injection set up right now.
My outcome to this drug is not the usual and I do remember when my doctor and I talked about the different type 2 drugs we could try, he addressed the DKA issue. He said there were some of his patients that he would not recommend it due to the buy in needed to manage it. He said it wasn’t a concern with me because I watch and review my treatment plan. But now with how bad I feel with such low ketone numbers, it probably won’t be in the mix, especially with how I would like to get back to the losing some weight. Not a lot, maybe 5 or 6 pounds.
Not saying this is not a good fit for you to try. Nothing wrong with giving it a try. I remember when we talked about Victoza, I got free samples for almost a month from my endo when we first started. I didn’t want to get a 3 month supply if it wasn’t going to work. So maybe you could get some samples to give it a try! Good luck with your experiment!
And yes I will continue these studies as long as I can and am hoping to get into the final phase of this REMD-477 (volagidemab which is a glucagon receptor antagonist). Keep an eye on this one!
I also was on an Exubera trial for +/-4 years in the early 2000’s before they shut it down. It actually worked great for me - I used it while enjoying frequent distance running (up to marathon length). I did the regular lung function tests and only one of the battery ever showed a slight decline. Doctors were perplexed because they knew of my running and large lung capacity. I had no awareness.
Two other trials came later for new injected insulin products by Lilly & Lexicon. Good experiences.
