In the last year I have learned an awful lot about D. I learned what basal and bolus insulin was all about. I learned what a Dexcom was. I learned how to count carbs and lost some weight. I participated in the Big Blue Test and am continuing that this year. An important thing I learned both here and on another DOC is the importance of participation in the community. Whether it's just posting occasionally here or becoming an advocate or member of the care staff who greet the newcomers or planning a meet up. It all adds to the feeling of not being alone as a PWD or someone who takes care of a PWD.
Another way to participate in the community is to volunteer for a clinical trial. I signed up with the JDRF to receive a listing of trials for which I was eligible every couple of weeks. I had been looking at a bunch of different volunteer opportunities from the Beacon Hill trial of the bionic pancreas to a new non-invasive way to measure blood sugar. One trial which intrigued me involves C peptide replacement as a treatment for peripheral diabetic neuropathy (PDN). The trial can be found here
C-peptide is a naturally-occurring peptide that is formed when insulin is cleaved from pro-insulin. In healthy individuals, C-peptide and insulin are co-secreted by the beta cells in the pancreas. Type 1 diabetes is characterized by the body's inability to produce pro-insulin and consequently both insulin and C-peptide. Because C-peptide deficiency has only recently been implicated in vascular microcirculation dysfunction, treatment today for type 1 diabetes is limited to intensive insulin therapy and frequent blood glucose monitoring to optimize glycemic control.
For those of us long timers the original pork and beef insulin contained C peptide. The newer synthetic analog insulins while making D easier to control does not contain any C peptide.
So I signed up for the trial and completed the 2 screening visits which included some nerve conduction velocity testing. And while it is asymptomatic, I do in fact have some measureable neuropathy and I was accepted in to the trial. So for the next year every Monday I will take 30 units of something labeled "CBX129801 (Ersatta) or Placebo. I took my first dose last Monday. I don't feel anything yet :) but I will keep updating as time goes on. My only complaint so far is the 29 gauge needle they expect me to use. That's not happening for sure, I have already changed that part of the protocol with the doctors' approval.

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Tags: PWD, help, including, one, to, way, yourself

Comment by rick (aka: #blankieboy) on November 10, 2013 at 7:47pm

Clare, those are killer needles, I dont blame you for asking the doctor to change the protocols. thank you for doing the trail, it is very important to all of us that clinical trails take place. I believe we have the same responsibility to our children that our parents had for us. I wear a pump today because of others. I am alive today because of the sacrifice of others.

Thank you for making us all proud.


Comment by Brunetta on November 16, 2013 at 5:50am

I wish I could take part I this one Clare. Thank you so much for your participation/ I think that one of the many reasons that a LOT of us old-timers have limited complications, is the c-peptide we got in our insulins.. I do have mild-moderate neuropathy in my feet and calves. No numbness.;just tingly sometimes painful feelings. Stable blood sugars for longer periods of time seem to alleviate the feelings somewhat significantly, but I still know the tinglies are there. Wish I lived closed to a state where the trial is boring offered. I will just stay with the Faustman study. Due to come to Boston again in April. Maybe we can see each other then.

God bless,

Comment by Clare on November 16, 2013 at 6:44am

That would be great Brunetta. I have given blood at the Faustman lab and have told them I would be willing to give more if they should feel the need. This is the first clinical trial I have participated in. It probably won't be the last. Let me know when you're planning on going to Faustman's lab and maybe we can grab a bite to eat or something.


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