I was one of 36 people selected to participate in the Canadian Edmonton Protocol at the University of Minnesota. I received two sets of islet (beta cell) transplants. I was insulin free for one year and that was wonderful. I was required to take immune suppressants for five years to prevent rejection. The latter have several side effects many of which can be quite severe. In my case, I had severe, persistent mouth ulcers that made my new non-diabetic diet far less enjoyable than it might have been. However, midstream my immune suppressant regime was changed and for three years I had no major mouth ulcers. After the one-year honeymoon of no insulin, I was required to take one daily insulin injection of Lantus and maintained normal blood sugars. From 2003-2008 I had NO hypoglycemic events. That was the best part of this treatment. I never worried about having hypoglycemia no matter what I did. My islets apparently died and I returned to full-fledged Type I DM in 2008. I would love to try the Islet Sheets and hope they will be available for humans shortly.
That sounds wonderful and I hope it becomes available to everyone. I can identify with the side effects of immunosuppressants, as I received a renal transplant in January and am on the list currently for a pancreas. I am taking Prografa and Myfortic for rejection. I take an antibiotic and an antiviral for bacterial and viral infections and although I didn’t need it after the first month (did not experience mouth ulcers) was prescribed Nystatin swish/swallow to prevent ulcers/thrush. Were you given preventative treatments as well as the immunosuppresants?
I can’t imagine how nice it was to run normal blood sugars. Hope I will experience it someday.
Yes, I was put on many “preventative” treatments such as the ones you mentioned. My doc was real big on "naturapathic medicine " (I think that is what it is called) so I took lots of different vitamins and minerals. My local pharmacy that compounds medications was finally able to come up with a medicine that helped with the mouth ulcers. The people in the research team were no help at all on that problem. They recommended a horrible medicine that burned the ulcers in my mouth so the treatment was more painful than the ulcers. I hope you do well with your transplants. It is a big step that requires lots of care.
I have heard somewhere that no islet cell transplants last longer than 5-10 years because the autoimmune process that caused type 1 in the first places comes back and kills them off again. Anyone know if there’s someone who has had transplant and had it last 10+ years (or have they even been doing them that long)?
Out of curiosity, do you think the benefits of the transplant are worth the side effects of the drugs to suppress your immune system? Since I was diagnosed somewhat recently, most of my life, I never gave insulin and carbohydrates a second thought. Now these things are a huge part of my life, but I’m not sure if I would trade diabetes for another set of problems.
I’m just wondering what your take on this is?
Great question Steven! I was diagnosed 5 years ago, and at first I was ready to try anything just to not be diabetic anymore. Now that I’ve lived with it for five years, and i see all the novel therapies and treatments that are being looked at that DON’T require immune suppression - I’m glad I waited before jumping on something that requires all those other meds. Insulin is not, of course, a cure - but it makes life tolerable until something better comes along. I have my fingers crossed for stem cells too, but hope that it can just be in the form of a therapy that doesn’t require the anti-rejection meds… - R
Islet transplants can last 5-10 years. I know of a few who are about 10 years out and several who are over 3 now. I am at 22 months and am doing well. The immunosuppressants do have some side effects, but are not as difficult to manage as the side effects of insulin. Right now, I have the best of both worlds, no insulin and no side effects. To hear from other islet cell recipients go the the facebook page called Islet Cell Transplant Recipients. Its a great site to learn first hand what its really like.
Thanks Kathy I will check out the page. I had some gastrointestinal side effects initially after transplant that have totally gone away with a dose adjustment. My renal transplant obviously was not by “choice” but prior to my ckd, I had considered islet cell transplantation and often think if I had, I might not have progressed to have any kidney disease at all. If I’d known then what I know now, I definitely would have “jumped” at the chance for islet cell transplantation.
Congratulations on your 22 months. Do you celebrate your anniversary?
If all goes well the future will be either encapsulation (LCT) or islet sheets for transplantation. Both proceedures will not require any anti rejection drugs. I doubt either proceedure will last more then a few years but its still a hell of alot better then the minute to minute hell we live with today.
me too…
I do celebrate both the anniversaries of my transplant and the date that I got completely off of insulin which is 2 months later. I agree about LTC. The pig islet cells will be more plentiful and the encapsulation will not require immunosuppression. They might not last as long, but the procedure to insert them is not too intense, so boosters would not be too horrible.
yes, I thought it was worth it. I was so happy to be free of hypoglycemic unawareness because it freed up my life considerably. I may have had more side effects from IMo’s than some other people.
What are the Islet sheets? Are you refering to LCT’s porcine islet transplants that are encapsulated so no need of immunosuppressants? Can you get another islet transplant once the first one stops working (which they know they will eventually). Sounds like a good therapy. They should replace the islets when they wear out or what is the point?
other than the mouth ulcers have you experianced any longer lasting side effects i.e. loss in bone density?
Friends! I have just met directly with the scientists and producers of the islet sheets! They are based out of SF (where I live) and much of the research is being done at UC Irvine also.
The Islet Sheets are a small polymer sheet that is derived from sea kelp, processed and made into a semipermeable membrane. The sheets are the size of a business card and they allow sugar and nutrients in to keep the islets alive, and insulin out to keep blood glucose in control. They DO NOT allow immune cells in that can cause the destruction of the islets either by autoimmune attack or by immune rejection…Six sheets implanted (and yes, someone who’s had a previous transplant should be able to do this too), is approximately what it would take…
To me, this is the best solution possible. They are about to enter large animal trials (the rat studies are phenomenal). BUT, they need funding. They are not yet getting much support from the JDRF and I think that we, as patients, can help. Truly, this to me, is the best solution. Islets and no immune suppressants is the ideal solution. Taking immune suppressants and trading one list of problems for another is not optimal in my opinion.
This may NOT work, but it’s at least worth trying. The owner of Cerco is Type 1 himself…
I’m thinking of starting some fund-raising. They need $250k to get through large animal studies and then into human studies. If we can get to human studies, as soon as possible, this cure could be available within 5 years. If they get the funding, they can be in large animal studies by the end of this year.
Anyone game to join me in fund-raising? Seriously, we would need 2500 people to give $10. Or, 250 people to give $100. What do you guys think?
Rachel
I think that the islet sheets are a great idea. I like the idea that they are replaceable when they wear out. I still haven’t seen how they are worn/inserted. I’m hoping to read soon that the JDRF is sponsoring the research.
Would be great if we encouraged JDRF to do this.
Any thoughts about raising some money ourselves? JDRF could take months or even years before they give any meaningful funds. Recently, they gave to the LCT people in australia, but not much.