#: 182998 S1/General Information 71 7 22-Oct-93 23:43:17 Sb: ACE inhibitors Fm: Kalani Baker 72724,125 To: All I work in a setting where the PWDs seem to have A LOT of serious kidney disease. We're talking transplants and dialysis city. Quality of life is the pits since my folks have to travel 1 1/2 hours to the nearest dialysis center. I'm very interested in preventing nephropathy. I'm aware of the research on the use of ACE inhibitors preventing progression of nephropathy, even if these are given to people that do not have high blood pressure. I understand that the reason new tests for detecting microalbumin in urine are valuable is because they detect nephropathy long before it shows up as protein in the urine. My questions then are these: 1. What tests for albuminuria are out there, and what are the diabetic "consumer reports" on them. 2. Is there anything else that can be done besides ACE inhibitors to prevent nephropathy in PWDs? 3. What's the consensus on protein restriction? 4. Any PWD out there who are on ACE inhibitors and were put on these even though their Blood Pressure was normal? What is your experience? Thanks muchly. Look forward to replies! #: 183008 S1/General Information 71 7 23-Oct-93 00:52:35 Sb: #182998-ACE inhibitors Fm: SYSOP-Dave Groves 76703,4223 To: Kalani Baker 72724,125 Kalani, The DCCT and the Karolinska study from Sweden (both in lib 10 here) seem to confirm that "tight" glycemic control is a major nephropathy risk reducer for Type I diabetes. It is only about a 33% reduction overall, and I find the Swedish study most impressive in that it starts with poorly controlled, long-term diabetics and still shows major improvement through lower A1c. The Swedish study and the DCCT do not, of course, reflect "Native American" genetics nor any Type II situations where it is probable that other factors are contributors to your high incidence of nephropathy, beyond the history of poor glycemic control that I would expect many of your patients carry. I guess that means that the good news is that what you are doing to help them control their diabetes will, in some cases, help to stop or even reverse the complicaton. The bad news is that you will likely need something like a Tolrestat or another ACE inhibitor in many cases if even that will help. I have no answers on tests for microabumin though I am sure you will get some. What I have read suggests the Protein restrictions are useful only in after there exists frank renal involvement, evidenced by reduced creatinine clearance and elevated 24 hour microalbumin. I believe Bruce MacDougall has been on ACE inhibitors with normotensive BP. #: 183265 S1/General Information 71 7 23-Oct-93 19:43:19 Sb: #183008-ACE inhibitors Fm: Kalani Baker 72724,125 To: SYSOP-Dave Groves 76703,4223 Dave, thanks for your reply. I wanted to get back to you after your delightful soliquey, but I'm still learning my way around and haven't figured out how to write a file on my Mac and then copy it into the messages yet. Yes, I've read the DCCT stuff, and that's good news indeed. (despite your general feeling about the DCCT ) I hear from endos that checking for microalbuminuria is a good thing to do since you can catch nepropathy early, but other endos I have talked to say "Why test, you can't do anything about progression of kidney failure anyway, so its a wasted test." I guess that is the biggest question. Then secondarily... What are the interventions that can be done besides ACE inhibitors? Should all diabetics be on ACE inhibitors? There is little question that those with hypertension should be, but what about the normal BP folks? Bruce, what do you have to say about that? Were you evidencing microalbuminuria when you started your ACE? Anyone have any experience using the "spot" albumin/creatinine ratios? How reliable is the test? Better than the 24 hour (my PWDs don't usually like 24 hour tests, generally). Dave, I really appreciated your "story" - will get back to you on that one of these days. You've articulated a lot of what I imagine some of my patients are thinking when they look blankly back at me when I talk to them about their diabetes!! It's truly helpful #: 183273 S1/General Information 71 7 23-Oct-93 20:20:45 Sb: #183265-ACE inhibitors Fm: SYSOP-Dave Groves 76703,4223 To: Kalani Baker 72724,125 Kalani, A 60% reduction in risk IS good news, but when we are compelled to recognize that it comes from a 1000% increase in underlying risk, it is not as good as it sounds. When we observe that it still leaves 2-5x more likely, it gets very sour to me as a diabetic. Nonetheless, it certainly has aplication in what you are dealing with and for all my "negativism" I trust that you can see that I want every diabetic in the world to have every potential source of help available. I am neither an MD nor a researcher in diabetes complications, just a poor lout who has survived it 39 years and but for now save for fairly severe impotence and neuropathy, dental problems and edema, is in "great" shape. I am not being facetious in my statement. What non-diabetics would consider fates worse than death, have become minor "bothers" to me. I still have my kidneys working A+, I still have my eyesight, AND I am still, obviously, very much alive. None of the kids diagnosed with me are here to say that. I wish I could give a formula. Tom Beatson who just celebrated his 50th year on insulin may concur. We didn't even have the tools 15 years ago and our "luck" is fantastic. When we consider that in the time that the DCCT was done, neither the ADA nor the JDF was able to raise and spend $100mm on diabetes research, the expenditure of $176 to $300mm on DCCT seems out of whack, at least to me. I may be wrong. That diabetes costs $92 BILLION per year and only gets this trivial sum even for this type of research sickens me. I would disagree with the Endos who say, "so what, we cannot do anything about the presence of microalbumin" and look to the nephrologists who are able to do things. One important thing that I do read is that diabetic nephropathy is, at least modestly, reversible with better glycemic control, and I suspect that your particular clients have not had the luxurious medical attention that I have had. I don't know the A1cs on the 200+ folks that you are dealing with, but even if ALL were Type 2, I will bet you a lobster dinner that if you can drop their A1cs by 1-2 points from current level, you will be entitled to a tribal totem JUST for the reduction in nephropathy! Every pancreatic Tx I have met (all 4 of them) has commented on the fact that in the new kidney, their MDs are commenting on the amazing benefit of normo-glycemia. In the kidney only Tx's A1c over about 10 shows immediate recidivism, even with ACE inhibitors, but we have so few that we cannot say those magical words p <= 0.05. Since you are supplies short, manpower short, test short and time short, I would suggest that you use the microalbuminuria in a reverse triage and focus on reducing A1c in THOSE patients, even at the "expense" of some of your more "compliant" patients. Just a thought, and I look forward to hearing responses. I cannot help you on the other issues since I am not Bruce and since my creatinine and microalbumins (in spite of some heavy edema) seem basically normal as of 2 years ago. #: 183290 S1/General Information 71 7 23-Oct-93 22:16:30 Sb: #183273-ACE inhibitors Fm: Kalani Baker 72724,125 To: SYSOP-Dave Groves 76703,4223 Points well taken about the $$ spent on DCCT, Dave. But as a poor smuck just doing my best with what I've got, and having no influence on the politics of DM, I AM glad to tell my patients - this offers some hope. Haven't come to the point of having to reverse triage yet, a pill I would personally find difficult to swallow, (maybe why I work in Indian Health Service instead of private practice! )! Who's to make a judgement about who is ready to work on glycemic control! Not me!! I've misplaced my GOD degree. As far as meters, I'm working real hard on that one... You are a "lucky" one, Dave. Both with the eyesight and also the kidneys. I'm glad you're still kicking #: 183317 S1/General Information 71 7 23-Oct-93 23:03:42 Sb: #183290-ACE inhibitors Fm: SYSOP-Dave Groves 76703,4223 To: Kalani Baker 72724,125 Thanks, Kalani, believe me, I treasure my luck. I truly wish that the benefits of tight control were so obvious that the prior 4 experiments to prove it HAD proved it. Frankly, if the benefits of tight control took this massive a study to prove, they are not of the greatest value that I can see, given areas in which the $$ could have been spent. The fact that the study covers only White Yuppie New Type 1 diabetes doesn't make me any more sanguine, BUT at least we have something that implies major value to your patients and as I said above, I believe that it may well be your best tool! (Apparently only the heirarchy of ADA and NIDDK has any say on how money is spent and I hope to change that). No one can make a judgement on who is ready to work on tight control. We don't even know, first hand, that it will benefit Type 2 Native Americans. We can use our best logical tools and assume that it is better than alternatives (cf ignoring the situation). I am NOT God too. What I was trying, inartfully I fear, to say is that the "staged" program you are using is likely serving more good than you have noticed since it will improve whatever life your patients currently have been living and to the extent that it lowers their A1cs, it will have ancillary benefit on their long term prognosis! I am not there, on scene, with your patients. I am not an MD. All that I can "give" you is what I am giving, my thoughts on how things have impacted me over the past 39 years. That's been a fortuitous and lucky period. If you can help them to get better control of their A1cs, you have helped them to avoid complications and to have a longer, more healthy life. I have more intellectual curiosity about how you do that than you can imagine! Watching your and their efforts, seeing what works and doesn't, will ultimately help us all! Kalani, this forum is here to try to help. Sometimes we can, often we cannot, but trust me in this, I would personally hope that I am 100% wrong on 99% of my positons, if being wrong on one would save a single diabetic and not damage any. My mind is far from "made up" on thousands of issues relating to diabetes, but I will and do argue my current belief sets ardently. That's my nature and there is no changing that. OTOH, I count the day lost that I don't learn something new that alters my belief sets! #: 183349 S1/General Information 71 7 24-Oct-93 00:41:28 Sb: #183317-ACE inhibitors Fm: Kalani Baker 72724,125 To: SYSOP-Dave Groves 76703,4223 Eloquently put, Dave ! Well, I'm on the steep part of the learning curve as far as diabetes is concerned, and can use all the help I can get...truly 6 months ago I felt very discouraged and black about what we had to offer PWDs. I did not believe that folks would really test 4 times a day, especially "my" folks, and I was skeptical of the Staged Diabetic Program, to say the least. IDC people said, "put it to the patients - let them see what they want to do". Just the step of giving people BG goals and asking them what they wished to do was so powerful. I was amazed, as I have said before - those that had been out of control for years willingly would work on this - AND GET RESULTS! One of the tenets of the Staged Diabetic Program is not to keep doing something that isn't working, move along the "roadmap" to something that will work. My PWDs have taught me a lot. It's not all roses of course. That old curse, alcohol, has me and many PWDs jimmyed up. One of my patients, who has severe neuropathy, a bad drinking problem, and now gangrene of his left forefoot, walked out of the hospital AMA after I struggled to get him an admit on Friday. He didn't want an IV. Ah well... #: 900000 S1/Outbox (Recon) 7!!7 24-Oct-93 04:33:00 Sb: #183349-ACE inhibitors Fm: SYSOP-David Groves 76703,4223 To: Kalani Baker 72724,125 Kalani, Bless your efforts. Just as it is true that each of your patients can only do what he or she can do each day to make each day work, so it is with you. All that you can do is what you are doing. I personally cheer you for that!