Off-Label Use

My endo is heavily involved in research and believes he MAY
prevent me from developing what he calls “Overt Diabetes”. The concern on insulin use is hypoglycemia and weight gain. I was put on Victoza in Feb 2015 and have lost 15 lbs. to date. I wasn’t overweight before (117 5 feet tall). I started with an A!C of 5.9 and fasting over 100. My A1c dropped to 5.1 with normal fasting levels and he just put me on the max dose 3 months ago since my A1C has been steady at 5.5 the last year with normal fasting. He stated that it appears to be working; however my concern is that I am down to 102 and worry I will keep losing weight. He mentioned the next option would be to refer me to a rheumatologist because there are drugs for RA that could help. Has anyone heard of this?

There is no way to “prevent” diabetes. Period.

Maybe my wording was wrong and he is referring to keeping things status quo and not progressing instead ? I’m not sure what RA drug he is referring to but I am concerned it is one that would suppress the immune system.

Progression may be slowed, but it cannot be halted. And I’d put money on the fact that the medication will be an immunosuppressant.

I work in education and would be concerned about that. Also, wouldn’t that make one more susceptible to other major diseases (e.g., cancer)?

In a word, yes.

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And I would add that weight gain is not inevitable on insulin. It often happens (sometimes desirably) but it doesn’t have to if your diet is disciplined. And hypoglycemia risk can be managed. Long term complications, on the other hand . . .

Insulin isn’t for everyone, not everyone needs it. But if it were me, I would be very very leery of immunosupressants, especially for someone who comes into constant contact with kids.

$0.02

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Why not just increase your caloric intake, maybe through adding more healthy fats (olives/olive oil, nuts, avocado, etc) and see if that prevents weight loss? Maybe use a calorie tracker for a little bit and also track your weight to see if you just need more calories before switching off a treatment plan that otherwise seems effective?

the business with RA meds is a misinterpretation of some basic research being done with some medications for RA (my opinion). Here is why. RA meds are Immunosuppressants. The theory is that suppressing the immune system will stop the system from attacking the beta cells in type 1 diabetes. By and large, this has been tried with LADA patients who have active immune attack underway.

There are approximately 10 RA medications on the market. To my knowledge, these have never been shown at this time to show any effect in stemming beta cell destruction. Further, these medications are used to stem the tide of RA using one of three mechanisms.

The most popular are called TNF - alpha inhibitors. According to Everday Health " a study published in the journal Arthritis Care and Research more than 1,500 people with RA, who were given the class of RA drugs had a reduced diabetes risk". However, that risk reduction was in type 2 diabetes.

Some points, to ponder the average cost of administering these medications is between $2,000 and 3,000 per month. The use of these medications is not linear. you may have a reaction to a medication today and the next time it may not work at all. This leaves cause for concern because we only know in hindsight if they will work with RA. Joint damage is cumulative and may take several months before it is obvious. As we know type is often a rapid onset condition.

One possible thought is to use Rituxan as a way to reduce beta cell destruction. There are some issues however. Again no one knows when one starts on this medication if it will work. In no case will rituxan be a restorative medication. If it ever could restore pancreatic beta cells I would have them. I have used Rituxan for almost 3 years now. Another situation is that Rituxan costs on average $30,000 to administer every 6 months at best.

And like all of these medications the minute one stops using them (and often well before) the autoimmune system finds a work around to the agent. Causing the addition of additional medications to help reduce the autoimmune system. Finally, if you look at the potential toxic side effects of this medication it is doubtful the risk-benefit would cause anyone to use it for diabetes.

Finally the other major class of biologic medications used for RA are called Interleukin or JAK inhibitors. There has been some study reported by the ADA in regard to JAK inhibitors. but this work involves the developmentof complications related to high blood sugar. JAK inhibitors are new int he RA marketplace and they may (no evidence yet) assit with the suppression of the destruction of BETA cells in the pancreas. It is doubtful (but not impossibile) that such research is underway. What is not in dispute is that Jak inhibitors by themselves will not restore insulin production. Even if JAK inhibitors do halt the immune attack, it is unlikely they will restore insulin production unless a second more complicated process is undertaken.

Let us know if you hear something differently. I for one will give up Rituxan in a second to get back insulin production.

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Now after that long explanation of RA medications. Let me add this. My endocrinologist is the one who discovered I had RA. He referred me to a Rheumatologist for consultation. It was the most important action a person did to help me start to feel better. The rheumatologist explained RA and got me headed on a path to help alleviate the pain and suffering I was experiencing. So if the referral is about suspected RA, yes you should go. Sooner than later.

honestly if you want to play with funny stuff, look at glucagon

I do have arthritis in the fingers of both hands and my left knee. I was recently tested for RA, but the results were negative at this time, so I was told it is osteoarthritis. I’m assuming the drug may be tocilizumab (Actemra®). https://www.benaroyaresearch.org/our-research/diabetes-clinical-research/find-study/extend-study

Actmera is a JAK 6 inhibitor. That decreases inflammation in the body. The RA experience is that it either works very well or not at all. It might be used to stop the destruction of pancreatic beta cells, but it is not restorative. Meaning that which has already been lost will be gone. The research is to preserve the insulin producing cells.

Actemra is given either prescribed as monthly infusions or every two weeks as an injection. I used the infusion for 17 months. It did not produce results in my case. But others have found it helpful. I know one lady who has used it for RA for 6 years.

Again stopping the medication stops the effect. So if it works it is a lifelong (or until it fails commitment). Actemra when I used it as an infusion was approximately $2,000.00 per month plus infusion costs (nurse, center other medications etc.). There is nothing wrong with basic research and I hope it works. But, it is important to understand it is only good so long as the treatment is continued.

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