i’m T1D (over 50 years) and 30 years on insulin pump. a recent cardiac angiograph showed some calcium deposits but not enough to earn a stent. cardiologist wants my cholesterol levels lowered so he doubled my lipitor, added a low-dose aspirin and Zetia, then (oddly enough) wants me to start taking daily injections of Victoza. he says the victoza will help lower cholesterol and lower my insulin requirements (bringing down my A1c). also mentioned weight loss. i am 165lbs
hey i thought this stuff was for type twos?!?!
i am not overly excited about daily injections (takes me back to the old days) which i don’t need to revisit…
any type Ones out there using Victoza alongside their insulin?
1 Like
Some Type 1’s do quite well with some of the type 2 drugs. And I don’t know if Victoza is used by any type 1’s. And I also need to preface my statement with the fact that I used it when I was misdiagnosed as a type 2 and obviously still in my honeymoon phase as a type 1 and not on insulin yet. A lot of any kind of drugs make me sick or I am allergic too them and every type 2 drug they tried on my at the time made me sick. A big part of the problem was I probably needed insulin desperately. But I truly believe Victoza almost killed me. When I took the first shot, and it was a fraction of the dose I was supposed to take, I got extremely nauseated, although I didn’t actually vomit. My sugars stayed around 250 and at the time I knew nothing about DKA. As time went on after I took it, it ended up getting pretty serious, I completely lost energy, I didn’t even have the strength to sit up. I thought about yelling for my husband to call 911, he was oblivious and downstairs, but I didn’t even feel like I had the strength to yell for him or talk to 911, emergency people or to be transported. That is really stupid of course but that is how bad and out of it I got. Luckily after about 4-8 hours of that?? I started to feel better.
I’m not sure what went wrong,I was struggling at the time with high blood sugars and drugs weren’t working hardly at all and they were making me sick. Luckily I was at least put on Lantus after that. But I had a horrible experience with Victoza. I would suggest if you are going to consider it, talk to an endo at least who might be more familiar with drugs that are safe with type 1’s. So many doctors are clueless about type 1’s and they see lots of type 2’s and think it’s much the same.
There’s no reason one can’t have both type 1 and type 2. Type 2 is highly complex and varied, far more so than the simple name implies. I read not long ago that over 100 gene loci have been identified as relevant to type 2, which together account for only 10% of the genetic component of type 2. It’s a disease of the entire metabolism, and clearly the factors can combine in many ways.
That said, liraglutide (Victoza) is considered a second-line therapy. If the doc wants to see if you are developing some small component of type 2, then I would ask why not try the first line therapy (metformin), or some other oral drug since you dislike injections.
In the early 1970s, I took phenformin (predecessor of metformin) for a few years. Subjectively, I thought it helped – at the time I knew very little about types of diabetes. But when it was pulled from the market, I didn’t replace it, and didn’t notice any change. In later years, I’ve wondered the same as what Marie20 mentions, whether the prescriber understood the difference. I too would run it by an endo, who will certainly be watching your cardiac risk factors very closely.
1 Like
I have been using Victoza since I think 2016. I asked about it looking for help with post meal spikes, lower insulin levels and maybe losing a few pounds. I thankfully don’t have heart issues but major family history which was another reason my doctor thought it would be a good idea.
I started slow to reduce side effects. It checked all the boxes I needed. Lost a few pounds, lower my insulin levels and meal spikes are hit or miss depending on my attention to timing. But I have had no problems with it. Many of these drugs are now being used with type 1’s to help with complications or helping stop them. Heart and kidneys are big winners with some of these type 2 drugs. Glad to see more doctors going outside “usual” type 1 treatment. But reality is there is no “usual” treatment for anyone with type 1.
Good luck and hope it helps if you decide to try it or another type drug.
4 Likes
Did you ask why Victoza? It wouldn’t be my first choice from that drug class. It’s an unpopular, older medication, and better variants have since come along. But maybe the doctor has seen better outcomes in practice, or something else I don’t know about? It’s the same type of medication as Trulicity and Ozempic, except you have to inject it 7 times more frequently. Works exactly the same as Trulicity and Ozempic, so the vast multitude of reviews on them would apply to your questions here too. Why wouldn’t they just put you on a once weekly version that does the same exact thing?
I used Trulicity briefly, until insurance started refusing to cover it anymore. I was a massive fan of it. I’d love to get back onto it, but have given up for now. There’s a second hormone T1s can’t make anymore, called amylin, and these types of medications fulfill the same role and close the communication gaps in how our metabolism works. It’s difficult to explain, but I felt like it gave my metabolism an attitude adjustment. Everything just worked better, like it’s supposed to. I was more sensitive to insulin, needed less basal, and discovered a new sense of food satiety.
I will say that I don’t like the auto injector that comes with Trulicity. You get 4 single-user pens in a box, and they’re completely automated and designed so you never see the the needle nor have to push it into yourself. You just put it on your skin and press a button, then the needle pierces you, injects the medicine, and pulls itself out… all in a fraction of a second. Been taking insulin for almost 4 decades, but that thing would make me cry. It’s explosive. Really felt like my thigh or stomach was being torn open from the inside out. Others don’t seem to complain as much, so maybe it had something to do with my extreme high altitude. I don’t know. But I would choose Ozempic over Trulicity for the delivery device alone.
I can’t personally speak to the heart and/or cholesterol benefits because I haven’t dealt with those complications yet, but the entire GLP-1 RA drug class is being revered for heart health. Ozempic, Trulicity, and Wegovy are all weekly variants of Victoza that have been FDA approved to reduce the risk of cardiac outcomes, as well as treat diabetes.
3 Likes
I was on a daily dose of Victoza as a type 1 for years, then switched to Trulicity because it was newer and a weekly dose. It was painful so my endo switched me to Ozempic.
As type 1s, we are missing other hormones than just insulin, so it has been worth it for me because I eat less and my numbers are better. If it’s covered, give it a try (although, like the other person said, Victoza is a little old now - so maybe Trulicity or Ozempic would be better for you).
I wouldn’t go without it now!
2 Likes
Dunno from Victoza, but waaaaay back when I was on MDI my endo put me on Metformin, thinking it might help with stubborn dawn phenomenon. It didn’t – switching to a pump did – but he said “Might as well stay with it as it does other good stuff,” so I did. Never had any side effects. Much more recently my current-but-one endo had me start using Jardiance, also T2 stuff, which has had a more dramatic effect toward attenuating my high and low excursions. Unfortunately it’s tier 3 and costs a lot in the donut hole, but I do like it. I have T2 friends who have done really well with Ozempic, and would love to give that a try, not least for the appetite suppression thing. As @Allison1 points out, we T1s are also missing the hormone that switches off the hunger reflex, something I only struggled with after getting T1. But endo and insurance nixes it for T1s.
1 Like
I was in trials for a sythetic analog of amylin called Parmlintide. It’s available under the name Symlin. The company is called Amylin Pharmaceuticals. Amylin is produced and cosecreted by the beta cells.
It has good benefits. One takes a sub-q fixed dose just before a meal. It reduces post-prandial bG excursions. It slows gastric emptying so you don’t need lead time for your meal bolus. A lot of people can reduce their insulin. Food with high glycemic indexes are better tolerated. IIRC, it helps maintain bone density.
For some reason that I can’t recall, I stopped taking it. Nothing to do with Symlin itself. I tried to start it again, but found it hard to consistent. I’d forget to carry it with me, so didn’t use it when I went out. When I did have it or was at home, I’d forget to take it. It’s better using consistently. I decided it wasn’t worth the effort if I couldn’t use it properly.
I may have just talked myself into trying it again…
I tried Symlin maybe 12-15 years ago. It was so hard to manage my blood sugars with it, but that was before I had a CGM. These other meds seem to work much better and have a similar effect (IMHO)!
I actually tried to get Symlin when insurance yanked the Trulicity away. My Internist who usually does my diabetes prescribing wasn’t comfortable with it, because she’d never prescribed it before. So she gave me a referral to an endocrinology clinic on the other side of the state (there aren’t many Endos in Colorado), who flat out refused to prescribe it. That doc told me that her job was to manage my pump settings (which I can do on my own, thankyouverymuch) and my job was to manage my expectations, and not come in with expectations. Ugh! (I seriously despise every Endo office I’ve ever had the misfortune of dealing with.) She also told me the only other thing her office prescribes T1s are the GLP-1 RAs that we’re discussing in this thread, and only if the patient’s insurance allows it to be prescribed for weight loss because they’re otherwise not indicated for us… which mine does not.
I know there are adherence issues because it requires an extra injection every mealtime. Most people stop taking it because who wants to take 3 extra shots in a day? The thing is… I found a study showing absolutely zero adverse effects from mixing it with insulin. It just wasn’t done in the clinical trials that way, so all the documentation says not to mix it.
1 Like
It is SO HARD to find an endo that “gives” you the freedom to take care of yourself, yet is knowledgeable enough to know what is going on in the type 1 world.
I’m about ready to subscribe to a diabetes medical journal so I can just keep up myself…
Robyn - Thanks for that. One studs in 2023 mixed them in th same vial for use in a pump! Hope those results lead to new products or recommendations.
1 Like
Depending on their specialties, most doctors dedicate anywhere from 12 - 15 years of their lives training to be the best medical doctor that they can be. And yet when they USE that knowledge to try to give their patients what will work the best for the patient’s health, some non-medically-trained person working for a greedy insurance company overrides the professionally prescribed medication.
Aren’t we all sick of the insurance companies acting like a self-appointed god who rules what medications we can or cannot take for our overall well-being based solely on THEIR bottom line?
And then the government steps in and says that no one will pay more than $2000 out-of-pocket for their drugs. Nice try, but we all know the insurance companies just remove those drugs from their formulary, thus allowing them to charge whatever they $#@^ well please for a drug they used to cover.
The doctors are upset that they have to keep writing “exception” letters before the insurance company will allow their patients to have the drugs which they, in their trained opinion, will work best for that patient.
The healthcare industry in this country is SO messed up! Our common sense, our experience with our very individualized disease, and our trained doctors should have absolute control over our treatments and medications, not big Pharma and the greedy insurance companies.
Thanks for letting me vent, folks. Sometimes my frustrations just leak out all over the keyboard…
2 Likes
Type1 since 1973 when my sister sharing my bedroom caught a Flu which she spread to me. She was diagnosed 1 week after Flu was gone and I was diagnosed 7 days later DKA. I had Islet Cell Transplant at Johns Hopkins Medical Center in 2018 & in 2019 they found cells not working because of the anti-rejection meds which caused my normal blood pressure to go up.Decent doctors have told me that medical conditions are bought & paid for by Pharmaceutical companies. Never Listen to Only 1 Doctor.Do Online Research worldwide on the drugs long term effects. Find what other docs say before agreeing to take anything new.USA Medical is crooked and docs do things 100% of the time to Benefit themselves not their patients. I drink Organic Beet juice 8ozs daily and feel great from it. Nature can cure just about everything. Big Pharma doesn’t want anyone cured or helped by Natural means.
Your experience with islet cell transplantation is new info for me. If I understand you correctly, your 2018 islet cell transplant failed because of the anti-rejection meds. I always thought that the anti-rejection meds were needed to enable the new islets to survive and then manage your blood glucose naturally.
I’ve not followed the islet cell transplant effort closely over the years because I’ve personally did not want to take anti-rejection drugs. It seems your failed experience showed a side of this effort that invested parties like the researchers, doctors, and the big money backers did not want covered or discussed. That’s disappointing.
I share your distrust of Pharma and the medical establishment that supports them. Natural treatments, like ways of eating, receive little to no recognition since they do not enable “blockbuster breakthroughs” that can promote the money-making machines of corporations.
That being said, I still believe that we as a society can evolve toward a better way of living with diseases like diabetes.
I strongly considered this more than once. There are 2 studies going on near me. One is the old fashioned one where they access your portal vein and push the cells and they attach to your liver. You need anti rejection meds just like any organ transplant to prevent the immune system from attacking the implanted cells.
The newer attempt is encapsulating the cells and implanting them under your skin, the total encapsulation where they were protected from immune system, failed, so now they are doing it where they are kept in place but exposed to the immune system, this also requires immune suppression to protect the cells.
The immune suppressive drugs that they use are pretty harsh and in my opinion, rather dangerous. It makes sense if you need a heart or kidney, but generally the side effects of the drugs are worse than having diabetes. This is the reason no one gets a pancreas transplant unless another organ is also needed, like a kidney.
Blood pressure regulation is just one of the issues you can have with these drugs, also you are susceptible to infections because your immune system is compromised. I decided to pass on the transplant for now, but if they can eliminate the need for immunosuppressants, I will reconsider.