Rosie diagnosed with acro and no available treatment - need advice

[Thalia & Rosie]

Mt 12 yo Rosie was diagnosed with acromegaly a week ago. I've been in denial, so only ready to face this forum now.

The specialist said that there's no treatment available for it in our country. We don't have vets here who do the surgery or have radiation facilities for this. The two medical management options, cabergoline and bexacat, are also not available in our country. The specialist said I can try source it from abroad through one particular vet in the country, but I'd have to manage that and the formulation myself.

Even if I did source the meds, I can't afford it. I don't have pet insurance either.

The specialist said that our goal has now changed - it's no longer to manage her DM, but to improve her quality of life. But how can I do that, given the circumstances? How is that fair to her? I'm scared that I'm probably going to have to make a very hard decision soon.

 

[Wendy&Neko]

Hello over on this forum. I'm sorry for the diagnosis. Can you tell me what the IGF-1 value was for her diagnosis?

Bexacat is not a medical management option for acromegaly, so it not being available is not a problem. It is in fact contraindicated for acromegaly. Not being able to get cabergoline is more of an issue. We can help you figure out Rosie's cabergoline dosing, if we know her weight. Then you'd just need a compounding pharmacy to make up a liquid. Have you had a quote yet on the cost? Just wondering why you think you can't afford it. It is the most cost effective of the treatment options.

The specialist said that our goal has now changed - it's no longer to manage her DM, but to improve her quality of life.

I disagree with the specialist. You do want to manage her DM. The more time she can spend under renal threshold, the better. Acromegaly is hard on kidneys by itself, you can ease the burden on the kidneys if she's in better numbers. We have a few acrocats who have been reasonably regulated, had no further treatment other than insulin, and lived for 4-5 years. That's not the average, but we have seen it happen. I do agree that quality of life is important. If for example, she has arthritis, then she should be on some sort of pain medication such as buprenorphine or gabapentin. But that would be true regardless of having treatment or not. What sort of acro symptoms is she showing?

 

[Suzanne & Darcy]

Hello. I am very sorry to hear about Rosie’s acromegaly diagnosis. I know it really knocked me back on my heels for a while when we first were diagnosed. My cat was diagnosed in early February 2021 when COVID was still really impacting veterinary medicine. I wanted to get the SRT treatment for him at that time, but I couldn’t even get the veterinary teaching hospital (North Carolina State University) to return my phone calls let alone get an appointment. We started Cabergoline treatment, and his insulin dose decreased a lot; he finally was able to have decent blood glucose numbers. I was happy about that. I would try to source some Cabergoline if at all possible.

How much insulin is Rosie getting now? What kind of BG numbers is she having?

 

[Thalia & Rosie]

Hello over on this forum. I'm sorry for the diagnosis. Can you tell me what the IGF-1 value was for her diagnosis?

Bexacat is not a medical management option for acromegaly, so it not being available is not a problem. It is in fact contraindicated for acromegaly. Not being able to get cabergoline is more of an issue. We can help you figure out Rosie's cabergoline dosing, if we know her weight. Then you'd just need a compounding pharmacy to make up a liquid. Have you had a quote yet on the cost? Just wondering why you think you can't afford it. It is the most cost effective of the treatment options.


I disagree with the specialist. You do want to manage her DM. The more time she can spend under renal threshold, the better. Acromegaly is hard on kidneys by itself, you can ease the burden on the kidneys if she's in better numbers. We have a few acrocats who have been reasonably regulated, had no further treatment other than insulin, and lived for 4-5 years. That's not the average, but we have seen it happen. I do agree that quality of life is important. If for example, she has arthritis, then she should be on some sort of pain medication such as buprenorphine or gabapentin. But that would be true regardless of having treatment or not. What sort of acro symptoms is she showing?

I don't have the IGF-1 levels on hand, but I remember the specialist saying they weren't crazy high, but definitely higher than they should be. That, along with her symptoms just made so much sense for what I've been seeing the past 18 months or so.

- She's lost her voice and is snoring up a storm (although not struggling to breathe generally)
- She has a potbelly
- Her liver is slightly enlarged
- Insatiable diet and unquenchable thirst
- Her kidneys are luckily still in really good condition, considering

She's currently on 4U Lantus (I haven't updated my bio - her dosage was slightly upped recently), and her BG values are still 20-23 (360-400ish).

Regarding the cost, I know cabergoline is the more cost effective option but that is still relative to other treatments. I got a rough estimate, but it's not just the cabergoline cost itself.
- Import duties/costs for getting it into my country & fees for a pharmacy to make the formulation for me
- Her insulin dosage will need to increase a lot
- She'd need a freestyle libre monitor
- Regular visits with the specialist (one visit with a specialist here is 3x the cost of a normal vet visit)
- Regular blood tests to monitor a few things for the first 4-6 weeks of her getting onto cabergoline

If it was just the cost of the cabergoline we could manage, but it's not just that.

 

[Wendy&Neko]

If her blood sugars are that high, then her dose will need to increase. She does not need to have a Freestyle Libre monitor. They are fairly new. Until recently, everyone tested with blood glucose monitors by hand. You also do not need to go to a specialist if the normal vet will work with you. You don't need lab blood work after starting cabergoline, but you do need to test her blood sugars at home.

Some cats do really well on cabergoline. We've seen quite a few come off of insulin, at least two of those in 10 days or less.

 

[Lexy]

Mt 12 yo Rosie was diagnosed with acromegaly a week ago. I've been in denial, so only ready to face this forum now.

The specialist said that there's no treatment available for it in our country. We don't have vets here who do the surgery or have radiation facilities for this. The two medical management options, cabergoline and bexacat, are also not available in our country. The specialist said I can try source it from abroad through one particular vet in the country, but I'd have to manage that and the formulation myself.

Even if I did source the meds, I can't afford it. I don't have pet insurance either.

The specialist said that our goal has now changed - it's no longer to manage her DM, but to improve her quality of life. But how can I do that, given the circumstances? How is that fair to her? I'm scared that I'm probably going to have to make a very hard decision soon.

 

[Lexy]

I recently lost my Lexy to what we feel was acro, but we treated the illness and not either of the things the rest suggest, It just means they need more insulin, Amy cat varied from a dose of 8units to 18units, 12 hr insulin. What I was using comes from Canada, It's levimir, I don't know if they have that where you are. The pens, they were what helped Lexys #s to be somewhat normal. I don't think they all the other treatments are guaranteed either. I had a vet here who said, just learn from your cats glucose results, if they are high for 2 days and rising increase the insulin in small increments 1Unit and see how they do, My mentor told me how to keep her in check. I had an auto feeder which gave her 1/8th can of pate food, low carb, and it was 3x in day and 3x at night with 1/4 can at 7am and ,7 pm. She managed pretty well untill her sudden drastic downhill Friday. I lost her that day, I can't speculate, but it's possible a tumor may have burst, she had a belly full of Blood, and she would have died in my arm had I not got her in. We managed this 4 years with her. It's not the death sentence it just means they require more insulin and someone to keep an eye, she would be 14 in April, so I did the best I could give what she had, not typical symptoms for an acro cat, she didn't have big paws, wide jaw etc. she just had much need for insulin. Honestly from 2022, to now she had some periods where it was almost normal, she didn't get sick often, and we did once a year blood work. If you would like to see her charts I can share them to give you an idea. She didn't respond to .5 1 or 3,units, she needed higher right off. Her BG was 500 at her diagnosis. I'm a trained vet tech so no one was going to tell me that my cat should have been put to sleep for a treatable disease. Some vets are heartless, some have hearts of gold. My name is Linda, I just came back on after losing Lexy and you aren't the only one who is dealing with a cat diagnosed with this. Go on Diabetic cats and look at what some people are putting up. Shame no one has updated this. I have been telling done like you my experience with Lexy....

 

[Wendy&Neko]

@Lexy. Linda, I am sorry you lost your Lexy.

What I was using comes from Canada, It's levimir, I don't know if they have that where you are.

Levemir has also been discontinued in Canada. Remaining supply is supposed to be gone by Feb 28, 2026. Remaining supplies in the UK and Europe may last to the end of this year. Levemir is being discontinued world wide. It is the manufacturers business decision. And unfortunate since it was such a great insulin for cats, especially those needing higher doses.