Continue on with Cabergoline? Has anyone stopped?

Howiesmom

Howiesmom

Active Member
Howie started on Cabergoline 2/4/21. Just prior, he was up to 55 units BID. The lowest dosage he ever got down to was 17 units starting 7/12/21 but that was only for a few days and then went back up. He’s been down to doses in the 20s a couple times, but nothing earth shattering. Currently he’s at 37 units. I’m just wondering anyone’s thoughts if spending the money is still worth it. He gets it everyday (never started EOD as some people do). I verified the dosing was correct with my vet when we were in in April (.6mL at 100 mcg). We did experiment with a higher dose last year up to .9mL but saw no changes so went back down to .6mL for his weight. I’m scared to take him off it but am questioning if it’s worth it. On the Feline Acromegaly group on FB, the admin Gayle mentioned research from Dr. Gilor at U of FL mentioning that cabergoline is basically not effective except for the small research studies unless there is imaging done to show that it impacting the tumor. Does anyone know more about Dr. Gilor? I obviously never got imaging at diagnosis or upon starting cabergoline, so have no baseline data.

I know many of you have had success, but you saw it pretty early on. I currently pay $232 to get it through my vet (who gets it from Wedgewood). When I asked for the script so I could get it myself, he pitched a fit so I didn’t ask again as he lets me get Levemir on my own and not through him. I hate to upset our relationship as he runs an animal hospital and pharmacy. As you can imagine, getting this filled at similar times of getting Levemir refills from Marks is a huge dent in my budget. I love my Howie and go to the moon and back for him, but just don’t want to waste money on a med that may not make any impact on his condition. So please don’t judge me as an uncaring pet mommy. I’ve always thought that the Cabergoline at least keeps him from getting back up in higher doses again, but I could be wrong.

I appreciate your thoughts, ideas and perspectives.
 
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I will let you know how my Snuffles does w/o cabergoline. I have one day's worth left and Wedgewood does not have one of the components to compound more. Yesterday they said maybe get the component in two weeks.:(:(
 
No judgment here! You are a very caring mom to Howie!

I find that Gayle for some reason is very anti-Cabergoline. I only know that before the Cabergoline my Darcy was so resistant to the insulin that it couldn’t do much to lower his BG. After Cabergoline everything changed. You have the double whammy of IAA, making it even tougher. :bighug:

Perhaps Wendy will know more about what Dr. Gilor said or has done with research. If there’s actual research it would be published somewhere.
 
Larry and Kitties said:
I will let you know how my Snuffles does w/o cabergoline. I have one day's worth left and Wedgewood does not have one of the components to compound more. Yesterday they said maybe get the component in two weeks.:(:(
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Oh boy. Thanks for that heads up as it’s close to the time I need to put in a refill request. I may just go back and kindly demand the script so I can get it in my own as I know legally they have to provide it to me.
 
Suzanne & Darcy said:
No judgment here! You are a very caring mom to Howie!

I find that Gayle for some reason is very anti-Cabergoline. I only know that before the Cabergoline my Darcy was so resistant to the insulin that it couldn’t do much to lower his BG. After Cabergoline everything changed. You have the double whammy of IAA, making it even tougher. :bighug:

Perhaps Wendy will know more about what Dr. Gilor said or has done with research. If there’s actual research it would be published somewhere.
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Thanks, Suzanne. I did get clarification from Gayle that the comment she made about Dr. Gilor came from a conversation he had with another member of the FB group, so no research paper. But I would hope he wouldn’t be making those claims without research to back it up somehow. I certainly acknowledge that there haven’t been huge research groups of cats on cabergoline. I hope you’re doing well!
 
Howiesmom said:
Thanks, Suzanne. I did get clarification from Gayle that the comment she made about Dr. Gilor came from a conversation he had with another member of the FB group, so no research paper. But I would hope he wouldn’t be making those claims without research to back it up somehow. I certainly acknowledge that there haven’t been huge research groups of cats on cabergoline. I hope you’re doing well!
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Well, if it’s just comments that this vet made without research to back it up, she should not be disseminating them further. Maybe he was just talking about “in his experience” with cats he has seen. He obviously never looked at my cat’s spreadsheet! Yours either @FrostD and plenty of others.
 
Gayle and I...don't see eye to eye on a lot of things lol

I'm of the mindset that it can't hurt - that's why we initially tried it - though I certainly understand the cost aspect. Supposedly it works by suppressing growth hormone (the JFMS study found it did shrink smaller tumors but that's limited evidence) - and growth hormone affects a lot of other things besides insulin requirements (heart, soft tissue, etc). It's possible his insulin needs are going up because tumor is growing, but no way of knowing.

What's his current dose and frequency?
 
FrostD said:
Gayle and I...don't see eye to eye on a lot of things lol

I'm of the mindset that it can't hurt - that's why we initially tried it - though I certainly understand the cost aspect. Supposedly it works by suppressing growth hormone (the JFMS study found it did shrink smaller tumors but that's limited evidence) - and growth hormone affects a lot of other things besides insulin requirements (heart, soft tissue, etc). It's possible his insulin needs are going up because tumor is growing, but no way of knowing.

What's his current dose and frequency?
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He gets .6mL every day (he’s 13.3#s). Thank you for the reminder of the other things that the growth hormone impacts. He had an HCM test done about a year ago so we could get baseline data for any heart issues and it came back normal. I am thinking he’s starting to get some arthritis as I can hear clicking (especially in his shoulders). Not sure if growth hormone impacts joint health too. I just started him on fish oil to see if it helps before moving on to other options.
 
Howiesmom said:
He gets .6mL every day (he’s 13.3#s). Thank you for the reminder of the other things that the growth hormone impacts. He had an HCM test done about a year ago so we could get baseline data for any heart issues and it came back normal. I am thinking he’s starting to get some arthritis as I can hear clicking (especially in his shoulders). Not sure if growth hormone impacts joint health too. I just started him on fish oil to see if it helps before moving on to other options.
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What's the concentration? I was just wondering if you had room to increase the dose.

I have read that acro cats do tend towards arthritis, Mr Kitty has it too just not bad yet. From what I understand it's a little different than just your typical old-age arthritis.
 
FrostD said:
Gayle and I...don't see eye to eye on a lot of things lol
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My feelings about her are stronger than that. ;) Stating as fact something second hand said to someone else without researching backing it, let's just say it shouldn't be done. Yes the first couple studies were small ones, but the South American group that did the latest paper have now used it on over 50 cats, though just 23 at the time of the paper. As Melissa said, it's about more than just the insulin dose. Acromegaly can have some nasty side effects. If you can delay or improve those and improve his quality of life, it's worth it.

A couple quotes from that JFMS study, the emphasis is mine:
Inclusion criteria were diabetic cats with a serum IGF-1 concentration>1000ng/ml3or IGF-1>800ng/ml with pituitary enlargement (>4mm dorsoventral height on CT,14or>3.3mm transverse height on MRI15). Considering the results of Niessen et al,3where it was shown that serum IGF-1 concentrations>1000ng/ml have a positive predictive value for HST in 95% of UK diabetic cats, the necessity of pituitary imaging in these cats was not deemed essential.
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and
It appears that the best effect of cabergoline is seen in cats with with a relatively small pituitary tumor and a serum IGF-1 concentration<1500ng/dl.
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So imaging is not essential before starting cabergoline, but it could give you a better idea of how well it will work. Is it worth the cost and risk of anaesthesia to satisfy that curiosity? That's something you have to evaluate. One of the reasons people choose cabergoline is the savings over other treatments.

From private communication between one of our members and one of the authors of the JFMS paper:
Our results are much better in cats with a slight increase in the pituitary gland (P: B) as opposed to macroadenomas. We have had remission of diabetes with cabergoline, or decrease in insulin doses in others. However, in few cats the IGF-1 values have been able to decrease, but in the majority not, improving the management of glucose control. The cats in the article, one maintained remission of diabetes for more than 2 years with IGF1 values that increased over time to> 1000 without requiring insulin and died from a liver tumor. The other two required less insulin, but died from cardiac problems.
We have seen few adverse effects with cabergoline (increased transaminases) so I consider it a good option to try. I hope I have answered your questions. If you start treatment tell me about your experience.
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@Larry and Kitties Sorry to hear about the cabergoline shortage. I hope the compounder is wrong about the timing. I've heard it's supposed to be tapered off.
 
FrostD said:
What's the concentration? I was just wondering if you had room to increase the dose.

I have read that acro cats do tend towards arthritis, Mr Kitty has it too just not bad yet. From what I understand it's a little different than just your typical old-age arthritis.
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His is 100mcg/mL or however the units go!
 
Wendy&Neko said:
My feelings about her are stronger than that. ;) Stating as fact something second hand said to someone else without researching backing it, let's just say it shouldn't be done. Yes the first couple studies were small ones, but the South American group that did the latest paper have now used it on over 50 cats, though just 23 at the time of the paper. As Melissa said, it's about more than just the insulin dose. Acromegaly can have some nasty side effects. If you can delay or improve those and improve his quality of life, it's worth it.

A couple quotes from that JFMS study, the emphasis is mine:
and

So imaging is not essential before starting cabergoline, but it could give you a better idea of how well it will work. Is it worth the cost and risk of anaesthesia to satisfy that curiosity? That's something you have to evaluate. One of the reasons people choose cabergoline is the savings over other treatments.

From private communication between one of our members and one of the authors of the JFMS paper:


@Larry and Kitties Sorry to hear about the cabergoline shortage. I hope the compounder is wrong about the timing. I've heard it's supposed to be tapered off.
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Thank you so much, Wendy and everyone else who has chimed in! Such wonderful feedback and information. I will definitely not take him off the Cabergoline but appreciate the dialogue it opened about the cost benefit analysis and the fact that there are other things to consider besides just insulin dosing. I certainly wish we could see the lower dosing like several others, but his IGF-1 and IAA results were pretty high for both. Howie has been my lifeblood for the past 2+ years and I just want him to have good QoL. If he was a lot younger (currently 12 or 13), I might consider imaging.
I just appreciate all of you who help me learn (and re-learn) and ask questions that may sound dumb from time to time!
 
No dumb questions. :bighug: And to answer the question you asked up top. @Bronx's dad (GA) did stop cabergoline, when he decided to go for SRT, same for Deena and Malachai. Karen stopped giving it to Maxi after 4 weeks, when he got bad diarrhea, but that could have been also due to pancreatitis he was diagnosed with shortly after.
 
We had no side effects with taking Bronx off of Cabergoline.. Was no problem taking him off it, just did it gradually as there were studies in humans to taper off slow. Seems our tough kitties handle it fine. Never a dumb question here, ask away!
 
In for later. I will also be going off Cabergoline soon, as it's had no effect so far and will be doing SRT at some point soon.
 
Larry and Kitties said:
I will let you know how my Snuffles does w/o cabergoline. I have one day's worth left and Wedgewood does not have one of the components to compound more. Yesterday they said maybe get the component in two weeks.:(:(
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Any update in the Cabergoline components? I need to put in an order for a refill. Thanks!
 
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