Pasireotide to treat Acromegaly

Howiesmom

Howiesmom

Active Member
I'm playing voicemail with my vet right now but with Howie's recent diagnosis of acromegaly, I sent him information on using Cabergoline as a treatment from some posts on this forum. In today's voicemail he left me, he read information about Pasireotide as an effective treatment but has heard it it is quite costly (info came from what I had sent him from this forum). I haven't seen anyone on here (recently) mention that they are using it as a treatment option. So I'm just wondering if anyone is or what people know/think about it and if you have ideas on cost? Howie is blowing through 1 Levemir pen every 3-4 days now as he is at 55 units BID and climbing. So if it is REALLY expensive on top of all the other expenses, I may push more on the Cabergoline unless there is a resounding reason to not. This is my vet's first acro kittie.
 
Pasireotide is mind blowingly expensive. The only people who have used pasireotide, have used it in a trial at Royal Veterinary Clinic where the drug was donated by the manufacturer. Back in the day, I got my vet to investigate, and Signifor (the product name, pasireotide is the generic) was something like $5000 every few months for the doses I'd need. The better product was Signifor LAR (long acting) and back then although it was permitted in Canada, it wasn't findable. Regular Signifor is daily injections.

In a previous post, Larry investigated what it costs for humans in the US, and it was around $62,000 per year. Cat sized doses would be less, but still. :rolleyes: Here is a post that talks about pricing for cat sized dosing: https://www.felinediabetes.com/FDMB/threads/pasireotide-signafor.190784/

Radiation therapy or surgery are cheaper. Cabergoline is the cheapest option of all. And because of the cost, there are a lot more people using it. Tillie wrote the authors of the South American study on use of cabergoline, and was told they have used it in over 50 cats and it is their go-to drug. Start reading at post 30 in this thread.
 
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Wendy&Neko said:
Cabergoline is mind blowingly expensive. The only people who have used pasireotide, have used it in a trial at Royal Veterinary Clinic where the drug was donated by the manufacturer. Back in the day, I got my vet to investigate, and Signifor (the product name, pasireotide is the generic) was something like $5000 every few months for the doses I'd need. The better product was Signifor LAR (long acting) and back then although it was permitted in Canada, it wasn't findable. Regular Signifor is daily injections.

In a previous post, Larry investigated what it costs for humans in the US, and it was around $62,000 per year. Cat sized doses would be less, but still. :rolleyes: Here is a post that talks about pricing for cat sized dosing: https://www.felinediabetes.com/FDMB/threads/pasireotide-signafor.190784/

Radiation therapy or surgery are cheaper. Cabergoline is the cheapest option of all. And because of the cost, there are a lot more people using it. Tillie wrote the authors of the South American study on use of cabergoline, and was told they have used it in over 50 cats and it is their go-to drug. Start reading at post 30 in this thread.
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Thanks for this! It sounds like a good treatment but not at the prices my vet was initially finding. He saw an article from Dec 2020 from a Dr. Folger that said $2-4k a year but only needing to give it every 2-3 months. He’s not opposed to the cabergoline and will be checking prices tomorrow. It would be interesting if he’s on a larger dose of cabergoline and a smaller dose of pariseotide if it nets out close to even in costs per year. Probably not but wishful thinking!
 
Sounds like your vet was talking about the long acting version. If he really can find it for a lot cheaper, it would be good to know as a valid option.

We did have one member hear from Royal Veterinary Clinic that they had some success combining cabergoline with octreotide. In this post, some people have posted their cabergoline pricing, it's much cheaper.
Cabergoline as a possible treatment for acrocats: discussion
 
Wendy&Neko said:
Sounds like your vet was talking about the long acting version. If he really can find it for a lot cheaper, it would be good to know as a valid option.

We did have one member hear from Royal Veterinary Clinic that they had some success combining cabergoline with octreotide. In this post, some people have posted their cabergoline pricing, it's much cheaper.
Cabergoline as a possible treatment for acrocats: discussion
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My vet had read some reasearch and in vets-only discussion boards about the use of octreotide and it sounds like it wasn’t a viable option in the end. Who knows?! I’ll post if I hear more about pricing. I told the vet that some members are using Wedgewood and Diamond pharmacies for their cabergoline due to good pricing and my vets uses them! Yeah! One other question on dosing of it...he found research from RVC stating they could go up to 15mcg/kg. Any knowledge on that? I see everyone else doing 10mcg/kg. I’m not sure of the difference and why you would dose higher. Maybe the IGF-1 result level? How much insulin resistance there is? I appreciate all your help!
 
Octreotide by itself did not work - study was done at Colorado State University where Neko had her SRT. However, Royal Vet Clinic tried it in combination with cabergoline and said they had success. I just haven't seen formal results.

I never used cabergoline, but @Olive & Paula did and I know she tweaked the amount up to control symptoms. Not sure what dose she ended up at.

The IGF-1 level has nothing to do with it. Neko had a higher IGF-1 level than a couple cats with a lot larger tumour, there is no correlation. Tumour size and type/location I think has more to do with it.
 
Wendy&Neko said:
Octreotide by itself did not work - study was done at Colorado State University where Neko had her SRT. However, Royal Vet Clinic tried it in combination with cabergoline and said they had success. I just haven't seen formal results.

I never used cabergoline, but @Olive & Paula did and I know she tweaked the amount up to control symptoms. Not sure what dose she ended up at.

The IGF-1 level has nothing to do with it. Neko had a higher IGF-1 level than a couple cats with a lot larger tumour, there is no correlation. Tumour size and type/location I think has more to do with it.
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Thanks for the helpful info!
 
It didn't take me long to find it.

Got suspension from Wedgwood. Oil based, almond oil to be precise. Bacon/marshmallow flavor because of bitterness.

Ollie was on it 657 days. Started at 0.6 ml (100 mcg/ml). in October. Dr ordered it at dose of 0.9 ml trusting me to only give the 0.6 ml so I got more medicine for my money. Insulin dose was 9 units twice a day. Stridor was severe, club feet which were painful for her to walk (not neuropathy), headaches, light sensitivity, hcm, weight gain so I fed on calories needed vs amount of food to maintain ideal weight.

In 10 days she started racing down the insulin scale. Symptoms started to lessen. In December her insulin dose was 4.5 units (could never get lower than that). But her stridor returned. So the caber was increased to 0.7 ml. In January Caber went up to 0.8 ml. was at that dose for about 1 yr. Eventually went up to 0.9 ml (with vets ok). Did that for a week, then tried 0.8 ml again. It wasn't enough so started increasing by 0.01. Ollie ended at 0.84 ml, with no symptoms. During her time on cabergoline, She walked with confidence, jumped, played with toys, run, trotted. no headaches, could not hear her trying to breathe (took awhile for me not to panic because I could not hear her). Being a normal cat. It was fun watching her be happy and enjoy life.

The cabergoline from Wedgewood cost me $125.50/month. Because Dr script higher dose it lasted 45 days. If you use auto refill option, shipping is free.

Me personally, it was Ollie's only option to be comfortable if it worked. We had nothing to lose and everything to gain by trying. I had to change vets, tried 4 before I found one willing to try it. I gave the vet all the studies on it. I plead my case. The vet knew nothing about acro. When she saw and examined Ollie at great length, she agreed it was her only option except SRT, which just couldn't afford. I agreed to sign a liability waiver and routine fructosomine levels (which she never did). I was willing to agree to most any reasonable request she wanted in order to get it. I'm so glad I fought for Ollie.
 
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I get 15ml of 300mcg/ml from Wedgewood for about ~$176. I give 0.25ml daily and that is a 10mcg/Kg dose. It shouod last 60 days. I mix it with his food and he eats it fine. I have been administering it for a little over a month. It seems to be slowing the increase in required insulin. My Snuffles is on 4 1/5 units Levemir and 8 units N twice daily.
 
Olive & Paula said:
It didn't take me long to find it.

Got suspension from Wedgwood. Oil based, almond oil to be precise. Bacon/marshmallow flavor because of bitterness.

Ollie was on it 657 days. Started at 0.6 ml (100 mcg/ml). in October. Dr ordered it at dose of 0.9 ml trusting me to only give the 0.6 ml so I got more medicine for my money. Insulin dose was 9 units twice a day. Stridor was severe, club feet which were painful for her to walk (not neuropathy), headaches, light sensitivity, hcm, weight gain so I fed on calories needed vs amount of food to maintain ideal weight.

In 10 days she started racing down the insulin scale. Symptoms started to lessen. In December her insulin dose was 4.5 units (could never get lower than that). But her stridor returned. So the caber was increased to 0.7 ml. In January Caber went up to 0.8 ml. was at that dose for about 1 yr. Eventually went up to 0.9 ml (with vets ok). Did that for a week, then tried 0.8 ml again. It wasn't enough so started increasing by 0.01. Ollie ended at 0.84 ml, with no symptoms. During her time on cabergoline, She walked with confidence, jumped, played with toys, run, trotted. no headaches, could not hear her trying to breathe (took awhile for me not to panic because I could not hear her). Being a normal cat. It was fun watching her be happy and enjoy life.

The cabergoline from Wedgewood cost me $125.50/month. Because Dr script higher dose it lasted 45 days. If you use auto refill option, shipping is free.

Me personally, it was Ollie's only option to be comfortable if it worked. We had nothing to lose and everything to gain by trying. I had to change vets, tried 4 before I found one willing to try it. I gave the vet all the studies on it. I plead my case. The vet knew nothing about acro. When she saw and examined Ollie at great length, she agreed it was her only option except SRT, which just couldn't afford. I agreed to sign a liability waiver and routine fructosomine levels (which she never did). I was willing to agree to most any reasonable request she wanted in order to get it. I'm so glad I fought for Ollie.
Click to expand...
So helpful to read! How did you know to increase and decrease the cabergoline dose over time?
 
Larry and Kitties said:
I get 15ml of 300mcg/ml from Wedgewood for about ~$176. I give 0.25ml daily and that is a 10mcg/Kg dose. It shouod last 60 days. I mix it with his food and he eats it fine. I have been administering it for a little over a month. It seems to be slowing the increase in required insulin. My Snuffles is on 4 1/5 units Levemir and 8 units N twice daily.
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How much does your kittie weigh (so I can compare how much Howie would need at 13.1 lbs) and how do you get it (in what oil and flavor)? Thanks!
 
Howiesmom said:
So helpful to read! How did you know to increase and decrease the cabergoline dose over time?
Click to expand...

I based it on her stridor (breathing). Ollie's breathing was so loud and labored to get air in. You could hear her over the TV in other end of house. 24/7. It never stopped. At times it looked like she was struggling to suck in air and sometimes snorted on inhale. Sometimes she whistled when exhaling. When it happened for 2 days straight (to make sure it wasn't a fluke) I upped the dose, gave it a week to see if it worked. After some time on 0.9 ml, I tried to lower to see if a lower dose would work. I did the same with her Buprenorphine (I always tried to see if a lower dose can maintain her). With the caber I knew 0.8 was not enough but 0.9, I had a feeling (why I don't know) wasn't needed. That's why the increase was micro dosed, She did well on the 0.84. I did keep her Dr informed each time dose changed, and copies of her ss.

ETA: her Dr knew me well enough to know I would not abuse her meds and that I would try lowering doses to see if it was a possibility.
 
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