Pasireotide Help

hello everyone,
Is anyone on this board possibly from the Los Angeles area who has tried Pasireotide?
Malachai is on Cabergoline and I don't think it's working. I can't afford SRT (14K here) but was thinking maybe even one shot of the Pasireotide would help if I could afford it. Someone over on the Acromegaly FB page had their cat got off of insulin after only one shot.
I would love to hear about the process from anyone who has gone this route.
Like are there any pretest that need to be done before we can try it? (X-rays/scans). I don't know much about it except I know it's a shot and that it's expensive...
I'm just becoming desperate at this point. I know he's in pain.
Is there anything else I should be giving him to make him feel better? I just started CBD oil once a day but so far it doesn't seem to be doing anything...thanks!

 

Can you ask your vet to investigate the cost of pasireotide where you are? When I investigated it a couple years ago, my vet found it was about $5,000 for a 3 months supply in Canada. From an acro researcher on the east coast I heard it was $2000/month in the US, and she didn't know anyone in the US who had tried it yet. That was the daily pasireotide (Signifor), not the monthly version (Signifor LAR). At that time my vet couldn't even find a source for the long lasting/monthly dosed one that had just been approved for use in Canada. But it's been a couple years so maybe it's more available now. I know in England it wasn't available at the time. The Royal Veterinary Clinic was doing their tests on donated drugs. Was the FB person in England?

Just did some quick googling. Wow, is it expensive! On Drugs.com it's over $11,000 for a single shot for humans. Of course the dose would be smaller for cats, but you'd have to get one dose and get your vet to inject the cat sized amount. That same website talks about cautions. I'd pass information onto your vet and let him/her decide if it's appropriate.

Ever thought about driving to Colorado? SRT might be cheaper there, even with hotel stays.

I used buprenorphine twice daily. It was a game changer. Again, talk to your vet about pain management. Some prefer gabapentin, though that only made Neko sleepy and didn't do much for pain. Bupe worked.

 

Hi Wendy,
Thanks for the response. I'm starting to loose it emotionally again. I don't think the Cabergoline is really working.
I started researching other options again this morning. IMRT out here is $9500. Still out of my budget plus I don't like the idea of 20days of radiation plus all the anesthesia. What is your opinion on IMRT?
I spoke with a doctor in Carlsbad (2hrs away 11K so I couldnt afford him either) but he did mention a facility in AZ that does it. Clearly he didn't give me their name/info but I'm gonna try and hunt down the facility. That's what I'm working on now. I have family in AZ plus the drive is only 6hrs.
I just feel like I waited to long for all of these tests. He was using insulin for 12months before I even got him tested for Acromegaly/IAA! His belly is very round and I'm almost postive he has arthritis now. Do you think it would be too late for SRT or IMRT considering his condition and that he would see improvement? I know that it will reduce the soft tissue and his BG levels.
In regards to your question, I'm not sure if that person was in the U.K. but probably. I was on the Acromegaly FB page for like 3hrs this morning trying to gather info.

 

Also, I just started using CBD Oil on him. Not sure if it is working but he did get on his cat wheel today for about 30seconds. It was the first time he's walked on it in months. I've already brought bupe up to my doctor. I'm sure he would prescribe it but I always worry about different meds interacting with the Cabergoline. I thought I'd try the natural route (CBD) first.
Also, I wanted to ask you about R (what is the clinical name? I've only heard people refer to it as R) I'd love some more information like is it also given twice a day like Lantus? Would I administer two separate shots in the AM and can they be given at the same time? Is is pretty easy to get vets onboard of using it with Lantus/Levimir? I casually brought it up to my vet last time but he didn't seem to gung-ho about it.

 

I would give Cabergoline a good 3 month trial before writing it off. Having said that, results are mixed with it.

I don't like the idea of IMRT for a couple of reasons. The first is the 20 days of anesthesia. A number of acrokitties develop heart issues and kidney issues. Anesthesia is hard on the kidneys and can be risky if there are heart issues. Neko had a heart block during the CT scan for her second round of SRT, and almost didn't make it out of anethesia. The second reason for not liking IMRT is that it's not as precise as SRT, and more of the surrounding tissue is radiated. The pituitary is part of the brain. The less extra radiation the better.

There have been people who have gone for radiation therapy a while after diagnosis. The sooner the better, but I wouldn't write it off if you can afford it. It's more a concern if Malachai has heart issues that preclude the anethesia. If you go that way, you might want to get an echocardiogram first to check his heart. That's what CSU got me to do. In spite of a clean echo, Neko still had the heart block.

I don't think R would be a good idea in your case. It requires a LOT more testing than you are able to do. It's a powerful tool, but can be also dangerous if you can't meet all the precautions. It is is Humulin or Novolin R, depending where you buy it. It's a short acting insulin. A lot of vets aren't keen on people using it, and rightly so. I think the best thing you can do for Malachai right now is step up the amount of testing you do with his basal insulin and get him to a good L dose. I might even think about switching to Levemir if your vet is OK with that. It seems to be a better insulin for high dose cats.

For arthritis pain, there are a couple other natural things you can try. Fish oil is an anti-inflammatory. So is Duralactin - as long as the vet is OK with it and he doesn't have milk allergies. For joints, you can try Adequan - again, talk to the vet. I found acupuncture really helped Neko.

 

Thanks again for the response.
Yes, I was somewhat concerned that I wouldnt be able to handle the R with the limited testing I do.
I just purchased Cosequin today for joint pain. Bronxs' dad recommended it.
I've also given him fish oil here and there but I feel like he gets elevated numbers after I give him it. It's that a common thing with fish oil?
I only wasn't giving it to him more in order to keep his numbers down.
I just bought a few bottles of lantus but as soon as I'm done with it, I 100% plan on switching to Levimir. Malachai started feeling the sting at 11units and I'm now at 13. He's already dealing with enough so I don't want injection time to be painful.
I'm gonna keep researching my SRT options but for now, I'll try and test more and keep increasing his Lantus.
Thanks Wendy!

 

I gave Nordic Naturals fish oil, with no issues in blood sugar.

Best of luck. It's a lot of work caring for our extra sweet acrokitties.

 

Thanks, I just went ahead and ordered some! Since I also just purchased the Cosequin this morning, https://www.amazon.com/Nutramax-Cosequin-Capsules-80-Count/dp/B000F4W02M, when should I give these to him?
He gets his Cabergoline in the PM. Should I give both the Cosequin and the Nordic Naturals in the AM? Do you think their fine to give him at the same time during AM feeding or would u spread them out a few hours?

 

I gave fish oil both AM and PM. It shouldn't interfere with the Cabergoline. Start with a lower dose of the fish oil, then work your way up.

 

But do you think it would be okay to give the fish oil AND the Cosequin at the same time? It says to sprinkle the Cosequin on his food....

 

I did that in the past. Can't see why it would be a problem.

 

Hi Wendy,
So I'm wondering if I should just change to the Levimir soon and try and let go of my 2 Lantus vials I just purchased...Malachai really isn't liking the injections anymore and I have atleast 4 months worth since I still have a few pens as well.
I just bought the Lantus from a guy on this site (it's "his" Lantus but he sells to us folks for cheap) and was wondering if there are any people who sell Levimir on this site?
I also just bought a bunch of u-100 syringes so I'm hoping Levimir uses those and not u-40.
Do you know of anyone selling here? Is the cost of Levimir about the same as Lantus?
Thanks!
Malachai also "troted" yesterday for the first time in months. I can only assume it's the CBD Oil so YAY!

 

If you check the Supply Closet Forum, there are Levemir pens for sale. Yes, it uses the same u-100 syringes. A lot of people buy their insulin on line from Canada https://rxcanada4less.com/ but you'll need your vet's prescription the first time. I don't know a lot else about it. I live in Canada where insulin is over the counter. Levemir is less than $20 more than Lantus OTC here.

Great news on Malachai moving better!

 

Good advice from Wendy (as usual). Also you could look at other suppliers in the Supply Closet forum. I just bought more Levemir pens from Alan Hamman. This is my 4th or 5th purchase from him. He sells individual pens too. No prescription needed. And, at my request he delayed shipment until there were no freezes going on.

Leo has used Prozinc, Lantus, and Levemir. He likes Levemir the best.

 

How does the dosing of Lantus compare to Levimir? Malachai is currently on 13 units (and only heading up), so Would I just continue with 13 units of Levimir or do most people lower the dose a bit to see how it will affect the BG numbers?

 

Leo has been on 3 insulins (Lantus, then Prozinc, then Levemir). Generally they are all depot insulins. So you do a reduced dose and work it back up. Maybe someone else will chime in.

There is always the possibility that Lantus is less effective on Malachai, and Levemir is more effective. So you could go down to 50% or 75% when the switch happens. It would be good to do frequent testing.

Updated: As an example, when I switched Leo from Prozinc to Levemir <<--link to Leo's thread.
Summary:
- Prozinc dose was 13.0 units
- Levemir new dose was 10.0 units

Leo's BG went high and the Levemir was soon increased to 12.0. Then his Acro kept moving, so more dose increases after that.

 

Sorry I missed this earlier. Typically we switch doses to an amount that is 70% of the existing dose when going from Lantus to Levemir. Some cats have a strong reaction to the change, so it's for safety. You may or may not eventually end up at the same dose.