? 21March2020/Maxi/PMPS390/Acromegaly Treatment Questions

bambinaki

Member Since 2010
Last thread: http://www.felinediabetes.com/FDMB/...-sure-its-not-a-fur-shot.227261/#post-2545845

@Wendy&Neko

From Wendy:
Levemir is much more recent than Lantus in being used with cats. Few vets have experience with it. I used Humulin R. If you do want to try R, wait until an experienced person can be with you and help you out. There are some guidelines to learn. Equally when not to use R as well as when to use it. Initially you will have to go through more test strips. You have to learn how R works on top of how Maxi used Lantus (or Levemir if you switch). You want to avoid big drops which can cause bounces. It took me a couple years before I started using R. Mostly because there wasn't anyone around to help at the time and after I treated her, she didn't really need it.

Do take it easy on yourself. :bighug: You don't have to learn everything at once. Maxi has had acromegaly for a while and it's a slow moving condition. We do get cats that die with acromegaly, not because of it. Neko had acromegaly over 5.5 year a lot of it good quality. Keep asking questions, though maybe start another thread cause this one isn't really about smelling insulin anymore


Thank you, Wendy.

Do you think I should switch Maxi to Levemir now?

Do you think I should try R?

For help with R, would such an experienced person as one you mentioned be you?

What treatment would you want for Maxi if he were your kitty?

Is there a particular article (or 2 or 3) about treating acromegaly that you'd recommend for my vet?

I saw this:
"Indeed, should the HS be diagnosed and treated, most cats will enter a state of diabetic remission." (https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0127794#pone.0127794.ref016)

and this:

"Additionally, many acromegalic cats once effectively treated for the acromegaly, will go into diabetic remission, possibly suggesting their endocrine pancreas has not yet been subjected to overly long periods of the insulin resistance associated with acromegaly, leading to beta-cell exhaustion."

What effective treatment are they referring to? Radiation? Surgery*? Insulin? Cabergoline? Paseriotide?

This is from 2017: "Paseriotide, if a newer treatment, is probably the best second choice – again, if your vet is able to prescribe that. It does greatly reduce the GH and IGF-1 secretions, and will therefore very much slow and control the progression of the disease. In terms of the related diabetes, it should lead to very much reduced levels of or even no more insulin needed. It is however, very expensive today."(http://www.diabeticcatinternational.com/acromegaly/)

Undated article; most recent reference is 2015: "Recently pasireotide was evaluated for the medical management of HST in feline patients. Pasireotide is a novel multi-receptor ligand somatostatin analog that has been shown to improve biochemical control of human patients with HST. Somatostatins act on the pituitary gland to inhibit growth hormone release. In addition, they can act peripherally by interfering with GH receptor binding on hepatocytes and may induce apoptosis in pituitary adenomas resulting in shrinkage. The drug is given SQ every 12-24 hours or can be administered monthly with a long-acting formulation. In this study, IGF-1 levels decreased significantly with treatment and this decrease was associated with increased insulin sensitivity.10 The main adverse effects reported were gastrointestinal upset including soft voluminous stools and gas-distended intestines. Cost remains a limiting factor in the use of this drug." (https://www.mspca.org/angell_services/feline-hypersomatotropism/)

*hypophysectomy or cryohypophysectomy (//onlinelibrary.wiley.com/doi/abs/10.1111/j.1748-5827.2008.00590.x)

@Pamela & Amethyst, @Stressedcatmom, @Olive & Paula, your thoughts?

Many thanks
 
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Do you think I should switch Maxi to Levemir now?
I think this is your decision. Maxi is still on less than 5 units, only you can say if the Lantus is bothering him. Like I said, it doesn't for all cats. Another consideration is how close to the end of a vial/set of pens you are. I think most people have been happy when they did switch, so you might want to consider it at some point. The question is the timing.
Do you think I should try R?

For help with R, would such an experienced person as one you mentioned be you?
Let me talk to some others about timing and if for R. I am one of the people, but there are a few others here who have used it. It is a commitment in testing. The first several times you use R, you need to test at preshot plus the 4 hours after that. So you would want to pick a time when that works for you. Given the world situation, not everyone has the time. Which time zone are you in and when is your PS time? That can determine who helps as well.
What treatment would you want for Maxi if he were your kitty?
Minimally get him into better numbers ASAP. Since he has CKD stage 1 and acromegaly can be hard on kidneys, getting him to be under renal threshold should be job 1. Whether you do treatment depends on your ability to pay for it and to travel. This time in the world is not the time to travel. Your vet may know if there is SRT or radiation therapy near you. I would not go to New York right now, so that rules out hypophysectomy/surgery. You can always start cabergoline in the interim. And stop it or not as things calm down and more options appear.

I don't know of any one article that describes treatment options, without some bias in it. The treatments in your quotes are hypophysectomy or surgical removal of the pituitary. The authors are from the Royal Veterinary Clinic (London) where the surgery is performed. Getting the surgery done by skilled surgeons is probably the gold standard treatment. And again, requires travel. And of course they'd recommend it. Forgot to mention, since it is brain surgery going through the roof of the mouth, there is some risk to the surgery. That's why it should only be considered if done by a skilled surgeon. I heard of another place trying it and of the two cat that went there, one had bleeding issues, the second not all the tumour was removed, so treatment didn't work and the person ultimately went for SRT.

The key phrase for pasireotide "Cost remains a limiting factor in the use of this drug." It is outrageously expensive. The only way the trials could be done in the UK (at RVC) was because Novartis donated the drug for the trial. They actually did two trials, one with Signifor (pasireotide) daily shots, another with Signafor LAR (long acting) or once a month dose. The other issue RVC had at the time of the trial as the drug was not approved for the UK. I did get my vet to explore Signafor at one point. She could not find a place to source it, and couldn't even get a quote on the long acting version, even though it had been approved for use in Canada. That was a few years ago. When I asked one of the leading acro researchers in North America if she had experience with it her answer was she couldn't find a caregiver willing to pay for it. Here is a post on it - monthly cost about $1000. Yup, that's a thousand bucks. The RVC trial had better success with the long acting version, which costs even more. We've had a few vets of caregivers here read the literature and figure pasireotide is the solution, without realizing the cost.
 
I was up half the night reading. It seems that acromegaly is very serious and terminal.

I can see that Maxi does have growth on his little face. I'm so very sad. I love him so much and in addition to that he is a piece of my parents, both of whom I've lost. Maxi was their kitty. It's like I have a living part of them still with me in Maxi.

I think this is your decision. Maxi is still on less than 5 units, only you can say if the Lantus is bothering him. Like I said, it doesn't for all cats. Another consideration is how close to the end of a vial/set of pens you are. I think most people have been happy when they did switch, so you might want to consider it at some point. The question is the timing.

I don't know what to base my decision on. Is Levemir more effective than Lantus? Is the only reason to change from Lantus to Levemir the stinging?

Let me talk to some others about timing and if for R. I am one of the people, but there are a few others here who have used it. It is a commitment in testing. The first several times you use R, you need to test at preshot plus the 4 hours after that. So you would want to pick a time when that works for you. Given the world situation, not everyone has the time. Which time zone are you in and when is your PS time? That can determine who helps as well.

I'm working from home now, so I can do it. But what happens when I go back to working away from home? By then I wouldn't need the +4 tests, right?

Minimally get him into better numbers ASAP. Since he has CKD stage 1 and acromegaly can be hard on kidneys, getting him to be under renal threshold should be job 1. Whether you do treatment depends on your ability to pay for it and to travel. This time in the world is not the time to travel. Your vet may know if there is SRT or radiation therapy near you. I would not go to New York right now, so that rules out hypophysectomy/surgery. You can always start cabergoline in the interim. And stop it or not as things calm down and more options appear.

I won't do surgery or radiation. I do want to put Maxi through that. It would be very hard on him. Aside from that, I can't afford it.
I know you're uncomfortable answering questions like these, but you are very well informed and I'd appreciate your input, so instead of asking "Should I start Maxi on cabergoline?" I'll ask "Would you start cabergoline if Maxi were your cat?"

Thank you
 
Is Levemir more effective than Lantus? Is the only reason to change from Lantus to Levemir the stinging?
It's another one of those ECID things. For many, but not all cats, Levemir seems to produce flatter curves. It did for Neko. I didn't have to test as much when she was on Lev because she didn't drop as fast. She got better duration on it. Not all cats do. But of the cats that have switched to Lev, I think I remember one that switched back.
I'm working from home now, so I can do it. But what happens when I go back to working away from home? By then I wouldn't need the +4 tests, right?
R is an in an out insulin. Again Neko didn't like to follow the rules, but for most cats it was in and out in four hours. It's used to bring down the numbers, no more than 100 points over that time period. If you aren't around to monitor, you just don't give R. If in doubt, you just don't give it. Levemir onsets typically at +4 and nadir around +8, which makes using R at preshot good timing. It takes the numbers down a bit in time for the Levemir to start doing it's work, but with lower numbers. And yes, once you've figured out how much R to give when, and know how R's onset, nadir and duration, you can cut back on the number of tests.
so instead of asking "Should I start Maxi on cabergoline?" I'll ask "Would you start cabergoline if Maxi were your cat?"
Knowing what I know, I would do what I could afford to reduce or delay the impacts of the growth hormone. Cabergoline does not impact the IGF-1 output, but the effects of growth hormone are the worst side effects and that is what it does impact. Cabergoline was available after my time, but I do hear from others that there kitty did so much better with cabergoline. @Olive & Paula is a great example.
 
I can only say we switched to Levemir not because of any discomfort it was causing Luci, but because she was such a bouncer...she was typically day after day bouncing high/low, low/high...but getting her to level off anywhere was proving to be impossible. So we switched a year ago July...she seems to be doing better on Lev - but only because of the bouncing...which if you look at her SS - she rarely goes into the pinks and reds...and prior to that she was what I'd call a frequent flyer. If I can keep her under 200 it's a good day.

I hope your Max will respond soon to Lantus or Lev if you decide to switch ...
 
Hi there :cool:

Like Wendy said, all things considered the first priority is to get Maxis numbers below the renal threshold.

I recommend you do an R trial, so that you learn how Maxi reacts. You have an advantage in that unlike myself you do not have to learn how Maxi responds to R under the duress of a ketone crisis.

I’m happy to guide you through the process when you are ready.

Any idea when the IAA result will be back?
 
It's another one of those ECID things. For many, but not all cats, Levemir seems to produce flatter curves. It did for Neko. I didn't have to test as much when she was on Lev because she didn't drop as fast. She got better duration on it. Not all cats do. But of the cats that have switched to Lev, I think I remember one that switched back.

R is an in an out insulin. Again Neko didn't like to follow the rules, but for most cats it was in and out in four hours. It's used to bring down the numbers, no more than 100 points over that time period. If you aren't around to monitor, you just don't give R. If in doubt, you just don't give it. Levemir onsets typically at +4 and nadir around +8, which makes using R at preshot good timing. It takes the numbers down a bit in time for the Levemir to start doing it's work, but with lower numbers. And yes, once you've figured out how much R to give when, and know how R's onset, nadir and duration, you can cut back on the number of tests.

Knowing what I know, I would do what I could afford to reduce or delay the impacts of the growth hormone. Cabergoline does not impact the IGF-1 output, but the effects of growth hormone are the worst side effects and that is what it does impact. Cabergoline was available after my time, but I do hear from others that there kitty did so much better with cabergoline. @Olive & Paula is a great example.


Thank you, Wendy. I have asked Olive&Paula about it.
 
Hi there :cool:

Like Wendy said, all things considered the first priority is to get Maxis numbers below the renal threshold.

I recommend you do an R trial, so that you learn how Maxi reacts. You have an advantage in that unlike myself you do not have to learn how Maxi responds to R under the duress of a ketone crisis.

I’m happy to guide you through the process when you are ready.

Any idea when the IAA result will be back?

Thank you for your reply, Sandy, and thank you for offering to guide me with R.

You said the first priority is to get Maxi's numbers below the renal threshold. When I have asked what the threshold is, I've been told it's different for every cat. So, how do I get Maxi's numbers below the renal threshold?

I don't know when the IAA results will be back. They will come from the same lab in Michigan that did the test that diagnosed acromegaly. So, any action should wait until that result, right?
 
Sandy is also eastern time, so will be able to help you in the mornings. You might want to look at her BK's spreadsheet. She has a tab called R scale. Over time what you want to do is build a table like that telling you how much R you shoot, when, and at what blood sugar value. And as that tab showed, it can change over time. Note that the amounts are really ECID. I never shot more than 0.5 units of R.
 
Sandy is also eastern time, so will be able to help you in the mornings. You might want to look at her BK's spreadsheet. She has a tab called R scale. Over time what you want to do is build a table like that telling you how much R you shoot, when, and at what blood sugar value. And as that tab showed, it can change over time. Note that the amounts are really ECID. I never shot more than 0.5 units of R.

Thanks, Wendy.

I looked at BK's ss, and saw only 4 days of R scales.
I don't understand it. Why is the scale different for each of the 4 days?
 
R scales don't change every day. You keep the same R scales until something changes in the kitty, and you have to revise them. The dates in the R scale are the dates they got revised. My R scale was much simpler. In higher doses (above 3 units), 0.5 units if above 300, and 0.25 units if above 200. In lower doses the amount of R dropped. At one point it was 0.1 unit or drops.
 
R scales don't change every day. You keep the same R scales until something changes in the kitty, and you have to revise them. The dates in the R scale are the dates they got revised. My R scale was much simpler. In higher doses (above 3 units), 0.5 units if above 300, and 0.25 units if above 200. In lower doses the amount of R dropped. At one point it was 0.1 unit or drops.

Wendy, please pardon my brain. I still don't understand.
I now understand why there are only 4 scales (thanks for explaining).
But I don't get why the dose of R changes. Why on one day (or during one period) would the dose be 5 units if the BG is in the 400s, but another time the dose would be 6 units with the same BG of 400s?
 
Why on one day (or during one period) would the dose be 5 units if the BG is in the 400s, but another time the dose would be 6 units with the same BG of 400s?
The goal with R is to lower the blood glucose around 100 points or less, no more. If things change in the cat so that a certain dose of R is either too effective or not effective enough, you change the R dose. Changes in the pituitary tumour, the antibodies (if present), other causes of resistance such as glucose toxicity, hyperthyroidism, internal inflammation/infection, (eg. bad teeth), can all impact blood sugar needs.
 
The goal with R is to lower the blood glucose around 100 points or less, no more. If things change in the cat so that a certain dose of R is either too effective or not effective enough, you change the R dose. Changes in the pituitary tumour, the antibodies (if present), other causes of resistance such as glucose toxicity, hyperthyroidism, internal inflammation/infection, (eg. bad teeth), can all impact blood sugar needs.

Aha!
Thank you
 
. When I have asked what the threshold is, I've been told it's different for every cat. So, how do I get Maxi's numbers below the renal threshold?
Renal threshold is the concentration of glucose in the blood the kidneys will tolerate before removing it into the urine. for diabetic cats its generally a BG in the neighborhood of 200. Like Judy pointed out testing with Diastix can give you some idea. Its something you can figure out over time.
I don't know when the IAA results will be back. They will come from the same lab in Michigan that did the test that diagnosed acromegaly. So, any action should wait until that result, right?
No need to wait for the IAA results to start learning about how R works with Maxi.
But I don't get why the dose of R changes. Why on one day (or during one period) would the dose be 5 units if the BG is in the 400s, but another time the dose would be 6 units with the same BG of 400s?
Looking at BKs ss one must consider the context. We basically had to wing it.
We started using R because we were facing his second hospitalization for DKA (the first 5 months on insulin he was hospitalized twice for DKA) It seemed the ketone "wolves" were always at the door, in spite of a 5u Lantus dose. We figured he must be getting close to a good dose but BK didn't see green for the first 6 months- it lasted for about 3 hours not to be seen again for another 5 weeks or so. Everything pointed to Acro, so we had him tested. To every ones shock it came back negative. At that time the only other high dose condition to check for was Cushings disease, which we did. It also came back negative. One of the Lantus gurus here back then who introduced me to and helped me learn R had heard of a rare condition called IAA and so BK became the first FDMB kitty to test for IAA. The result was extreme insulin resistance. So at about 9 months in we finally found the reason! But now what? No one had any knowledge much less experience specific to feline IAA to share.
One thing we did know was that IAA is idiopathic (just shows up one day out of nowhere) and it is self limiting lasting about a year, which is good but when exactly and how abruptly it will break is unknown so one must always be on the lookout for signals and prepared for rapid changes. In light of all that rather than continuing up the Lantus dosing ladder beyond 13.5u I gave a good bit of R. The concern was that if the depot got any larger and insulin sensitivity returned we would be in trouble. It turned out to be the right move. When the IAA started to break he was getting upto 10u R on top of 13.5u Lantus each cycle - Being that R is in and out I was able to abruptly reduce his overall dose by 10u with no worries about depot action.
Regarding my R scales I had more of them but lost them. I cant remember exactly when but I had them on my work laptop (I worked from home) and one day I fired it up and got the "black screen of death" Nothing could be retrieved. The ones on his ss I have because I would print them out and tape them at eye level on the shelf I kept syringes and supplies and those are the few I found lying about.

R dose will change according to all the variables that affect insulin needs of a high dose kitty, therefore, for safety sake, the scale must change.
 
The concern was that if the depot got any larger and insulin sensitivity returned we would be in trouble. It turned out to be the right move. When the IAA started to break he was getting upto 10u R on top of 13.5u Lantus each cycle - Being that R is in and out I was able to abruptly reduce his overall dose by 10u with no worries about depot action.
Wow! That is quite a story. I hope our story ends the same way! :otj:

So if a kitty is IAA, is there a max dose of Lantus/Levemir that is recommended before starting R? (what does R stand for anyways?)
 
Renal threshold is the concentration of glucose in the blood the kidneys will tolerate before removing it into the urine. for diabetic cats its generally a BG in the neighborhood of 200. Like Judy pointed out testing with Diastix can give you some idea. Its something you can figure out over time.

No need to wait for the IAA results to start learning about how R works with Maxi.

Looking at BKs ss one must consider the context. We basically had to wing it.
We started using R because we were facing his second hospitalization for DKA (the first 5 months on insulin he was hospitalized twice for DKA) It seemed the ketone "wolves" were always at the door, in spite of a 5u Lantus dose. We figured he must be getting close to a good dose but BK didn't see green for the first 6 months- it lasted for about 3 hours not to be seen again for another 5 weeks or so. Everything pointed to Acro, so we had him tested. To every ones shock it came back negative. At that time the only other high dose condition to check for was Cushings disease, which we did. It also came back negative. One of the Lantus gurus here back then who introduced me to and helped me learn R had heard of a rare condition called IAA and so BK became the first FDMB kitty to test for IAA. The result was extreme insulin resistance. So at about 9 months in we finally found the reason! But now what? No one had any knowledge much less experience specific to feline IAA to share.
One thing we did know was that IAA is idiopathic (just shows up one day out of nowhere) and it is self limiting lasting about a year, which is good but when exactly and how abruptly it will break is unknown so one must always be on the lookout for signals and prepared for rapid changes. In light of all that rather than continuing up the Lantus dosing ladder beyond 13.5u I gave a good bit of R. The concern was that if the depot got any larger and insulin sensitivity returned we would be in trouble. It turned out to be the right move. When the IAA started to break he was getting upto 10u R on top of 13.5u Lantus each cycle - Being that R is in and out I was able to abruptly reduce his overall dose by 10u with no worries about depot action.
Regarding my R scales I had more of them but lost them. I cant remember exactly when but I had them on my work laptop (I worked from home) and one day I fired it up and got the "black screen of death" Nothing could be retrieved. The ones on his ss I have because I would print them out and tape them at eye level on the shelf I kept syringes and supplies and those are the few I found lying about.

R dose will change according to all the variables that affect insulin needs of a high dose kitty, therefore, for safety sake, the scale must change.


Thank you, Sandy.

Did those high doses of Lantus not bother (sting) BK?

How the heck did you get that much insulin into him? Maxi is a very good boy, and I can get 5 units into him, but if we have to go up as high as BK, I won't know how to do it other than pin him down, and I really don't want to do that.

Should I ask the vet for R immediately? What kind of R and what dose?

Please help me comprehend what you all (Sandy and @Wendy&Neko and @Judy and Freckles) have said above.
Please let me know if what I have listed below is correct.

-My first priority is to get Maxi's glucose numbers below his renal threshold.
-Maxi's renal threshold is unique, so you can't tell me what glucose number his renal threshold is.
-I learn what his renal threshold is by urine testing with Diastix. When the test shows glucose in the urine, he's over his threshold.
-The main purpose of adding R is to get his numbers below his renal threshold.
Here I get stuck. With Maxi's high numbers all the time, glucose is (must be) in his urine all the time. Even if I use R and it drops his numbers 100 (maximum) points below what the numbers would be with Lantus alone, his numbers still might be over his renal threshold, and if they're always over his threshold, I'll never know what his threshold is.
-But in spite of this, I should keep giving more and more insulin (Lantus and R) in the hope of bringing his glucose level into the normal range.

Thanks
 
I think that's a good summary. You might just want to focus on getting Maxi under 200 to start. It's good to have the big picture in mind but can be overwhelming too. Small steps will get you there safely.

Thanks, Judy.

I apologize if you've already told me this. (My head is spinning. Between Maxi and my new online job [I'm a teacher], I'm frazzled.) Did you switch Freckles to Levemir because of Lantus stinging?

Re. your question above about R (Regular), I get the impression that you could try now with Freckles since she's at 10 units of Levemir. Seems that Sandy thinks I could try it with Maxi, who tomorrow will increase to 5 units of Lantus.
 
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Yes, it's a crazy time in the world right now, that's for sure!

Did you switch Freckles to Levemir because of Lantus stinging?
Yes, Lantus was stinging periodically - not all the time, but enough times that I was giving too many fur shots. The other reason is because Freckles is IAA, there was a chance that a different formulation of insulin might have confused the antibodies - didn't work though.

I get the impression that you could try now with Freckles since she's at 10 units of Levemir.
Two things with trying R: 1 I'm rarely around at +4 - hubby would have to test and there are many days that he's not around - especially this time of year (we'll be starting calving soon). The second is that Freckles doesn't really have super high numbers - she's pretty flat and usually around the 200-250 mark. I don't want to hijack your thread, so I'll just follow your conversation and see what experience members think.
 
Yes, it's a crazy time in the world right now, that's for sure!


Yes, Lantus was stinging periodically - not all the time, but enough times that I was giving too many fur shots. The other reason is because Freckles is IAA, there was a chance that a different formulation of insulin might have confused the antibodies - didn't work though.

Two things with trying R: 1 I'm rarely around at +4 - hubby would have to test and there are many days that he's not around - especially this time of year (we'll be starting calving soon). The second is that Freckles doesn't really have super high numbers - she's pretty flat and usually around the 200-250 mark. I don't want to hijack your thread, so I'll just follow your conversation and see what experience members think.

Not hijacking. More information is helpful. I'd like to know the consensus on what the right point to start R is, too.
 
There is no right dose at which to start R. You use R to try to bring down numbers that are otherwise being stubborn about coming down. R can also be used in the case of a cat that is ketone prone where you need to get more insulin in, but not by increasing the Lantus/Levemir too fast. It's sort of like a bridge to bring numbers down until you get a better basal dose.

I have also seen R used a couple times because someone didn't want to get on too high a dose of Lantus or Levemir. In one case because the R cost so much less, the other because the caregiver was trying to reduce the number of shots given at once. And it's a nice tool to have if for some reason you do a furshot. Speaking from experience here. :oops:

You can talk to the vet about using R, but it sounds like your vet was already on board with the concept. I believe you don't need a prescription for it in the US. Not sure, but I think you can pick up a vial at Walmart for under $30 for Humulin R. Don't quote me on that, it was something like $25 OTC in Canada.
 
Did those high doses of Lantus not bother (sting) BK
Thankfully no.
How the heck did you get that much insulin into him? Maxi is a very good boy, and I can get 5 units into him, but if we have to go up as high as BK, I won't know how to do it other than pin him down, and I really don't want to do that.
When I got into double digit doses I started having difficulty. I had to shoot BK while he had his head down eating. I wasn’t fast enough with the high doses and my hands were not steady due to (at that time undiagnosed) Parkinson’s. So I split the Lantus dose into 2 syringes and that did the trick.
 
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