? 5-12 Tiffany still in the 300's - Is it too soon to start thinking about R?

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Jadi & Tiffany

Jadi & Tiffany

Member Since 2017
Hi there,

I was following the conversation with Phoebes tonight. Tiffany is at 8u twice a day and climbing. I have seen only purple for the last three days. (Better than black and red..ugh)

When is it good for me to start thinking about using Novalin R? Who are the experts? And is there info that you can direct me to on the site? @Bronx's dad @saltycat

On a side note... my vet who was apprehensive about working with a "complicated case" called tonight and we had a long chat. I really like her and want to work with her, so Tiffy will be her first Acrocat. I have a feeling that this board is educating us both!!! Tiffy also tested positive for IAA. Does that also mean I do something different? Or just keep going?

How is Bronx doing after his treatment? @Bronx's dad ??? Would love to hear details.

Thank you!!!!
 
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Did your vet give you a number for the IAA? It's usually given as a percentage.

We do have a few other people experienced with helping people with high dose conditions and R, such as @Sandy and Black Kitty

The first prerequisite to using R is a good understanding of your kitties cycles on the basis or L insulin (Lantus or Levemir). Getting enough tests in to know her Levemir onset, nadir, and duration are key. Do you think you know those yet for Tiffany? You want to use R to only pull the numbers down 100 or less points, and you want to time the use of R in the cycle so you don't get big drops when you combine the action of the L and R insulins.

Great news on your vet willing to learn and work with you. Those are the best vets.
 
No, on the number on the IAA, but I just emailed the office to see if they can get that to me.

And, the second question is also a no. Her numbers have been so weird and all over the place that it is hard to see a pattern. I think I will keep testing and staying on the current course, for now. It is good to know that there is another insulin option.

Yes, I was happy that this vet wanted to work with us. Thank you for answering when you have some much going on with your sweet kitty and dad.

Prayers for you Wendy!
 
Maybe nightly tests at different times be helpful to build the database? Like to test at different times every night for a week or so? As in tonight at +2, next night at +3, next night at +4, etc until you go thru the entire cycle? I know exactly how hard it is to get up at night and even harder to fall asleep afterwards. :blackeye:But I think this way you get bigger picture of Tiffany's nightly reactions.
 
Jadi & Tiffany said:
How is Bronx doing after his treatment? @Bronx's dad ??? Would love to hear details.
Click to expand...

So far he is about the same but was told it can take months before I see results and lower insulin needs. Colorado State University is the gold standard in the US to treat Acromegaly with radiation (SRT) but I am in NJ. The doc I used in NJ for the SRT studied at CSU and got a brand new machine which is the same type of machine CSU uses. I actually waited until the new machine was ready to go and Bronx was treated on the 1st day the machine went into service. Procedure is 5 days of radiation. Fingers crossed we see results sooner rather than later.

So sorry to hear Tiffany tested positive for IAA. It would be helpful to know what %. Doodles had a very high IAA % @Doodles & Karen and she still stops by and has a lot of experience. Already tagged members Wendy, Sandy & Julie are great to offer guidance with IAA & Acro. Wes @saltycat is on here often with Jack who has IAA and Acro and does a great job dealing with Jack who is a very unpredictable kitty.

I also found it hard to find a nadir with Bronx early on since he was just high and flat all the time. Started using R before I knew the nadirs, but began at a real low dose (0.25u) and only used it when I could closely monitor. Also, only used it at first in daytime cycles since most kitties drop lower at night while their bean is asleep and not testing. But I was told R can also affect the 2nd cycle after dosing, so that is something to keep in mind. I am probably too aggressive with R and kinda new to this game so can not offer as much advice as the pros like Sandy, Wendy, Julie & Karen but am here often, and obviously have a special interest in high dose kitties.
 
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Sorry about the IAA on top of the Acro dx. Know that you're not alone and there are members with great experience. My Doodles was IAA only at 78% (not Acro) which was diagnosed on March 16, 2016 after being a well regulated cat. He also had advanced HCM and recurrent CHF. Doodles SS is in my signature and you can see the effects IAA had and my use of R. IAA dose add another level of difficulty to managing FD. It creates the need to be aggressive to keep the anitbodies at bay but at the same time extra caution is needed.

Sometimes with high dose condition kitties we'll say to fast track and increase every 4 cycles until you see blue then you would slow down. However IMO you would need to test a few more times during each cycle to be safe especially with IAA in the picture. If you cannot test more I would only increase after 6 cycles until you see blue. Once you see blue then you would hold that dose a few extra cycles and post for guidance. This is inline with the Tight Regulation (TR) protocol as written.

With starting the use of R, you'll need someone to guide you for a bit in the beginning. I'm not on the board as frequently since the loss of Doodles in March and cannot commit to helping regularly at this time. I'm really not the best person to do so anyway. Tagging @Jill & Alex (GA) to see if she can help. Wendy has her plate full and not sure about Sandy's availability.

Keep asking questions and we'll all do what we can to help.

Below is the explanation of IAA that @Sandy and Black Kitty gave me. Black Kitty was the first kitty with IAA on the board and did go into remission. He was also IAA only.

Some very important information on IAA to keep in mind:
  • IAA is idiopathic. It just shows up spontaneously for unknown reasons.
  • IAA is self limiting and generally resolves in about a year.
  • The way it works when IAAs are present is that injected insulin first gets bound to the antibodies. Any insulin that does not get bound goes toward metabolizing sugars. How much goes to antibodies and how much goes to metabolizing sugars is anybody’s guess and a moving target
  • IAA can retard the initial rise of available insulin after an injection.
  • IAA can lead to an increase in the half-life of free (unbound) insulin in circulation because some bound insulin gets released into circulation.
  • The increase in half-life can lead to prolongation of action.
  • The release of insulin from the antibodies can happen at inopportune times
Here are some other kitties who had high dose conditions. Posting for you to take a look at the SS's but never copy dosing.

Ozy - switched 12/21/13 to a reduced dose and ended up on the same Lev dose before getting green. Ozy had just IAA.
Cobb - switched 8/6/14 to a reduced Lev dose, waa using R too. Saw a little bit of green initially then had to increase just a bit, then the IAA broke. Never hit the Lantus dose when using Levemir. The switch was done over a year after diagnosis - were the antibodies done anyway? Cobb was IAA confirmed and suspected acro though not tested.
Cyrstal - switched 1/27/15 to Lev at a reduced dose and ended up going a lot higher. R use started later. Acromegaly confirmed, IAA suspected but she couldn't get the test in Europe.
Leo - switched 4/10/12 to just 10% less Lev than the Lantus dose. Ended up going a lot higher. Leo was confirmed acromegaly and not tested for IAA - though I rather suspect it now.
Tiggy - switched 6/24/14 to 10% less but almost immediatly had to drop the dose to 1/2 the Lantus dose. Tiggy was acromegaly only.
Neko's SS switched 9/10/13 - but we were "micro dosing" at that point. IAA was broken, we started at 70% and ended up at almost the same dose as the Lantus dose.
 
Bronx's dad said:
So far he is about the same but was told it can take months before I see results and lower insulin needs. Colorado State University is the gold standard in the US to treat Acromegaly with radiation (SRT) but I am in NJ. The doc I used in NJ for the SRT studied at CSU and got a brand new machine which is the same type of machine CSU uses. I actually waited until the new machine was ready to go and Bronx was treated on the 1st day the machine went into service. Procedure is 5 days of radiation. Fingers crossed we see results sooner rather than later.

So sorry to hear Tiffany tested positive for IAA. It would be helpful to know what %. Doodles had a very high IAA % @Doodles & Karen and she still stops by and has a lot of experience. Already tagged members Wendy, Sandy & Julie are great to offer guidance with IAA & Acro. Wes @saltycat is on here often with Jack who has IAA and Acro and does a great job dealing with Jack who is a very unpredictable kitty.

I also found it hard to find a nadir with Bronx early on since he was just high and flat all the time. Started using R before I knew the nadirs, but began at a real low dose (0.25u) and only used it when I could closely monitor. Also, only used it at first in daytime cycles since most kitties drop lower at night while their bean is asleep and not testing. But I was told R can also affect the 2nd cycle after dosing, so that is something to keep in mind. I am probably too aggressive with R and kinda new to this game so can not offer as much advice as the pros like Sandy, Wendy, Julie & Karen but am here often, and obviously, have a special interest in high dose kitties.
Click to expand...

Thank you! Will keep my fingers crossed for Bronx!!! My daughter is a senior at CSU and we may be there this summer. I am starting to research the
costs and everything that would entail, so I will be following Bronx closely. It is frustrating giving all of this insulin and testing and constantly seeing the same numbers. (so R may be something I go to to help get her numbers down.)
 
Doodles & Karen said:
Sorry about the IAA on top of the Acro dx. Know that you're not alone and there are members with great experience. My Doodles was IAA only at 78% (not Acro) which was diagnosed on March 16, 2016 after being a well regulated cat. He also had advanced HCM and recurrent CHF. Doodles SS is in my signature and you can see the effects IAA had and my use of R. IAA dose add another level of difficulty to managing FD. It creates the need to be aggressive to keep the anitbodies at bay but at the same time extra caution is needed.

Sometimes with high dose condition kitties we'll say to fast track and increase every 4 cycles until you see blue then you would slow down. However IMO you would need to test a few more times during each cycle to be safe especially with IAA in the picture. If you cannot test more I would only increase after 6 cycles until you see blue. Once you see blue then you would hold that dose a few extra cycles and post for guidance. This is inline with the Tight Regulation (TR) protocol as written.

With starting the use of R, you'll need someone to guide you for a bit in the beginning. I'm not on the board as frequently since the loss of Doodles in March and cannot commit to helping regularly at this time. I'm really not the best person to do so anyway. Tagging @Jill & Alex (GA) to see if she can help. Wendy has her plate full and not sure about Sandy's availability.

Keep asking questions and we'll all do what we can to help.

Below is the explanation of IAA that @Sandy and Black Kitty gave me. Black Kitty was the first kitty with IAA on the board and did go into remission. He was also IAA only.

Some very important information on IAA to keep in mind:
  • IAA is idiopathic. It just shows up spontaneously for unknown reasons.
  • IAA is self limiting and generally resolves in about a year.
  • The way it works when IAAs are present is that injected insulin first gets bound to the antibodies. Any insulin that does not get bound goes toward metabolizing sugars. How much goes to antibodies and how much goes to metabolizing sugars is anybody’s guess and a moving target
  • IAA can retard the initial rise of available insulin after an injection.
  • IAA can lead to an increase in the half-life of free (unbound) insulin in circulation because some bound insulin gets released into circulation.
  • The increase in half-life can lead to prolongation of action.
  • The release of insulin from the antibodies can happen at inopportune times
Here are some other kitties who had high dose conditions. Posting for you to take a look at the SS's but never copy dosing.

Ozy - switched 12/21/13 to a reduced dose and ended up on the same Lev dose before getting green. Ozy had just IAA.
Cobb - switched 8/6/14 to a reduced Lev dose, waa using R too. Saw a little bit of green initially then had to increase just a bit, then the IAA broke. Never hit the Lantus dose when using Levemir. The switch was done over a year after diagnosis - were the antibodies done anyway? Cobb was IAA confirmed and suspected acro though not tested.
Cyrstal - switched 1/27/15 to Lev at a reduced dose and ended up going a lot higher. R use started later. Acromegaly confirmed, IAA suspected but she couldn't get the test in Europe.
Leo - switched 4/10/12 to just 10% less Lev than the Lantus dose. Ended up going a lot higher. Leo was confirmed acromegaly and not tested for IAA - though I rather suspect it now.
Tiggy - switched 6/24/14 to 10% less but almost immediatly had to drop the dose to 1/2 the Lantus dose. Tiggy was acromegaly only.
Neko's SS switched 9/10/13 - but we were "micro dosing" at that point. IAA was broken, we started at 70% and ended up at almost the same dose as the Lantus dose.
Click to expand...

Thank you, Karen. This is all very helpful. (Seeing why my vet is afraid of us...ugh.) But, she is willing to go forward with us.
 
Wendy&Neko said:
Did your vet give you a number for the IAA? It's usually given as a percentage.

We do have a few other people experienced with helping people with high dose conditions and R, such as @Sandy and Black Kitty

The first prerequisite to using R is a good understanding of your kitties cycles on the basis or L insulin (Lantus or Levemir). Getting enough tests in to know her Levemir onset, nadir, and duration are key. Do you think you know those yet for Tiffany? You want to use R to only pull the numbers down 100 or less points, and you want to time the use of R in the cycle so you don't get big drops when you combine the action of the L and R insulins.

Great news on your vet willing to learn and work with you. Those are the best vets.
Click to expand...

Here are the test numbers;
Insulin Growth Factor 1 -349 H ref range (12-92)
Insulin Autoantibody 63H ref range (<=20) %
 
Sorry to hear about the Acro dx. Many of us here have been through that.
Looks like you've gotten some good advice so far. My boy also has the acro/iaa combo and it has been an interesting journey to say the least. Tiffany's results are very close to Jacks.
It can be frustrating having 2 different conditions that make it hard for the insulin to work. I am still making very frequent adjustments to Jack's dose. The IAA can sputter occasionally and require some quick changes to the dose. If Tiffany continues to climb the ladder, eventually it will make more sense to consider introducing R. The R insulin can be a good tool to have, but it is no replacement for Levemir.

Good news on the vet being onboard. That is a huge relief. Jack is also my vets first high dose cat, but she has learned with me and is open to new ideas.

Jeff did a great writeup of his experience getting the treatment done at CSU for Leo.

For now, while you are still working on getting her numbers down, I would stick with just the levemir. Once you get to 10u, you can usually start increasing by a full 1u. It can be hard to see the patterns when they are stuck in higher numbers, as her numbers come down more, the patterns get easier to see. Learning their patterns is important, since Acro and especially IAA cats can drop quick if either condition acts up. Since they are usually on larger doses, there is a larger depot built up.
 
saltycat said:
Sorry to hear about the Acro dx. Many of us here have been through that.
Looks like you've gotten some good advice so far. My boy also has the acro/iaa combo and it has been an interesting journey to say the least. Tiffany's results are very close to Jacks.
It can be frustrating having 2 different conditions that make it hard for the insulin to work. I am still making very frequent adjustments to Jack's dose. The IAA can sputter occasionally and require some quick changes to the dose. If Tiffany continues to climb the ladder, eventually it will make more sense to consider introducing R. The R insulin can be a good tool to have, but it is no replacement for Levemir.

Good news on the vet being onboard. That is a huge relief. Jack is also my vets first high dose cat, but she has learned with me and is open to new ideas.

Jeff did a great writeup of his experience getting the treatment done at CSU for Leo.

For now, while you are still working on getting her numbers down, I would stick with just the levemir. Once you get to 10u, you can usually start increasing by a full 1u. It can be hard to see the patterns when they are stuck in higher numbers, as her numbers come down more, the patterns get easier to see. Learning their patterns is important, since Acro and especially IAA cats can drop quick if either condition acts up. Since they are usually on larger doses, there is a larger depot built up.
Click to expand...
saltycat said:
Sorry to hear about the Acro dx. Many of us here have been through that.
Looks like you've gotten some good advice so far. My boy also has the acro/iaa combo and it has been an interesting journey to say the least. Tiffany's results are very close to Jacks.
It can be frustrating having 2 different conditions that make it hard for the insulin to work. I am still making very frequent adjustments to Jack's dose. The IAA can sputter occasionally and require some quick changes to the dose. If Tiffany continues to climb the ladder, eventually it will make more sense to consider introducing R. The R insulin can be a good tool to have, but it is no replacement for Levemir.

Good news on the vet being onboard. That is a huge relief. Jack is also my vets first high dose cat, but she has learned with me and is open to new ideas.

Jeff did a great writeup of his experience getting the treatment done at CSU for Leo.

For now, while you are still working on getting her numbers down, I would stick with just the levemir. Once you get to 10u, you can usually start increasing by a full 1u. It can be hard to see the patterns when they are stuck in higher numbers, as her numbers come down more, the patterns get easier to see. Learning their patterns is important, since Acro and especially IAA cats can drop quick if either condition acts up. Since they are usually on larger doses, there is a larger depot built up.
Click to expand...

Thank you!! I will stay the course. Fortunately, she is eating, sleeping, purring and overall her sweet self. I have noticed for awhile that her meow has changed and mentioned that to several vets. (It makes sense now with the Acro DX.) She has started more frequently trying to clear her nose...kind of spraying snot...not to be too gross. She sometimes will shake her head and blow out. Was that something Jack was doing? Or Acrocats do?? She doesn't seem to be in pain, but seems like it irritates her.
 
There are a number of symptoms/ side effects with acro. Not all cats have the same symptoms. Acro causes excess growth hormone which causes soft tissue growth.

Jack has some stridor, his meow has turned more into a squeak and he is belly is getting bigger as the organs grow. He sneezes a lot more and snores louder then I do. They can also have joint pain, cosequin has helped Jack, adequan is a series of injections and is a step up but more expensive. If Tiffany's back legs seem a little weak, zobaline a b12 supplement is great. Jack doesn't shake his head to clear his nose, that's a first for me.
 
saltycat said:
There are a number of symptoms/ side effects with acro. Not all cats have the same symptoms. Acro causes excess growth hormone which causes soft tissue growth.

Jack has some stridor, his meow has turned more into a squeak and he is belly is getting bigger as the organs grow. He sneezes a lot more and snores louder then I do. They can also have joint pain, cosequin has helped Jack, adequan is a series of injections and is a step up but more expensive. If Tiffany's back legs seem a little weak, zobaline a b12 supplement is great. Jack doesn't shake his head to clear his nose, that's a first for me.
Click to expand...
Tiff's belly is growing too. She has a huge appetite. She is always wanting food...I do try and feed her small meals and snacks. Is that how you feed Jack? Makes me so sad for our kitties.
 
Jadi & Tiffany said:
She has a huge appetite.
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I forgot about that one. Acro hunger is something fierce. Wendy's cat liked to counter surf for muffins. Jack has eaten the plastic end caps from the tesing pokers thinking they were kibble, if it looks edible he is going for it.:facepalm: Jack gets 2 big cans of wet food a day and acts like I don't feed him.

I use an autofeeder for snacks between meals and I had a long battle with Jack since he kept breaking into it. I started the smaller more frequent meals since he has occasional pancreatitis flareups not for the acro. Smaller, more frequent meals is closer to how they eat in nature and many members here feed multiple times per day.

It breaks my heart seeing him go through it, getting older is never easy. At the end of the day, I'm so grateful for the people here who have given me the knowledge to make sure he is getting good treatment and is comfortable. Treating this disease is a marathon, not a sprint. It takes some time to see results, but I celebrate every little victory.
 
Jadi & Tiffany said:
It is frustrating giving all of this insulin and testing and constantly seeing the same numbers. (so R may be something I go to to help get her numbers down.)
Click to expand...

I started giving R before we reached an effective dose. It was a relief to finally see some improvement during the day, but while the AM cycles looked better, Chino's PM cycles started looking a lot worse. I had to stop giving R to see what impact the Lantus dose was having. Now that we're at an effective dose of Lantus, I find that the same dose of R doesn't always have the same impact on Chino's BG. When he's coming down from a bounce, it can take him from red to blue, but it only takes him from red to pink on the first cycle of a bounce.

Jadi & Tiffany said:
She has a huge appetite. She is always wanting food...
Click to expand...

I noticed that with Chino even before the diabetes diagnosis. I have to stand in the kitchen while they eat or he'll try to eat the fuzzball's food after he finishes his own - and he always finishes first, even though he gets more food. That's why I haven't been able to implement an automated feeder. Fortunately, I'm able to work from home, so I can feed four times a day instead of twice.
 
Adrian and Chino said:
I started giving R before we reached an effective dose. It was a relief to finally see some improvement during the day, but while the AM cycles looked better, Chino's PM cycles started looking a lot worse. I had to stop giving R to see what impact the Lantus dose was having. Now that we're at an effective dose of Lantus, I find that the same dose of R doesn't always have the same impact on Chino's BG. When he's coming down from a bounce, it can take him from red to blue, but it only takes him from red to pink on the first cycle of a bounce.



I noticed that with Chino even before the diabetes diagnosis. I have to stand in the kitchen while they eat or he'll try to eat the fuzzball's food after he finishes his own - and he always finishes first, even though he gets more food. That's why I haven't been able to implement an automated feeder. Fortunately, I'm able to work from home, so I can feed four times a day instead of twice.
Click to expand...

How much are you feeding Chino? Poor Tiff...the vet has always had her on a diet...I said she had a slow metabolism because I really did not think that I was over feeding her. (Now I know that it was the Acro.) I am giving her half a of a big can 3 times a day...with some small snacks, because she is always whining for food.
 
Jadi & Tiffany said:
How much are you feeding Chino?
Click to expand...

I was originally feeding ~300 calories a day (3 cans of Fancy Feast Classic Chicken Feast) but his diabetes was unregulated and he was still losing weight until recently. Now I feed between 300 and 400 calories/day, though it's usually around 350. That's one and a half 3-oz cans in the morning (150 calories) and a 5.5-oz can at night (usually around 200 calories).
 
The main reason I switched from Lantus to Levemir was because Lantus was starting to sting Bronx, 2nd reason was that I was frustrated that Lantus wasn't helping, but realized later that we just weren't at the right dose yet. Bronx doesn't flinch at all with Levemir and I like that it is supposed to have flatter curves than Lantus. Here is an old thread, but a good one, about folks who made the switch: http://www.felinediabetes.com/FDMB/threads/attention-lantus-to-levemir-users.122941/
 
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Why do you think most vets do not just start with Levemir? My vet switched Tiff from Lantus after 2 weeks with no results...which at the time, I did not understand, but looking back she made a good decision for us.
 
Angela , if you end up swtiching Phoebes, you can order your Levemir from Marks Marine Pharmacy in Canada (if you are not already doing so...) Saves money and they are great.
Adrian and Chino said:
She doesn't have to be on Levemir to use R. Some cats just respond better to Levemir than to Lantus.
Click to expand...
 
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