12/28 Crystal - help please, vet says halt dose increases

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suki & crystal (GA)

suki & crystal (GA)

Member Since 2014
I've just had a routine check in call (27th) with my vet to update her on Crystal's progress. She is currently at 9.5u BID and still in the mid to high 300's. I told my vet that I was intending to increase her dose by 0.5u every 4-6 cycles but she says increasing the dose will not make any improvement as she has roughly the same levels as she had at around 3u BID and might actually cause her harm as it's such a large dose (?) I'm in a complete quandry as to what to do now, my vet doesn't have any experience with acromegaly, Crystal is the first case she has seen. She suggests decreasing the dose gradually to a max of 5u BID. I told her I would think about it and speak to her in two week's time, unless anything untoward happens in the meantime. Help please I'm in a complete turmoil, what should I do now?

Suki & Crystal
 
I'm just giving you a cyber hug. I just looked at your spreadsheet a few minutes ago and was wondering why you were holding off on increasing to 10, but I don't have first hand experience with acromegaly, and I'm sure others will be by to help you in dealing with your vet. Did you ask him why he said to hold off on the increases? He probably doesn't know. More people will be by to help you, today. Breathe.
 
thanks Dyana for the hugs, I could do with them. I know there will be some good advice in due course so I'm taking plenty of deep breaths while we wait. Obviously I want to keep on side with my vet but I'm not sure I can totally trust her judgement due to lack of experience with acromegaly. Not a good day so far...
Suki & Crystal
 
More hugs! I don't have any acro experience either, but i see you've been to the acro forum. Have you read through all their stickies? Printed them out for your vet? That might help her understand a little more how you want to treat Crystal.

Some times we just need to smile and nod w/ the vet, and then go and do what we feel is right for our furbabies.
 
(((Suki)))
I would (gently) ask your vet what her experience with cats diagnosed with acromegaly is. I suspect she's among the majority of vets who think that this is a far more rare condition than it actually is. As a result of the old notions, many vets give caregivers a very hard time about testing for acro and know even less about managing the condition (since if they don't have a cat tested, they don't have any idea that the problem with the BG numbers is the acro!)

The good news is that there are members here who are experienced with managing a kitty with acromegaly. Fundamentally, the approach, up to a point, is the same as managing FD. Your cat needs as much insulin as your cat needs to bring the numbers into a better range. The difference with an acro-kitty is that the tumor's production of growth hormone waxes and wanes which can have a dramatic effect on the amount of insulin Crystal needs.

I'd suggest checking with Julie and Wendy and see if they have any research articles they can point you to. You can print out the info for your vet. Maybe the, "we're in this together and here's the research I've found" approach will help her to understand what the best course of action is.
 
Hi Suki - more hugs from me. All the internal medicine vets that are expert in acromegaly say that you give the cat the insulin they need. Your goal is to try to get the numbers below renal threshold as much as possible, which is what's best to help Crystal. I wonder if it would be helpful to give your vet some spreadsheets of other acromegalic cats that have followed TR? Of the people posting here, Suzanne's Cobb got the highest (31U) before his resistance started to break and turn around. There are even examples of acrocats having to get up to 100U doses, though rare.

The other thought is to print off some of the research papers on acromegaly. I gave you a link to Dr. Niessen's 2013 paper a while ago and at the 2014 WSAVA conference, page 733 contains his latest paper in which he says high doses of insulin may be needed. The 2013 paper says most acrocats need doses of 1.5U/kg or more and ranges from 7-35U twice a day. You are following the TR protocol and home testing so you are increasing in a safe manner. I don't think you could have bypassed a good dose.
 
Hi Ann, Sienne & Wendy, thanks so much for your support (and hugs), I really appreciate it. I've had a bit of a meltdown this afternoon but feel a lot better since talking to you guys and now I'm busy reading as much as I can absorb and I intend to print off some relevant articles and SS. I think the best course of action would be to have a heart to heart with my vet and show her the evidence - I think I trust all your advice more than her's as you've all been there and have accummulated a lot of experience over the years, so in the meantime I'm going to stick to the TR protocal with an increase to 10u, probably tomorrow. Time for Crystal's dose now (and a large glass of wine for me to calm us both down!)
hugs to you all
Suki & Crystal
 
Hang in there.
Any curves you do will help the vet see that you are doing what is needed for your kitty.
Note that if the Lantus wears off early, before 12 hours, that some folks with acrocats may use short-acting R insulin in addition to the Lantus. They typically test the usefulness of R by using a small dose, then testing over the 4 hours that R works to see how it impacts the glucose levels.
 
Suki and Crystal. Hi. I have an acro kitty (Polly who also has iaa). If you look at her spreadsheet you'll notice that her numbers improved as we followed the Tight Regulation protocol. She got up to 10 U twice daily; then in early September she had the radiation therapy at Colorado State.

Julie and Wendy were our dosing gurus. And once my vet saw my spreadsheet, and saw how often I tested, he just stepped aside and said, "What you're doing works. Just keep doing it."

I suspect many vets fear cats will have hypo incidents on high levels of insulin. But we test. And test. And then test again. I'm not sure vets are used to clients who do that. I'm sure it makes them unsure.

Yes, print out the articles and take them to your vet. Mine was quoting material to me from a text book published in 2001; I politely indicated my info was more than a decade more recent. Take your spreadsheet. If you're armed with reputable information and rational with your discussions with your vet, you may find her receptive. I hope so.

Without FDMB I don't know where Polly and I would be today. This place gave me the info to truly advocate for my little girl.

Light. Lots of light for you and Crystal.

Marilyn and Polly
 
BJM, I'm not sure what you mean about R insulin, can you explain please? do I use it in conjunction with the Lantus and do I need my vet to prescribe it? Sorry, I haven't come across it before so I'm in the dark here.
Thanks Marilyn for the encouragement and I'm glad to hear that Polly is doing well. (I have a civvie called Poppydoodle!) I looked at Polly's SS and it certainly bears out the TR protocol. Unfortunately I don't think radiation therapy is an option here, nothing was mentioned when she was diagnosed and even if it was available, I probably couldn't afford it, so it's just down to doing my best for Crystal with the appropraite dosing. Tonight's PMPS was even worse, just over into the red band at 405 but she's since come down to 351 at +3 and I'll get another test in before bedtime. Thanks again to you all for your support, I am so glad I found this place.
By the way, can anyone advise me why I'm getting the little pic as well when I post?

Suki & Crystal
 
The little pic shows up just to you. It indicates which threads you have responded to. No one else sees it.

I know nothing about the R. We never used it.

No, not every acro cat has the radiation therapy. It's logistically and financially out of the question. But even before Polly's treatment, she was benefiting enormously from the TR protocol. Your Crystal will, too. Her greatest advantage? You!

Marilyn and Polly
 
"R" is what is termed "regular" insulin and is technically Humulin R or Novolin R. It is short-acting (it's duration is approx. 4 hrs) and very potent.You begin with very tiny doses because it is potent and run a curve of the R. There are several people here who are skilled in using R and I would not (and I can't underscore the NOT) use R without their guidance. It can be a very useful tool if used appropriately. It can also be incredibly dangerous if you are cavalier about it's use.

You also use R in conjunction with a longer-acting insulin. Lantus is considered your basal insulin (it's your base) whereas R is a bolus (the add-in extra insulin).

I don't have experience with R. My inclination is that you try being more aggressive with your Lantus dosing before considering the use of R. Wendy, Julie and Sandy as well as Suzanne (and probably several others who aren't immediately coming to mind) have experience with R. Ask them if it's appropriate for Crystal. (You don't need a prescription for it,)
 
What Siene said. If you find that escalating your Lantus dosing results in steep wear off around +10 or so, and onset isn't fast, then R can be used to bridge the gap.
In other words, there is an additional tool you can use, if needed.
Do follow the Tight Reg protocol as best you can.
 
Just an FYI...

Usually with R, you begin by shooting at pre-shot times and then curving the R. I would consider BJ's advice as something a bit more advanced. You need to see how the R is working before you use it later in the cycle when you would be shooting the Lantus after you shot R.
 
Hi Suki and sweet Crystal,

I have a high doser. Cobb got up to 31u twice a day before his insulin resistance started wearing off. I know Crystal has acro, what about IAA (insulin autoantibodies)? It is possible to manage acro without radiation. We decided to not test Cobb for it and just following his insulin needs, but I think we all suspect strongly that he has it.

My vet was concerned when she heard what dose Cobb was at, but she saw our SS and how much I tested and couldn't argue that the dosing increases were made safely, although aggressively, and there was nothing to indicate too much insulin. She still believes acro is fairly rare, although her colleague had an acrocat herself. Long story for another time...

I'm a little tied up at the moment, but wanted to pop in to say hi, and to tell you that you are not alone!

I'll write more later.

~Suzanne
 
Hi Suki!
Just popped in to welcome you. I wanted to tell you it was not long ago that I was mixed up because my original Vets advice and the advice of the folks on here wasn't the same. Scooter was pretty sick and on a human insulin. I took the advice of the folks here and changed his insulin and his Vet and in no time he was well again and today OTJ. I know that doubt in your heart about what to do. I have only my experience but my "littleOldMan" is here on earth because of the great advice I got here.

I can tell how much you love Crystal.

Linda
 
I suspect many, many of us have had the experience of the vet's advice not matching the advice we were getting on FDMB. I was one that had the same experience. What I can tell you is that a vet with zero experience with acro is not in a position to advise you about the dose. Especially not to reduce the dose. Crystal needs what she needs, and delaying giving her that amount doesn't help her any. I'm just being blunt - your vet doesn't have experience or education or research to back up the advice to reduce the dose.

I suspect your vet is unnerved by the situation and not knowing what to advise is giving you the most conservative approach possible. It's not helpful to you, however.

We've seen many, many cats with acro here. Suzanne is right in asking you again about getting her tested for iaa, although if cost is a concern, we can plow ahead. We do see iaa only cats, acro only cats and cats with both. The dosing strategies are slightly different, so it's helpful if we can know for certain if iaa is in the picture. The iaa test is much cheaper than the acro test. Here in the US the test is just $15 if done at the same time as the acro test.

Good for you for reading up - education is going to be your best tool. The better you understand what is happening, the more you can talk with your vet with confidence.

Sending you a big hug, Suki. It might feel like you are alone, but you aren't. We're with you and won't leave you. Hang in there.

And in the meantime, I'd increase by 0.5u every 4 cycles until you're getting regular numbers under 200. These are really high and not good for her.
 
I forgot I was going to respond to the comment about using R. It definitely has a place with high dose cats, but using R doesn't substitute for getting close to the right dose with the basal insulin, Lantus.

In the US we can buy Humulin or Novolin R (means Regular insulin) without a prescription, even though all other insulins need prescriptions. It's an inexpensive insulin that is short-acting. With a cat that has iaa it can last longer than in a cat without iaa. Punkin only had acro and it lasted a little over 3 hours in him. By 4 hours it was out of his system.

If you are interested in using it in addition to the Lantus, let us know and one of us with experience with R will make a date with you to try it out. We'd probably schedule it for your shot time at first. You would give a tiny dose - 0.1u - and then test Crystal every hour for the next 4 hours. Then we'd try it again a different day with a larger dose and see what response she gives. We'd keep repeating that process until we could see how much a dose moves her. Then you could do it on your own. But at first, we like to have someone available to check in with you just in case she has a big response to it.

Basically the idea with using R is that Lantus/Lev insulins work best with lower numbers. They can't be used to "beat down" high blood sugar. Using R can bring down the blood sugar into a lower range, allowing the L insulins to work better.

The way I used it was to be close to the right dose first with Lantus, then I used R in the second half of the cycle (after Punkin's nadir) to prevent him from rising to the next shot time, so that the next Lantus shot was starting from a lower range. I also used it to cut off bounces, achieving the same goal. I used it some at shot time but often in the later part of the cycle because it just felt more comfortable to me.

The biggest danger with using R is that you have to be careful that you don't have coinciding nadirs with both R and L at the same time. For example, let's say a cat's Lantus nadir is at +6 most of the time. Let's say the R nadir (strongest point = lowest blood sugar) is at +2. If the person were to give the R shot at +4, that could push the +6 blood sugar down lower than intended. Timing is everything with using R and you want guidance to do it safely.
 
Hugs to you, Suki. The folks posting here are the bestest, kindest, craziest cat ladies you'll ever meet. And they have a ton of experience with acro and IAA. Many vines for you and Crystal.
Liz
 
WOW, I checked in at 6 am this morning just after Crystal's shot and was amazed at all your replies offering help and advice - a big thank you to all of you for taking the time to respond to my plea, even if you don't have an acrocat - you are brilliant. I told Crystal what a lucky little girl she was to have so many people caring for her, she just gave me a long hard look as if to say, "well I'm worth it" which of course she is. Anyway, I've decided to ignore my vet's advice and this morning increased her dose to 10u. I'm also doing a curve today as I'm around all day so a good opportunity to see what's going on. I think it's a good idea to have the IAA test done and I'll get this organised, probably for the week after next. In the meantime I am continuing with the TR, increasing every 4 cycles. I must admit the thought of administering the "R" insulin scares me but I will certainly consider it if the dose increases don't work, thanks Julie for offering guidance if I go down that route.

I certainly feel in a much more positive frame of mind, mainly due to not feeling alone with this problem. I am not normally a weak and wobbly person but I was totally thrown off balance by the vet's comments yesterday. I really like my vet and would like to stick with her but I shall take it as a personal crusade to change her opinions. Today, I'm going to catch up on all the necessary reading material about acro and print off a few articles, also Cobb's SS is a good tool to go armed to the vets with.

Right, 2kg of raw chicken to mince up now... I'll post a new thread tomorrow with the curve results. Once again a heartfelt thank you to everyone from us both.

Suki & Crystal
 
Just a note - a curve today will tell you more about the previous dose level and general response pattern, due to the depot not being full at the new dose. It is still good info. You'll be able to get an idea of when onset, nadir, and upswing happen.
 
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