2/25 CRYSTAL - dosing advice, continued

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suki & crystal (GA)

Member Since 2014
@Suzanne & Cobb(GA)
Hi Suzanne, on one of my previous posts when we were talking about dose increases you said:

Hi Suki,

I agree with going up by 2 units. One thing to note, that is the max you'll ever increase by. You won't bump up by 3 units ever.

@julie & punkin (ga)
and then Julie said in yesterday's post:

I do think it helps keep the dose down to be aggressive with dosing like you're doing - every 4 cycles. You can increase by larger increments if you want - think 10%-25% depending on how close you are to a good dose.

So, a bit of a dilemma for me from 2 of my trusted experienced acro mums, do I go more than a 2u increase or not at next planned increase (tomorrow PM)? Does anyone else have views? I just want to keep her within safe increases, which are currently every 4 cycles. Good figures so far today, all yellows, ahead of tonight's R trial.

Suki & Crystal
 
Here's your condo from yesterday:

Suzanne stopped increasing at 31U, so she never got to the point where 10% would be anything more than 2 units. And at 31 units, Cobb was seeing a lot of green and blue so she wasn't looking for that big breakthrough. You are still trying to get on top of the resistance and the lowest Crystal has given is a yellow. I would follow Julie's advice and go for the bigger increases, which would be 3 or 4 units for the next increase. Did you take a look at Grayson's spreadsheet that I included yesterday? Lu-Ann did larger increases and used R.

See ya later today for the next installment of R.
 
Hi Wendy, thanks for confirming the dose increases can be 3-4u and your logic behind it. Yes I did have a look at Grayson's chart, looks like he didn't start the R until he was at 48u and I can see that she did some 4u increases. thanks for posting it for me, I will study it in depth after tonight.
 
Another possibility for the R dosing is after the Lev nadir - it doesn't HAVE to be at preshot. it can be, but as long as we are mindful of coinciding nadirs between the Lev and the R, it's ok to use a different timing. Not sure if that helps your dilemma on when to do the next R, but thought i'd mention it as an option.

I love seeing Sandy's stats - those are encouraging. Slowly but surely - like the reliable turtle - Crystal is making progress.

Sleep well!
 
Hi Suki, that's just what I was told when we were on our way up. But Wendy is right. When I stopped at 32u, Cobb was seeing better numbers and we never addressed the 10% increase after that. Grayson definitely got to higher doses than Cobb. His spreadsheet is a great example to study!

I'm wondering...just thinking out loud. I wonder what the response would be if you have R at the mid cycle...maybe at +6 or +7. Then maybe your preshot could be lower and you could give half the initial dose, and it might have Crystal treading in lower numbers until the second dose of Lev kicks in. I only suggest that since it does look like Crystal has a definite nadir right now. Thoughts anyone?? Again...just thinking out loud.
 
Suzanne, could you explain what you mean by "you could give half the initial dose. . . until the second dose of Lev kicks in." I'm not sure what you're meaning there.
 
Suzanne, could you explain what you mean by "you could give half the initial dose. . . until the second dose of Lev kicks in." I'm not sure what you're meaning there.

So, hypothetically...

If, at +6, 1u of R is given, that might bring Crystal down for her preshot by working in conjunction with the Lev. Then give the regular dose of Lev at PS but only .5u of R, not another "whole" dose of R. Maybe the half dose of R would be enough to keep that hypothetical lower preshot BG from going back up until the Lev onset for that cycle.

Sorry, I should have rephrased the "second dose of Lev" part. Only one dose, just referring to the second dose in the 24 hour time frame. Fast typing on my part...I should read back through my posts before I hit reply.

Does that make more sense?
 
From the other thread.
A thought: given that her numbers may slightly rise at the end of a cycle, an option for the R would be to give it around +10 to mitigate that rise a bit.
 
The goal is to use R to make Ls job easier.
The trick is to do so and avoid triggering a bounce.
Here is BKs first green - along with the aftermath. . .a 3 day bounce which included visiting the 5th floor :banghead:
I wish I could say it was the only time (sigh)
(note - at the time he had not yet tested for HD conditions)

BK first green - ss section.JPG

Although BKs 2 DKA episodes were behind him, they were still visible in the rear view mirror.
I had to be super aggressive in order to avoid inviting ketone formation - that required a different strategy - a difference to keep in mind when looking at BKs ss..

However I also wanted to see green, dammit! - it had been
6 months for cryin' out loud <<<< watch out for this pitfall ;) .

Best to proceed methodically and with caution when shooting high doses. The blues and greens will come. Pushing too hard (as in the above example) results in time wasted waiting for the fallout to clear - and more frustration. I think for now using the occasional shot of R to nudge things in the right direction until you reach an optimum L dose is all she will need. After that R can be used as the ebb and flow of acro may call for. That's when you want to have a good handle on how much R to use and when.

Regarding timing, along with nadir L onset time is an important factor in deciding where in a cycle to shoot R - that's when L comes off the blocks, hours after it is shot. So determining L onset as well as R nadir will help you in timing the R shot so that the maximum action has brought numbers down 50-100 points when the baton gets passed to L.

My $0.02-
Keep doing what you are doing - as long as there is not a crisis and overall progress can be seen.
While going up the L dosing ladder, at the next opportunity try 1.5uR and continue to increase R by 0.5u each trial until you see the right amount of action. Also, consider trying it on another cycle besides the 3rd cycle of a dose - like the 4th or even the 1st. The same dose may have a different effect. As your R data increases you will instinctively know how much to use and when.

FWIW - 3 months in you are in a much better place with Crystal than I was with BK. . . .:cool:


 
@Sandy and Black Kitty - just wanted to thank you for your very clear explanation on the use of R and for your words of encouragement, I am definately in need of the latter! Having been there you know exactly the frustrations when things don't go the way you plan, but every cat has it's own agenda and Crystal is no exception. I think that's a good point you make about varying the timing in relation to the cycles and it's certainly worth a go to see what reaction we get. Unfortunately, my first chance to do another R trial would be either Tuesday or Wednesday as I'm really busy all weekend with house guests and a hospital appointment on Monday.

Regarding nadir and onset, I know roughly when her nadir is, although it's not consistent, but I'm not sure about the onset of Lev. Can you look at her SS please and give me an example for a particular day so that I understand when the onset is happening, some cycles are just very flat and there is no real discernable difference. For ease of reference I've put her proposed dose increases (by 3u) on the SS so I can work out what cycle she would be on. Thanks as ever Sandy for your invaluable experience and patience.

Suki & Crystal
 
Hi Suki - Good to see you again over here!

I'm going to offer up my perspective of your numbers, and what I would do if I was holding the syringes.

I'm encouraged that you're seeing yellows. If you've looked at Grayson's SS, you know he "swam in a sea of pinks" for a couple months. Once we knew the "devil we were fighting" (Acro/IAA), it was much easier to push on aggressively. Once we finally switched over to Lev, we climbed the dosing ladder pretty quickly... I felt like we HAD to, as he had had issues with ketones, and I didn't want to risk DKA. With an IAA kitty, the key is to stay on top of the resistance. Let up a little and it will run over you and leave you in the dust. I consistently increased 20-25%. If you think about "normal diabetic kitties" we do 25-50% increases. I would stick with a 20-25% as long as you're still seeing numbers OVER 150 at nadir. At that point, I would be a little more conservative. (I think my heart stopped the first time I even SAW a blue!) I also increased every 3 days or so. Others, like Heather's Sneakers, took longer to settle in to a dose. She typically held the dose for a week. That part really depends on Crystal. You're going to have to take some cues from her to see how quickly you increase.

I was reluctant to use R at first. I eventually used it, and for Grayson, he pretty much didn't move for anything less than 3u... meanwhile others will hypo on barely a sniff. You're doing great by testing frequently after dosing R. In my opinion, since you're already seeing yellows, I would prefer to dose the Levemir aggressively and see what it will do, without the R. Some people will use the R on a sliding scale. Like >400; 1u; >350; .75; >300; .5u. Others will push it and even use R when preshot is <200. I don't believe I used R under 300 - and if I did, it was a lower dose. If you continue to use R, I would only use it at preshot. Lev's onset is usually about 4 hrs... by that time, the Lev has moved the BG down for the baseline. Grayson NORMALLY nadired about +9-+11. You don't want the two insulins to nadir at the same time, which is why I don't encourage a mid-cycle R.

With Acros, we often say "blues are an Acro's greens". We don't always push to have the low numbers, so in my mind, we're trying to reach somewhere in the 100-150 range during a cycle. If we can do better than that, great; but the goal is getting down to the blues.

You're still in the "IHOP" zone - in the US that's the International House of Pancakes. Grayson's cycles were very flat - like a pancake. Your numbers look a lot like his. It wasn't until about October 2012 that we started really seeing movement. Unfortunately, that meant we were climbing - up to the 50u max I shot, and 3u R. Fortunately that was when he really started responding (I didn't want to buy an even BIGGER syringe!). Other Acros have shot even higher doses. Frankly, that scares me... but then again, so did G's dose - particularly when you see other kitties dropping like a brick on .5u! While Grayson was guzzling insulin, my kitty Herb was microdosing... and Libby's Hershey came for a weekend and taught me about low numbers... that I'd NEVER seen with Grayson.

It all boils down to YOUR kitty and how Crystal responds. Right now I would continue to chase down the BGs with the Lev.
 
@Grayson & Lu
Hi Lu-Ann, glad to hear from you again, it's been a while. I just wanted to reply quickly to thank you for taking the time to comment on Crystal's progress so far. I am always happy to have thoughts from people that have gone before and have experience first hand. There is a lot of good info in just this post and I have already bookmarked Grayson's SS so that I can use it as a reference when needed. We don't know whether Crystal has IAA or not as the test is not available here in France but going by her resistance so far to insulin, there seems a very good likelihood she has it, along with agromegaly. She is due a dose increase tonight so I'll try a 5u increase and see how she does on that. I must admit these high doses terrify me, but if it works, all to the good. So for the moment, as you and Sandy both suggest, I'll concentrate more on trying to find a good Lev dose with perhaps 1 or 2 trys a week adding the R into the mix.

I like your comment about "blues are an acro's greens" - that is all I am really hoping for, a steady and safe stay in the blues would be great and I would settle for that quite happily. I don't think there is the remotest chance she will ever go OTJ. I hope you will look in again on our progress.

Suki & Crystal
 
When I got Grayson's test results, the IAA was no surprise - Acro was (he was down 1/3 of his body weight). I think, if you're feeding the right foods, and giving good insulin, and they STILL need >5u, there's some level of resistance in place. Not all have the fierce resistance, and I wouldn't really push someone to have the test. It's usually fairly obvious. Insulin resistance is one of the characteristics of Acromegaly, so if you've already got that dx, it's pretty much a moot point.

There are several Acros who have gone OTJ - both with AND without treatment... so it's not totally out of the question. Likewise, we've had several that have broken through the resistance and come down to a normal dose - it all depends on the tumor. It can die back on its own in some cases. I remember saying when G reduced down to 10u - that if he just stayed there, we were good! When he got down to the lower doses, his appetite reduced as well. That was as much of a savings as the insulin costs! I felt like I'd won the lottery :) Once his food costs started coming down, I was able to transition my other kitties and 2 pups to canned food.

See what the increase gives you, and let it settle in for a couple of days. The first few cycles/days, you'll still be filling the shed, so it may be 3-4 days before you start to see a response. Don't be disappointed if there's not much immediate response. And again, if your schedule changes that you're not able to be around to test, conservative is always an option. Just remember - dose changes for an acro are more like steering a barge than a motor boat.

If I'm not checking in regularly, please shoot me a PM, as that will pop up in my e-mail.

Lu-Ann
 
Another thought... not sure if this is an option for you. Stiin Neilsson at RVC in London is one of, if not the, most recognized acro researcher. Though they've got an FD remission clinic, he also works with acros. My friend Amanda's Acro-kitty Betty was in a drug trial there. She went into remission. Drug was Pasireotide. Not sure how available or accessible that would be for you, but I saw you have a UK connection. You never know!
 
We've talked about the neighboring country options with Suki, but she doesn't feel like it's an option to take Crystal to either London or Italy.

Lots of good info in your post, Lu. and it's always great to see you!
 
Hi Julie! Good to see you too!

As we both know, travel for treatment can be challenging and costs quickly add up (BTW - Grayson's credit card is STILL getting quite a workout!) That's why I suggested the drug, if it's an option. Amanda was in the London area, so it wasn't a travel issue, but Betty was older, so radiation and surgery weren't really good options for her. But if the drug could be an option, I was thinking it may be able to be done through her local vet with BW being sent to RVC. As my dad used to say, "You can make that president scream when you stretch a dollar!" :) There's almost always multiple options, and economics & travel always have to be a consideration when it's my decision.
 
Hi Lu-Ann and Julie
I have already made contact with the RVC in London, primarily to get their views on high doses and also whether they could do an IAA test for me. Unfortunately, didn't get to speak to the great man himself, one of his PhD students answered my queries. I did some checking with them also but as far as I could make out Crystal would not be a candidate for a trial anyway as they like to get them in early stages and certainly no more than 6 months. Unfortunately, Crystal would not qualify as she has had acro too long for their trials, but I doubt I would have gone that route as the logistics of travelling with her back and forth to the UK would just be a non starter. She was finally dx with acro in November last year but she was showing signs practically as soon as her diabetes was diagnosed in March, but at the time I just didn't know what it was, and nor did my vet, so precious time was lost.

Interesting comment about some acro cats going into remission, I never thought that was a possibility without surgery so it gives me hope that she will eventually come down to a much more manageable level. One thing I've noticed recently is that she isn't quite so hungry all the time and seems to be drinking less so that's an improvement as it was always so difficult to keep her head out of the civvie's food bowls. Currently I'm feeding her a home made raw chicken diet with added powdered supplements and she does well on it.

Must dash as we having friends arriving soon - will post tomorrow with a proper update as I've been a bit remiss over the last few days. Thanks for the offer Lu of posting a PM if I need to catch your eye. Have a good weekend.
Suki & Crystal
 
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