IGF-1 TEST- waiting for results

Discussion in 'Lantus / Levemir / Biosimilars' started by Deena and Malby, Oct 17, 2017.

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  1. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Hi everyone,
    Malachai just got tested yesterday for Acromegaly. Hoping everyone here can send positive vibes and put him in your kitty-prayers. :)
    In the meantime, for those Acro moms and dads out there, does anyone know what it means if he tests positive JUST for IAA and not IGF-1?
    Guess I don't thoroughly understand the difference for each?
    Thanks in advance!

    Deena and Malachai
     
  2. Chris & China (GA)

    Chris & China (GA) Well-Known Member

    Joined:
    May 10, 2013
    There's some great information in this "Acromegaly and Other High dose conditions" thread that can help explain the differences.

    Basically, acromegaly is due to a tumor on the pituitary gland, where IAA is where the immune system of the cat views the insulin as a foreign body and destroys it (like it does viruses and bacteria)

    If there's "good news", it's that IF it's just IAA, it can be self-limiting....meaning that at some point, the resistance can just "break"

    The key is staying on top of it.....increasing as often as necessary (within the TR protocol) to keep any glucose toxicity from setting in.....and if/when the IAA "breaks", be prepared to come flying down the dose ladder!
     
  3. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Hi Chris,
    This makes a lot of sense, thank you! I was actually wondering if one condition was worse then the other so now I know to "hope for" IAA over IGF-1.
    On another note, is there any reason that Malachi was testing at lower numbers on fewer units? He seemed to be doing better around 5.5 /6 units than 8 although I still never got him below 250. He's never even come anywhere close to blue!
    Thanks again for the info!

    Deena
     
  4. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

    Joined:
    Nov 30, 2016
    As Tom Petty would sing "the waiting is the hardest part"... It can take awhile and seems none of us here got both results on the same day
     
  5. Chris & China (GA)

    Chris & China (GA) Well-Known Member

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    May 10, 2013
    because he's a cat???....LOL

    It's very important that you test every cycle before shooting (the AMPS and PMPS) and it's also really important to get tests on the PM cycle too....without those, you're missing half the picture of what's going on with him

    You don't have to stay up all night testing or anything, just always grab a test before you go to bed at night. (of course if he's diving, you may need to get more tests in later)
     
  6. Doodles & Karen

    Doodles & Karen Well-Known Member

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    Jun 2, 2015
    I'd encourage you to read the stickies on the two protocols used on the board. Start Low Go Slow and Tight Regulation (TR). There's also good information in the
    The Basics New To the Group Sticky .

    It's good that you're home testing but honestly it's not safe to give insulin without getting a preshot test every time. I'm not criticizing, but concerned. BTW, I didn't home test for the first 3 months.

    Lantus is based on how low they go, not how high which requires mid cycle testing at different times to determine onset, nadir (lowest point in the cycle which varies) and duration. Increases below 5u are done in .25u increments, over 5u typically done in .5u increases although sometimes less and whole unit increases are not done until over 10u with proper data. There's not enough testing to determine what Malachai has really been doing on insulin. Higher numbers can result from too much insulin. The only way to know is by testing.
     
  7. DebG

    DebG Well-Known Member

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    Mar 30, 2016
    [​IMG]for favorable results:bighug::bighug::bighug::bighug:
     
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  8. Gill & George

    Gill & George Well-Known Member

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    Oct 27, 2015
    Let us know the results.

    There are folk on the board that are very experienced with both of those conditions and can help guide you with a strategy that will get Malachai into better numbers quickly and safely.

    Just took a look at the SS not sure what the reasoning was behind going from 7 to 8u, though it's true with higher dose cats we take the dose up more quickly, usually, when they get to over 5u we go up in 0.5u steps and we move up to 1u steps once they are over 10u. Taking them up quicker than that can be risky, especially with the limited data.
    I would encourage you to make a special effort at getting some midcycle tests in every cycle in light of the above. I read your last thread, I know theres an issue with him waking the whole household, but any chance you could get a test done before you all go to bed, even that will help tremendously, hopefully that will avoid upsetting the rest of the household. I

    I'm just wondering if you are finding the test strips expensive?? and perhaps thats affecting your ability to test? Human strips are so much cheaper, and they will allow you to monitor Malachai just the same.

    Keeping all our paws crossed for Malachai.
    :bighug::bighug::bighug:

    Your last post on LL
    http://www.felinediabetes.com/FDMB/threads/lantus-pens-arrived-warm-help.183941/
     
  9. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Both IAA and acromegaly are causes of insulin resistance. The mechanisms are different for both. In some cases, like my Neko, cats have both conditions. With acromegaly, the benign pituitary tumour can pulse, meaning grow or shrink. As it does that, the amount of injected insulin needed can very. It the situation you described, it's possible that at one time a smaller dose is all that is needed, then the tumour grew and more insulin was needed. Over the 5 years Neko was on insulin, her dose varied between 0.25 units and 8.75 units. The only way I could know that I wasn't under or overdosing her was to test at least 4 times a day, though in my case the minumum was more like 5 cause I like to gather data and test strategically. But I always did a before bed test. Most cats go lower at night.

    With IAA, the antibodies grab onto some of the injected insulin preventing it from being used by the rest of the cat's system. As the life span of the antibodies changes, they can release that injected insulin, at usually the most inconvenient time. A person with an IAA cat really has to keep on top of the numbers. From our experience, keeping an IAA kitty on a dose that generates some green nadirs usually helps keep on top of the antibodies. What is very typical for an IAA kitty is to initially see some good numbers on a dose, then the dose stops being good. I called it "the dose going stale". On Neko's way up the dosing scale, she first saw green at a little over 3 units, but didn't earn her first reduction until 8.75 units. In the mean time, she kept teasing me by showing some green on the doses in between.

    The other thing that can happen with cats is glucose toxicity, which is also a type of insulin resistance. A cat's body gets used to higher numbers, and you have to go even higher to break through that resistance.

    Best of luck with the test results.
     
  10. Sienne and Gabby (GA)

    Sienne and Gabby (GA) Senior Member Moderator

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    Dec 28, 2009
    @Sandy and Black Kitty was the first person here who had an IAA kitty only. She can tell you all about treating insulin resistance.

    Basically, you have to be aggressive with dosing in order to "get ahead" of the antibodies. Ultimately, IAA is a self-limiting condition but the amount of insulin to beat back the antibodies is unpredictable and the course can be uneven.

    Wendy just posted and I stopped writing since she knows about this first hand.

     
  11. Beenie (GA)

    Beenie (GA) Well-Known Member

    Joined:
    May 3, 2017
    Paws crossed for good results..in this case negativeo_O
    Beenie has both IAA and Acro. Any questions you have fire away. I'll answer whatever I can. There are folks with much more experience but we are in the thick of it and as Wendy said its important to test more frequently because of the ever changing insulin needs.
    :bighug:
     
  12. Tricia Cinco(GA) & Harvey

    Tricia Cinco(GA) & Harvey Well-Known Member

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    Jul 18, 2011
    Sending vines and prayers your way. At least you'll know what you're dealing with, which really helps!
     
  13. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    @Gill & George @Chris & China @Wendy&Neko @Beenie
    @Tricia Cinco(GA) & Harvey
    Hello guys,
    Well we received bad news today. Malachai tested positive for acromegaly, negative for IAA.
    The vet is calling me back tomorrow with some radiation options, I don't think there is anyone on the West Coast that currently performs the surgery according to the vet.
    I most likely will not be able to afford the radiation. Any suggestions on how to move forward would be appreciated.
    I vet suggested I increase his dose from 8 to 9 tonight. I know someone above suggested I go up in half units but I have never seen his Nadir below 259 and lately it's hard to get him in the yellow. I'm kinda agreeing with the vet on this one.
    I'm very upset right now- I literally got the news 15 minutes ago.
    What was most of everyone's plan of action after diagnosis? All he does all day is lay there… Is he in pain? Has anyone added pain medication or any additional supplements or medications that will help with numbers?
    Thank you!

    Deena and Malachai
     
  14. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    Sorry for the diagnosis, but at least you know what you're dealing with and the reason for the high insulin dose. Some here have had success with the trial drug Cabergoline. CBD oil is a natural remedy that I am trying for the joint pain from the acro bony growth along with fish oil & turmeric "golden paste". Some prescription options are Gaba or Bupe. You are not alone, many of us here have acro kitties.
     
  15. Chris & China (GA)

    Chris & China (GA) Well-Known Member

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    May 10, 2013
    Sorry about the diagnosis, but at least you know what you're dealing with now and that's something!!

    I think you could go to 9U.....remember, when we first start, we start at 1U and go up in .25 increments.....that's a 25% increase at that level.....once you get to 5U, a .25 unit increase is only a 5% increase in dose

    BUT...I wouldn't increase by a whole unit without getting some PM cycle tests in!! You really are missing half the picture of what's going on if you don't get at least a "before bed" test in

    It's all relative!

    Lots of good information in the Acromegaly Forum too
     
    Last edited: Oct 29, 2017
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  16. Chubba (GA)

    Chubba (GA) Well-Known Member

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    Apr 30, 2017
    So sorry about the diagnosis. By the time Gizmo was diagnosed I was pretty much convinced he had acro anyways. We had already decided that we wanted to try the cabergoline. Radiation wasn't really an option for us. We are just over a month into the meds and starting to see some results (I hope)! He is getting better numbers and I am hopeful that the cabergoline has started to work its magic.
     
  17. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    When I got the diagnosis - first thing I has was a pity party. :bighug: Then I read everything I could get my hands on, and asked a ton of questions. At the time, there was only one other person with an acro kitty. You are fortunate to have many others of us here now to lean on. I chose SRT (stereotactic radiation therapy) - it was also cheaper then.

    As for lying there, lethardy is a symptom of acromegaly. Part of it is high numbers, part of it could be acro pain. It could be growing pains, human acros report headaches, or arthritis from body/soft tissue growth. Many acros have arthritis - Neko had quite a bit of it. I started with fish oil and a Cosequin equivalent, then graduated to Cartrophen (Adequan in the US), Duralactin (anti inflammatory) and acupunture with daily acupressure at home. Neko was also on daily buprenorphine for several years. It was a game changer in terms of quality of life for her. Pain can also inflate the BG numbers.

    Washington State University in Spokane Washington does the surgery. There used to be someone who did it in the West LA VCA Vet hospital. My info is over a year old - but at the time it cost more than radiation therapy.

    As for dose, I agree with the others. You should step up the testing. Absolutely get a preshot test - each and every time. Every once in a while Neko would surprise me with a number below 50 at shot time. That would not have been safe to shoot. And also get those night time tests. Many cats go lower at night. For long stretches, Neko would go low (and earn reductions) at night, then bounce during the day. Without night time data, we can't say if Malachai is on too much insulin and going low at night, or on too little insulin and needing an increase. We will keep on about the testing - sorry. The number one cause of death of acros is a hypo. Their insulin needs can change on a dime as the tumour pulses up and down.

    At some point, you may want to consider a switch to Levemir instead of Lantus. It seems to have better duration in some kitties. Also, the acid base of Lantus can sting at higher doses. Not for all kitties, but some seem to feel better on Levemir vs. Lantus.
     
  18. Beenie (GA)

    Beenie (GA) Well-Known Member

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    May 3, 2017
    :bighug::bighug:Sorry about the Dx. We went the Cabergoline route and so far we're seeing results.
    You can also simply treat with the required insulin needs. For us the trial drug has been successful and the cost was worth the try. Whatever treatment option you choose you're in the right place for help, guidance, and support.
     
  19. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    The vet called today (I missed his call), but his message didn't sound very promising. He spoke of three different types of radiation however he did not bring up the Cabergoline which I will ask about.
    I've also read about a drug called Pasereotide. Is there a benefit to using Caborgoline and/or is there any reason that most people here seem to use that?
    The vet also said Malachai's Life expectancy IF I did radiation was 12 to 24 months. It was very upsetting to hear that. Has anybody here used cabergoline for any length of time? I'm just wondering if I can get his numbers down with that drug, what the life expectancy might be?
    I'm just not sure which route to take!
     
  20. Chris & China (GA)

    Chris & China (GA) Well-Known Member

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    May 10, 2013
    The problem with Pasereotide is the cost....it can be more expensive than the SRT treatment. Here's an article on Pasireotide for the Medical Management of Feline Hypersomatotropism

    He may not have ever heard of it. I think the only place that's using it as a treatment is the Royal Veterinary College in the UK (and their Diabetes Remission Clinic) but several people here have contacted them to learn more about it and then had their vets help them try it here
     
  21. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Pasireotide (Signifor) is a drug that has been shown to have good effects on acromegaly. The catch is the cost. When I investigated it a couple of years ago, the cost was around $2000 a month, slightly cheaper in Canada. The benefit to cabergoline is the cost. It is much more within most people's budget. People have just started using cabergoline this year on FDMB and the research on it is very recent. There have been some acrocats go off insulin on it. And most have had their doses reduced. There are no longer term statistics on what happens with cabergoline. Nothing is known of long term side effects or life expectancy because it is so new. In addition to RVC, a similar study was done in South America on cabergoline. More details are in the post in the high dose forum.

    Neko lived for 5 years with acromegaly, over 4 years after her SRT (radiation therapy). It really is ECID for life expectancy. We've seen a cat go four years without any treatment at all, just giving the insulin that was needed. And most acros are older cats, which means they get some of the other conditions older cats get too. When I asked the folks at Colorado State University the question of life expectancy after SRT, they said 2 years, but they also hadn't been doing it long enough to gather good data yet. Several of the kitties that got SRT around Neko's time, passed from unrelated cancers.

    In some ways, it was easier for me. There weren't so many options when Neko was diagnosed with acromegaly. The good news is that now there are more options, but other than surgical removal of the pituitary, there is no gold standard treatment. And even the first cat that had the surgery at the Royal Veterinary College only lived a couple of years after it.
     
    Last edited: Oct 31, 2017
  22. Tricia Cinco(GA) & Harvey

    Tricia Cinco(GA) & Harvey Well-Known Member

    Joined:
    Jul 18, 2011
    {{{Deena}}}

    You've gotten input from our most knowledgeable people here, and I don't have much to add, but wanted to let you know I'm thinking of you and Malachai.

    One question: How many acro cats has your vet dealt with? What kind of treatment did they pursue? I'm wondering because his attitude seems so negative. It's certainly not a happy diagnosis, but it's not exactly a death sentence - as Wendy said, cats can live for several years with it, like Neko did. The key is taking the necessary steps to alleviate the discomfort from the symptoms.

    Once you've gotten over the initial gut punch, start reading all the information that has been linked above, then ask lots of questions. There's an amazing amount of experience here, so take advantage of it. Whatever you decide to do, know you have a whole family here that's cheering you and Malachi on.
    :bighug::bighug::bighug:
     
  23. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    I actually received the message from my vet yesterday while traveling for work. I haven't even spoke with him yet. I don't think he has treated many Acro cats before. I guess they had a speciality vet in their office ehichbis where he gathered his information from and then relayed it to me. I think I would definitely like to try the Cabergoline if I can get my vet onboard.
    Would my first step be to contact RVC and then my doctor? Do they sell Cabergoline in the US or do people have it shipped? I believe I read somewhere that people were getting it in Arizona?
     
  24. Ella & Rusty & Stu(GA)

    Ella & Rusty & Stu(GA) Well-Known Member

    Joined:
    Jan 11, 2010
    (((Deena))),
    We are hoping that Malachai will do well with whatever treatment you and your vet decide upon. You certainly have so much knowledgeable help here on the board.
    We are thinking good thoughts as you and Malachai embark on this new path.

    :bighug::bighug::bighug:
     
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  25. saltycat

    saltycat Well-Known Member

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    Apr 18, 2016
    I think contacting Chris at the RVC would be a good step. I brought in his email to show it is an actual study being done and not just some random shot in the dark. Both the vets I have seen have had no experience with IAA or Acro. They had not even heard of the tests from MSU. Suffice to say, I've taught them a bit about the high dose conditions. Cabergoline is available in the US, it needs to be compounded due to the small doses. I was charged about $250 for a bottle while others have gotten it cheaper. Jack was diagnosed in apr of 2016 and has done good until very recently with a few health issues. Not sure if it is acro related or just him getting older.
     
  26. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Is a bottle considered a 30day supply? I've read some people paying $65-$95 but not sure if that was in the US.
     
  27. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Also, you said to contact Chris at RVC. Is his e-mail/contact info listed on their website? Or does anyone have that on hand here?
     
  28. saltycat

    saltycat Well-Known Member

    Joined:
    Apr 18, 2016
    fdrc@rvc.ac.uk is the email address I used to communicate with Chris.

    A bottle is a 30 day supply, they may be able to make a stronger concentrate that could last longer. I never got that far with it. I think my price was high because the vet ordered it when she was supposed to just give me a script. I'm guessing I paid a "vet tax" on them ordering it.

    @Beenie and @Bronx's dad are 2 I know that use/used it and could give you a better idea of cost.
     
  29. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    Yes, I tried it for a bit with Bronx and his numbers were getting better once I doubled the dose (which seems now is the starting dose for all kitties), but stopped once we decided on SRT. Cost was about $97 for 37 days, but the cost doubled once I increased the dose. Bronx was 17lbs at that time, so the cost will be less for you since Malachai is about 13lbs.
     
  30. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    Gizmo is 13-14lbs. The vet quoted me over $400 a month, but I am getting it at a pharmacy in NY for $90 (shipping included). I contacted Chris and then forwarded the email to my vet. He did some research and got back to me about the cost. I asked for the script to be sent to a different pharmacy and he was fine with that. A lot of people use diamondback, but they were actually more expensive for me. Just call around to some local pharmacies also. I had a local one quote me a little cheaper, but they weren't willing to make it sugar free, which of course was a deal breaker.
     
  31. Marvin's Mom - Nat

    Marvin's Mom - Nat Well-Known Member

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    Apr 10, 2017
    Marvin went the Cabergoline route and is OTJ at the moment. He is doing well and I don't regret it at all. His QoL is so much better. It was the option for me that fit my pocket book, the other options were not an option for me financially or available nearby. As others mentioned, some people simply treat with insulin at high doses. There are quite a few people with Acro here, so ask questions and breath. For me, I was somewhat relieved to find out about the Acro dx as it answered why insulin didn't seem to be working for him. My vet was open to trying the trial medication as we really had nothing to lose as his QoL was not good at that time. Now he is almost back to normal with the exception of his neuropathy which I am still seeing improvements, his QoL is good and his personality is back.
     
  32. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Hi there,
    What does Qol mean?
    My vet gave 3 radiation options:
    1)SRT- $14,000
    2)Standard radiation- $7,000
    3)PALLIATIVE radiation- $2,500
    And then $1500 for a CT scan.
    Has anyone here done the Palliative radiation and seen success? Or have you/anyone even heard about that type? I've only read about people doing SRT but I can't afford that or the standard radiation.
    I still need to do a lot of research of the pros and cons of each but I'm thinking Cabergoline still might be my best option with a limited budget. Hoping my vet will be onboard!
     
  33. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    QoL - quality of life.

    The quote for SRT seems high, as does that for a CT scan. Did he say what is involved in palliative radiation? That usually means not curative, so I can't see why you'd do it.
     
  34. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Hi Wendy,
    That's was the quote given to my doctor from another doctor at the Veterinary Cancer Group in Los Angeles, CA. I'm not sure if the quote is high just because we're in California and everything here is more expensive? I would love to go that route but I just can't afford that. I wonder if I should just call around other places and ask? Can I even do that?
     
  35. Marvin's Mom - Nat

    Marvin's Mom - Nat Well-Known Member

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    Apr 10, 2017
    I know that Wendy drove down to Colorado, for her kitty. There isn't a lot of places that offer the SRT options. @Wendy&Neko is the most knowledgeable with SRT.
     
  36. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    I drove to Colorado State University, because they had the most experience with treating acromegaly at the time, and were half the cost of a place that was closer. It was 3 days of driving, each way. I also flew there another time with Neko. Since then, the number of places offering SRT has increased a lot. Check out https://petcureoncology.com/locations/ who has a place in California.
     
  37. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Id like to get on this ASAP as Malachai has been a diabetic for one year now… So I'm assuming he's probably had acromegaly that long as well. Do you think it would be safe to immediately get him on Cabergoline to get his numbers down while trying to figure out other options? I would really love to get the SRT done if I can find an affordable place. thank you for the information above!
     
  38. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    There are possible side effects with Cabergoline, but I don't think any of the 6 or so cats on here have experienced any of them. Bronx was using Cabergoline until the SRT was done and his numbers were coming down towards the end after we doubled the dosage. No side effects except for a decreased appetite.
     
  39. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    It's an option, but we have no long term data on cats with cabergoline so can't say for sure. Nat started cabergoline about 4 months ago, and her cat has been on it the longest of any here. I know that doesn't help the decision, but it's not black and white. :bighug:
    Neko had acromegaly for at least 5 months before she was diagnosed with acromegaly. Later I found out the symptoms of acromegaly and back dated the first symptom (teary eyes due to soft tissue growth in the tear duct). And getting treatment sooner than later is always better. You want to limit the damage of the excess growth hormone.
     
  40. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    Yes, wish I also knew the signs early on. Bronx started walking with a strange gate from the damage about 8 months before he was diagnosed.
     
  41. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    How long was Bronx on Cabergoline before he did the SRT treatment?
     
  42. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    Started on 3/10, doubled the dose on 4/6 (which is now what most kitties start with) & then started weeing him off last week in April for SRT 1st week in May. Kitties should not go off Cabergoline abruptly according to Chris from RVC. His #s were getting better towards the end.
     
  43. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    Would love to see how Nats kitty is doing. Does anyone have her "handle" name so I can ask? Not sure if it is Nat & Zoe or Nat & Fluffy
     
  44. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Last edited: Nov 1, 2017
  45. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Other kitties here on Cabergoline are Gizmo (@Chubba ) , Tiffany (@Jadi & Tiffany ) and Beenie - I won't tag Michelle as Beenie has some other medical issues going on now. But you can look for her post.
     
  46. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    So amazing that Marvin got OTJ in only 5 short weeks! I long for the day I can see Malachai's personality back. I've been doing so much research in the past 48hrs! While I'd love to do SRT, and am not ruling it out, I'm not sure I can afford it. I'm going to reach out to Chris tomorrow with the provided e-mail and ask about a Cabergoline. Is there anything I should say to him or specifically ask for? I just want to make sure I have enough information to provide my vet so he is onboard with all of this!
    Thanks :)!
     
  47. Wendy&Neko

    Wendy&Neko Senior Member Moderator

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    Feb 28, 2012
    Some people did SRT on CareCredit, and paid it back over time.

    You might want to ask Chris if there is any published research material you can show your vet. Or maybe he can just summarize the results in an email you can show your vet.
     
  48. Mom2Maverick

    Mom2Maverick Member

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    Dec 15, 2016
    If you get any info from Chris, I'd love to see it. My vet emailed them weeks ago, but I haven't heard anything.
    I'm wanting to do the Cabergoline as well.
     
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  49. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    Tiffany is on Day 40 of Cabergoline and it has been a miracle drug for us. She has gone from 16u to 7u since starting and decreasing insulin every few days. Most importantly, she has her swag back. She is playful, runs through the house and behaves more like herself every day. She has been drinking less water, urinating less, her appetite is good and she is a very purry, happy girl. I have been communicating with Nat to check on Marvin's progress and he seems to be getting more and more of his old cat life back too. I know these kitties still have Acro, but I feel like it has bought us some quality time. My vet has been absolutely blown away with her progress. I am thankful to this board, Wendy and Paul, and Nat who trail blazed with the Cabergoline.
     
  50. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    I get Cabergoline from Diamond Back Drugs in Scottsdale, AZ http://www.diamondbackdrugs.com/. 60 day supply with shipping is $95. My vet has never had a cat with Acro and took us on because I could not go the expensive specialist route any longer. She was open to everything that I have learned on this board and has read everything from RVC on the Cabergoline trial. She now defers to my friends on the board when we are unsure of dosing.
     
  51. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    I'm also waiting to hear the results of the trial. So if you hear something, please let us know.
     
  52. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    @Jadi & Tiffany Have you noticed any decrease in appetite with the Carbegoline?
    Maverick is asking for food every
    3 hours. It would be nice for that to decrease a bit.
     
  53. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

    Joined:
    Nov 30, 2016
    Bronx's appetite did decrease with the Cabergoline
     
  54. Deena and Malby

    Deena and Malby Member

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    Dec 6, 2016
    I'm only hearing postive news about Cabergoline thus far! I'm going to e-mail Chris today to get some information to provide my vet.
    Also, does anyone here know how often I should feed Malachai? My vet prefers I only feed him 12 hours apart since he isn't regulated andI'm trying to keep his numbers down throughout the day. Since everyone's numbers seem to be coming down with the use of Cabergoline, are you feeding smaller meals throughout the day?
     
  55. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

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    Nov 30, 2016
    Smaller meals throughout the day are better, many of us use a timed pet feeder than can store 5 meals. To get an accurate BG#, he should not eat 2hrs before testing. Don't starve your kitty, he will eat less once he becomes regulated. Acro kitties want to eat a lot, a good analogy that Wendy said, they think they are growing teenagers.
     
  56. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    That's the thinking with some of the older in and out insulins like Vetsulin. With Lantus or Levemir it's fine to eat several small meals a day. Some people here have grazers and that's OK too. However, it is best to feed most of the carbs in the first part of the cycle, before nadir, when the insulin is stronger. Feeding later can shorter the insulin duration and give you higher preshots. If you must feed after nadir (or they'll chew your leg off :p) try zero carb snacks like baked/boiled chicken breast.
     
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  57. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    Maybe a little. She will not always eat her whole portion like she used to and I do try to give smaller snacks throughout the day. (i.e. tiki cat mousse, roast beef and chicken) Acro cats love their food and she does wake up ravenous. This time change is going to be a real bummer for me.:blackeye:
     
  58. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Also,
    Does anyone here have Chris's email? I was given it the other day but can't seem to find it.
    Thank you!
    So if his Nadir is usually 12:30-1:30pm,
    And I usually shoot at 7am &7pm, are you saying I could feed 1can at 7am, maybe 1 can at 10am and then one at 7pm and one at 10pm before bed??? Would this be ideal?
     
  59. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    I received this from RVC (it wasn't Chris who replied though.)
    I'm a little confused as to what she meant below,
    "We have been using veterinary formulated cabergoline, either Kelactin or Galastop."
    So am I not actually giving them Cabergoline? Do I need to prescribe one of the above? I'm so confused!
     
  60. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

    Joined:
    Nov 30, 2016
    You want Cabergoline in liquid form. A compounding pharmacy has to do it & they can flavor it with chicken, fish or other flavors, just make sure they confirm there is no added sugar in the flavoring.
     
  61. Camille and Cyclone

    Camille and Cyclone Well-Known Member

    Joined:
    Dec 29, 2009
    Cabergoline is the generic drug, Kelactin and Galastop are brand names for it.
     
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  62. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Are most people putting flavor into the meds? Or is it just to be safe that they will eat it? Malachai will usually eat anything...even with meds in it
     
  63. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Feeding at preshot at at +3 would work. Just take the current amount you are feeding, and split it between the multiple meals. Without more early cycle data - it's hard to say if it's ideal. Some people will feed a meal just before onset, to cushion the drop, if there cat is one of those that likes to drop hard and fast.
     
  64. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Hi wendy,
    Yes, I don't have much for early cycle data but if you look at what I've compiled over the last year of testing, Malachai is extremely predictable. He is high in the AM, slowly drops and hits his Nadir at +5 to +7 and then slowly starts going back up.
    I've never had a BG test number surprise me. With that said, do you think those feeding times are a good plan? He's always so hungry 2hrs before feeding/shot time but I usually try to just give him a freeze dried treat or piece of chicken breast tomhold him over.
    I'll do whatever you guys think is best, that's why I'm asking. Thanks :)
     
  65. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    I'm going to speak with my vet today/tmrw now that I have the information from RVC. I'm very anxious to get him on it!
     
  66. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

    Joined:
    Nov 30, 2016
    It's just so kitties will eat it. Bronx liked the fish flavor.
     
  67. Bobbie And Bubba

    Bobbie And Bubba Well-Known Member

    Joined:
    Jun 15, 2015
    Deena, so sorry that you and Malachai got the DX of acro. There is such a great support system her with acro kitties and parents and I think of Marvin who went OTJ Cabergoline. Wishing the best for you both. :bighug::bighug::bighug:
     
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  68. Marvin's Mom - Nat

    Marvin's Mom - Nat Well-Known Member

    Joined:
    Apr 10, 2017
    I get chickhen flavor for Marvin. I squirt it in his mouth directly, that way I know if got the full dose. He is good with that, haven't had much issues, took a little bit to get him used to it. He knows he gets feed right after so he puts up with it. His appetite may have gone down at first, but it's back. I think his lack of appetite was more related to the diabetes being unregulated than the meds in his case. He was really doing badly, now it's amazing. His coat is back to normal and shining, his bad attitude is back....lol.... he isn't lying on his side all the time including when he ate, he sits now while eating. Like Jadi said it's made a huge difference for him and for me too.
     
  69. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Hi,
    I just called Diamondbavk and hey quoted me $150 for a 30 day supply I'm wondering how much Cabergoline you give Tiffany and it's strength. I didn't see her weight (Malachai weighs 13.5lbs) but I'm trying to figure out why theynquoyed me so much more?
     
  70. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    That is weird. My vet is the one who called it in...do they have different pricing for vet offices? I give Tiff 0.25 MG/ML of a compounded Cabergoline with chicken flavor. (Tiff's weight is about the same.)
     
  71. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    This is my quote.
    He would get 0.8mg per day.

    I can't believe I did this but I miscalculated his dose. So I'm hoping it will be significantly less expensive.
    At 10mcg/kg he would get 0.084 mg daily or 84.5 mcg daily.
    A misplaced decimal point is a large error and I'm a nurse!
    The vet is supposed to arrange the prescription tomorrow.
     

    Attached Files:

    Last edited: Nov 7, 2017
    Reason for edit: miscalculated dose
  72. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Hi,
    How much does Maverick weigh? Thanks!
     
  73. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
  74. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Also, is Cabergoline given daily? I feel lien I read that some were giving it every other dayCan I give it with his food in the AM?
    i
    So they want Malachai on .6 per day which is a lot more than your .25 a day. I wonder if my vet calculated it right since you said Tiffany is about the same weight as Malachai??
    I did want to clarify though, are you getting a 60 day supply for $95 or a 30 day supply? I'm not finding it anywhere cheaper than $150 for 30days so if you're spending $95 for a 60days that's fantastic!!!!
     
  75. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    Yes $95 for 60 days, (15 ml) but I am using less. It is working at .25 and Tiff is 13.5 pounds.
     
  76. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    I wonder why such a difference. Gizmo is also around 13.5 lbs and is getting 0.6ml. His bottle is 20ml for $90. So I guess the price range is pretty close, but the dose is drastically different. Maybe the strength of how it is compounded is different? Makes me wonder if I have him on to much. I know the South American study was only dosed every other day.
     
  77. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Yeah I'm totally confused now....
    I think they were going to give me a 30ML bottle and I was supposed to dose .6
    How long does the medication last? I heard it was only good for 36 days. Is that right?
    I'm wondering if I could start giving him less and if he needs more just, just raise the dose?
     
  78. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    I've also heard that it lasts only about a month, but the pharmacy we get ours from told my husband they could make more than 1 month at a time. So I'm not sure. We didn't check into it because we wanted to see if it would work for Gizmo first. My vet actually prescribed a range for the dose (0.3ml to 0.7ml). We did the calculations based on his weight and came up with 0.6ml. I'm just looking at Gizmo's prescription, it says it it good for 1 year.

    @Marvin's Mom - Nat
    Just curious .... how much does Marvin weigh and what is his dose?
     
  79. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Yeah I hoenstly just don't understand what the difference between 15 ML 20 ML and 30ML is?
    Shouldn't we all be he getting the same ML size bottle and just be giving different doses?
    My vet has never prescribed this so I'm not even sure what what I should be asking for?
     
  80. Chris & China (GA)

    Chris & China (GA) Well-Known Member

    Joined:
    May 10, 2013
    The only difference between 15ml, 20ml and 30ml is the total amount the bottle holds
     
  81. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    I'm guessing (really just a complete guess) that the difference is because it it based on weight and each of us would need a different amount for a month supply based on the cat's weight. But what doesn't make sense is all 3 cats weight pretty close to the same, but are all different amounts. :confused:

    I was pretty much on my own with my vet as well. I just sent the email from RVC to my vet and he prescribed the cabergoline based on the info in the email. That is why I am still a bit confused/worried about the dose. Just want to make sure it is correct.
     
  82. Chris & China (GA)

    Chris & China (GA) Well-Known Member

    Joined:
    May 10, 2013
    Is the concentration the same?.....I don't know anything about that particular drug, but like with some drugs, you could get 250mgs per ml or 500mgs per ml
     
  83. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    That's the only explanation that I can come up with. Gizmo's is 100 micrograms per milliliter (I believe, I don't have the bottle beside me anymore, but I'm pretty sure). Based on his weight (6 kilograms) and the dose of 10 micrograms per kilogram, he would get 60 micrograms. So 0.6ml based on how his cabergoline is compounded.
     
  84. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    We have no way of measuring if he "needs more". I would stick with the standard recommendation of 10 micrograms per kilogram of cat. If you have a 6 kg cat like Gizmo is, that 30 ML bottle will last you for 50 days (50 x 0.6ml = 30ml). How much does Malachai weigh?
     
  85. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Wendy,
    Malachai also weighs 13.5lbs like Gizmo. But I wouldn't want a 30ML bottle then if it only last 30 days, right?
     
  86. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Depends on the concentration of cabergoline. If it's 100 micrograms per millileter, then a 20 ML would be better - leaving a bit of room for spills.
     
  87. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
    @Wendy&Neko
    I did not question our dose until now... my vet is the one who called the pharmacy and prescribed the .25 ML dose. It has been working and we have been ecstatic. However, her BG's have spiked up this morning into the 300's and I am freaking out. I did just start a new bottle 2 days ago and worried that they could have compounded it differently. (or possibly something else is going on with Tiff. She does not seem to be in pain.) I have had company this week, but I plan to give my vet a call tomorrow about the dosing. Hoping Tiff's BG's will go back down today!!!! UGH.

    Tiff is 13.5 pounds, so what would be the dose? .6 ML?
     
  88. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    @Jadi & Tiffany - Please start your own post on this question. We don't want to hijack this one, and this thread is already too long. One observation though, you haven't tested the last two nights, I can only guess what happened then.
     
  89. Chubba (GA)

    Chubba (GA) Well-Known Member

    Joined:
    Apr 30, 2017
    Hopefully it is just stress from your company. Is it possible that she got into some contraband food? Hope she comes back down for you! :bighug:
     
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  90. Jadi & Tiffany

    Jadi & Tiffany Member

    Joined:
    Mar 5, 2017
     
  91. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    For what it's worth, I don't think it's a cabergoline dosing question. I think you missed a low last night and she's bouncing.
     
  92. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    I sent an e-mail to the e-mail provided above and received an e-mail right away but it wasn't from chris. If you would like, I can send it to you directly? That e-mail was enough for my vet to give it a try....
     
  93. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Hi everyone,
    @Wendy&Neko I found a pharmacy in CA that can make Cabergoline but wants to make it oil based so they can add the flavoring and it's also supposed to extend the shelf life. Is that OKAY?
    Is anyone else here using oil based?
     
  94. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    I never used cabergoline - too late for Neko. But I have her lots of other compounded products that were oil based. Should be fine.
     
  95. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Is your Cabergoline Oil based? I found a place that said they could do it that way as it would extend the shelf life and they could also add flavoring that way. I just want to make sure that's safe. Thanks!
     
  96. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    I just received this from the RVC below. I just want to confirm that everyone here is in fact compounding the Cabergoline (and not kelactin /gelastop) and that they are seeing results…

    " I am afraid we don’t have any experience with compounding cabergoline…Do you have access to the original veterinary formulation – Kelactin or Galastop? There might be a human drug otherwise. In general – for any kind of medication – compounded drugs are not 100% reliable and that’s why we do not recommend those. But obviously – if there is no other choice – you could try that."
     
  97. Marvin's Mom - Nat

    Marvin's Mom - Nat Well-Known Member

    Joined:
    Apr 10, 2017
    Chris had mentioned those to me, they are the manufacturers, and here in Canada we don't have them, the are European companies I think. You may have them in the states but I doubt it. Your pharmacist may know.
     
  98. Deena and Malby

    Deena and Malby Member

    Joined:
    Dec 6, 2016
    Can I ask what Bronx's weight was when he started the Cabergoline? I saw that you were on .4 and then went to .8 in roughly 3 weeks.
    Did you see much improvement with his numbers I n the short time he was on it? It didn't look like his numbers dropped much.
    I haven't been able to test Malachai mid day much (I will next week), but he seemed to have a good reaction to the Medication the first few days and then I've had some higher mid-day tests than I'd like recently. I'm gonna gather about another weeks worth of data but I may increase.
    Either or, just curious what his weight was and if you felt the Cabergoline was working?
     
  99. Bronx's dad (GA)

    Bronx's dad (GA) Well-Known Member

    Joined:
    Nov 30, 2016
    He was about 17-18lbs at that time. It did seem to start working towards the end but he was going in for SRT so I took him off. The small study in S. America showed it can take a few months to see benefits.
     
  100. Mom2Maverick

    Mom2Maverick Member

    Joined:
    Dec 15, 2016
    I'm finally having cabergoline compounded for Maverick and it too is oil based. At this point, it is all experimental.
     
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