Cricket's cabergoline thread

Discussion in 'Acromegaly / IAA / Cushings Cats' started by Teresa & Cricket, Mar 27, 2019.

  1. Teresa & Cricket

    Teresa & Cricket Member

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    Nov 5, 2018
    I'm starting this thread to document Cricket taking Cabergoline.
    The vet Rx is .5ml once pd

    Today (3/27/19) I'm starting her on .1ml just to see if she has a reaction and will increase each day.
    No one told me to do this but with her fragile state, I feel it is best to introduce new meds slowly.

    How she is right now:
    You can see previous thread, but basics are that her tumor is likely very large and is affecting parts of her brain. Her muscle control is especially problematic, where her right side has been "weak" for a few months. A few days ago something shifted and it got worse. She is ataxic/wobbly and stares off into the ceiling a lot. But she's still here, walks around and has an appetite (altho I have to bring her food and hold it in front of her), she still grooms her face and follows me around.

    Concurrently, she has HCM and is just over a year past CHF.
    Takes furosemide, clopidegrel and insulin.
    Current insulin is 5.5U, but her BSL has been elevated since this event and I am considering upping it if it doesn't come down on its own.

    So this is day one, I'll add more in a couple days or if I notice any changes.
     
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  2. Squeaky and KT (GA)

    Squeaky and KT (GA) Well-Known Member

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    HUGS and hugs and hope and hugs...
     
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  3. JeffJ

    JeffJ Well-Known Member

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    I hope Cricket responds quickly to the cabergoline.
    Hugs and best wishes to you and Cricket from Leo and Little Dude.

    Leo and LD - hugs for Cricket - March 2019.JPG
     
  4. Teresa & Cricket

    Teresa & Cricket Member

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    Thank you so much <3 :bighug:
     
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  5. Squeaky and KT (GA)

    Squeaky and KT (GA) Well-Known Member

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    <3 <--I grin...I can tell you're a facebook user... :) I do that all the time and it never turns to a heart.

    More hugs
     
  6. Teresa & Cricket

    Teresa & Cricket Member

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    Nov 5, 2018
    Today I gave Cricket .2ml cabergoline- no digestive side effects as yet.

    Her Sx are worsening, she keeps slipping while walking and also peeing in random spots.
    Eating, but reluctantly and in smaller amounts.

    Just now, I noticed her lymph nodes are swollen:( I also noticed her ears aren't healing as fast from blood pokes as normal. So either there is an immune disease or she has an infection.....so I will be making an appointment at the vet first thing tomorrow.
     
  7. JeffJ

    JeffJ Well-Known Member

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    I hope the cabergoline starts working its magic quickly. Hugs to you and poor Cricket.
     
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  8. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Tagging @Olive & Paula who might be able to comment on cabergoline dose or symptoms.
     
  9. Olive & Paula

    Olive & Paula Well-Known Member

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    @Teresa & Cricket

    Olive started cabergoline at .5 ml based on the studies recommendation for weight. However, Dr had old weight so dose was a bit low. So adjusted dose to .6 ml for her current weight. In all the studies cabergoline started to work at week 3 or longer. I noticed week 3 for Olive. Olive never had GI upset which supposedly limited to 3 days according to the studies, but again we didn't have that issue.

    Cricket has some symptoms I haven't heard before as being part of acro so I can't comment on those.

    Olive use to have very noisey, grunting, gurgle sounding, raspy breathing with an expiration wheeze. It was all the time non stop and so loud you could hear it over the TV and 2 rooms away. Mostly stopped now, but an occasional wheeze still on expiration.

    Her walk was extremely cautious like she was testing each step to make sure the floor wasn't going to cave in. Occasionally she would stumble or start to lose balance. when She sits up her legs were shakey, wobbly. She is now confidently walking, trotting, jumping up on furniture. Legs don't shake when sitting.

    She had no stamina, just laid around like a big blob. Now she plays a tiny bit, sprint down the hall.

    She has never allowed touching below her shoulders, she seems to have nerve pain down her back. Still has this but is allowing minimal brushing/combing. Dr thinks it's more of a spinal issue/injury though.

    Olive use to sit sometimes with her head pressed into the back of couch or armchair. She use to cover her eyes at times I think to block out light. I think this was headaches. This has stopped and she now loves to sleep in the sun.

    Olive's glucoses started dropping I think day 10. For awhile it was fast. Reductions where close, sometimes large reductions. There was no knowing, monitoring is crucial to stay on top of it.

    About 2 months in I would have to look up dates, glucoses started rising, symptoms started returning. Thought caber was different as the suspension was different from the 1st bottle. It was sent back to be analyzed. Pharmacist called back and said It was fine had all the ingredients in proper amounts. Maybe dose needed to be adjusted. So with vets approval started increasing dose as long as I did not exceed double of original of 0.6 ml. there are no studies that did dose increases. We got up to 0.8 symptoms went away, pancreatitis hit, resolved, left dose alone.. Lately I'm hearing the grunting at times so I'm thinking an increase is needed but waiting for new bottle to arrive.

    Since it takes time for caber to start working I don't think I would take to long to get right dose in.

    Cabergoline for me and our vet is uncharted territory. Every cat will respond differently to it. I wanted to at the least make Olive more comfortable and will give the caber 1 yr trial. It has done that. I think some people who stopped using it, didn't give it long enough and or expecting remisson. I don't think Olive will ever achieve remission, but symptoms have abated and that to me is more important.
     
  10. Teresa & Cricket

    Teresa & Cricket Member

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  11. Olive & Paula

    Olive & Paula Well-Known Member

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    I think Olive's weight (which was old weight) when 1st ordered was 11 or 12 lbs so Dr ordered .5 ml. The concentration is 100 mcg/ml.

    When the med arrived I double checked the dose and Olive was at 13 lbs so dose should have been 0.59 ml. So I started at 0.6 ml.

    Then over time I did 0.7 and moved up to 0.8 ml and thats where the symptoms started to abate. Has been at that for quite some time now. But I'm starting to hear the expiry wheeze again so I might up it to 0.9 soon.

    It does sound as if cricket is having some type of seizure though. If the tumor is large enough and causing pressure, it could be possible. But by don't know for sure.
     
  12. Teresa & Cricket

    Teresa & Cricket Member

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    Oh, so was your compounded formula 1ml to 100mcg?
    Mine is 1ml to 125 mcg, so the math isn't as easy. But it looks like .5 is still right for Cricket, or just a tick under .5

    As for seizures, the ER vets didn't see evidence of a seizure. But if she is seizing, it is not grand mal.
     
  13. Olive & Paula

    Olive & Paula Well-Known Member

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    Yes that's the math for our caber.I

    They could be focal seizures. it's limited to a certain area of the body. They might not lose consciousness but can seem disoriented. There are different kinds.
     
  14. Teresa & Cricket

    Teresa & Cricket Member

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    Today we started the full 0.5 dose and go lab results back.
    Hooray! No kidney or UTI or any infection.
    Potassium was "on the lowest side of normal" so I will be supplementing 1/2 doses of K for her now.
    I'm also starting the B12 methyl, after reading up in here.

    Vet feels the urination/thirst is more related to her BSL popping up higher and I'll be increasing the dose.

    I thought maybe she was higher because of an infection, but it looks like the pituitary gland is just kicking up and pushing her BSL higher, making her feel very bad.

    This also proves that the IM I was seeing (as mentioned in a separate thread) was very wrong in his dosing suggestions--as I figured.
    I will not be going back to him.
    @Wendy&Neko , you might remember that he told me she was blind in one eye? The ER and other vets feel she is seeing fine-- as do I.


    She's also seeming better little by little. She's walking a bit better, wanting up on the couch w/me and at least trying to pee in the litter box now (on puppy pads, but hey!). I need to trouble shoot this cause the new low box I got is very slippery for her to walk in, and that's why she keeps going over the side, or just literally laying down in it:(

    I'm feeling hopeful for the cabergoline.
     
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  15. JeffJ

    JeffJ Well-Known Member

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    Great status update. I am also very hopeful the cabergoline will reduce the Acro symptoms for poor Cricket.:bighug:
     
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  16. Olive & Paula

    Olive & Paula Well-Known Member

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    As far as the box goes, it could be legs are to weak yet. How about putting puppy pad in box with no litter yet. It won't be slippery the eventually when she starts improving, slowly add litter to it.
     
  17. Teresa & Cricket

    Teresa & Cricket Member

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    Thats a great idea, Paula thanks!
    I'm also considering scruffing up the surface with sand paper...
     
  18. Olive & Paula

    Olive & Paula Well-Known Member

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    I wouldn't scruff it. The urine odor will in grain in it and that could cause aversion.
     
  19. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Sounds like kitten steps of improvement. :) The low potassium could definitely contribute to her being wobbly.

    As for her insulin dose, I am glad you are increasing. The tumour can definitely ramp up quickly. You might think about a 1/2 unit increase. Plus it leaves you on the line.
     
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  20. Teresa & Cricket

    Teresa & Cricket Member

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    I'm figuring I'll go up to 6, but I'm going to give her a day at 5.75, just because she's sensitive.
    This disease is wild, I mean she was in such a nice place in the blues for a while there.

    Honestly, she's already starting to act a little more normal this evening after starting the K and B12. Still low energy, but more present and attentive.

    I need to find a better source of the B12 methyl though, the one I have has rice flour as a filler.

    I also think she had a string of bad headaches during all of this, which makes sense.
     
  21. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Is Cricket on anything for pain? It is thought acros can get headaches. Either buprenorphine or gabapentin seem to help.
     
  22. Teresa & Cricket

    Teresa & Cricket Member

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    Nov 5, 2018
    I have a Rx for gabapentin, which we use for vet visits.
    I tried giving her a half dose for potential pain a few weeks ago, but it made her too drowsy to handle with the neurological problem in her right front leg. She was falling while using the litter box.
    So I don't intend on using pain meds on her until I can get the weakness under control at least.

    But if she shows signs of headache again, I might try a small amount of it.
     
  23. Olive & Paula

    Olive & Paula Well-Known Member

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    What dose of gabapentin do you have! It can make them drowsy at first, but after a few days they adjust. It will also help with the discomfort of spurts of bone and soft tissue growth. I think Olive started with 50 mg twice a day before the cabergoline. I always try to reduce meds if I can so as the caber started helpingI, she went to 25 mg twice a day, then 12.5 mg twice a day and she stayed in that a long time. March 2 was her last day on it. She is on bupre though and always will be for the pancreatitis, it's a lower dose then originally started at.

    A few things to keep in mind and this is what I observed in Olive and Wendy always seemed to know whether it was the acro or not.

    I will try to make sense here. The way I think about her FD has shifted to more the Acro. Whether that happens naturally I don't know. Before the caber started I swear I could tell when the tumor was having an active spurt. If that's possible I don't know. Her original vet still thinks she is better because the glucoses are better. Although that is part of it, it's because the caber is helping the glucoses. But he was told by specialists caber doesn't work, so that's what he believes.

    There will be times glucose just jumps up for no apparent reason. Your mind runs the list: fur shot, bad tooth, UTI, constipation, contraband etc? When you know without a doubt none of that happened, you know it's a tumor spurt of activity. It happens a lot less now, but still happens.

    You want to keep in top of the constipation. I think that's our biggest issue now. Since Cricket has some back end issues, you want to be on top of it. Having pain managed could help. Olive is extremely sensitive in her hips and rear. I'm sure it hurts her to go. I try to not let her jump, just my thought that it must hurt when she lands especially on a hard floor. In carpeted rooms she does okay.

    I don't necessarily obsess about high glucoses anymore. Of course I want them lower and they are, but it's Olive's demeanor, behavior, comfort that matters. Olive now and Olive before caber is night and day.

    I will never understand the technical stuff of acro or caber and how they work. I just know Olive is benefiting from it.

    She is letting me know its time for her bupre. I created an addict.
     
  24. Olive & Paula

    Olive & Paula Well-Known Member

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    @Teresa & Cricket app

    I have to clarify the above post.

    Olive was on gabapentin long before we knew of the acro dx. When she first got here she was bloated and very uncomfortable. The vets thought it was because she was newly dx with FD and not yet treated long enough (only about 1 week in). Then we found out about her abdominal mass. The IM said to give the gab every 8 hrs because it was clear she needed pain relief. But we started to reduce the gab. It helped but she continued with the symptoms. It was about 6 months later we found out about the acro and went back to every 8 hrs. It took another 4 months part because I wasn't pushing my vet about it (and had a lot going on with my dad and husband medically) and while looking at other options. Then we started caber then p'titis hit that lasted a long time. When she started bupre, we tapered the gab down. That's when it became clear it was helping her acro more than the bupre. So back up in gab we went. She was on both for a long time. Every 6 hrs she got a dose of one. At this time off gab but if needed will start it right up again. I would like to switch her back to gab and off bupre but afraid it will backfire on us. Maybe when her p'titis level drops more I will give it a try.
     
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  25. Teresa & Cricket

    Teresa & Cricket Member

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    Nov 5, 2018
    Cricket update:
    Cricket has had at least 2 more "episodes" of freezing up. Could be muscle spasms, could be vaso-vagal events, could be petit mals... not clear and I have to put off seeing my new IM because the money I was saving for that visit went to the ER and blood test.
    A few nights ago, I came home and she had accidentally shut herself in the bathroom, was crouched behind the toilet, had pooped and peed on the floor, knocked over a water bowl, and never touched her food.
    It was scary, but didn't look like she was in there long. She let me clean her, then slept the whole night by my bed (not even peeing) and ate a pouch of Tiki mousse.
    But come morning, she was fine again!

    However, the last one was much more mild and she popped back out faster.
    She's been walking more and purring

    Most importantly, this morning her AMPS was 185! :cat:

    So I didn't shoot.
    Then this eve she was at 285.
    I want to be cautious (and sleep) so I gave her just 1U lantus
    I'll adjust in morning if needed.

    I am assuming this means the cabergoline is starting to work!!!

    She's been more attentive, purring and following me around, (her norm)

    She's also peeing in the right place again!

    No more constipation.

    She's still got weak legs, but she can stand and walk and eat much better already.

    Oh, and her thirst and urination has calmed down considerably. Her appetite is more normal.



    Thinking about supplementing fish oil, anybody do that and what's your dose?

    Also, anyone using CBD oil for acros?

    I'm considering building or looking for a ramp so she can get up and down from the bed, I am really missing sleeping with her but I'm afraid she'll try to get down on her own while I'm asleep and fall :nailbiting:
     
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  26. Teresa & Cricket

    Teresa & Cricket Member

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    @Olive & Paula , I am interested in working on pain management for her, looking into CBD oil.

    The Rx for gaba is 100mg. It is the amount prescribed for calming a cat for vet visits.
    I've given her the full amount for one vet visit and once at home.

    Another time, I gave her half(50mg) and it made her spacey.

    I have also heard (from the pharmacist) that it is hard on the liver and kidneys.

    I'm willing to try a smaller dose, but want to talk to a vet first.
    The last IM (the bad one) didn't feel she was in pain, just because she wasn't holding an aggressive pain stance. I think he's full of crap.

    I would likely need to compound it tho, because I have it in gel-cap and can't easily 1/2 or 1/4 it.
     
  27. Olive & Paula

    Olive & Paula Well-Known Member

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    I have no experience with CBD.

    I don't know if the 100 mg is for calming. I tend to think so as a lot give it for that reason. Olive was never on that much nor for that reason.

    50 mg helped her be more comfortable. Then down to 25 mg and was on that for months. Then 12.5 mg for months until she was off it.

    At first the 50 mg were triangle and hard to cut into quarters but that was what vet gave.

    Once It was determined she would need it long term started looking into options. The ones I get now are chewable and she loves them. They are triangle pills so quartering would be hard. They crumble easy also so can mix in food. I get the 25 mg and half them. For now I'm using them on Tripper until her appt in a few weeks. If the doctor (different than Ollies) doesn't order her own script, I will keep using Ollie 's. She is all about keeping Ollie comfortable and has no issue with the bupre and gab being for life, She thinks it best.

    If you compound maybe getting 25 mg is good. You can give 2 if needed yet cut in half also And of course give the 25 mg. So you have 3 doses available. Trick is to get Dr to order the higher dose so you have enough. If he orders lower dose but you give the higher one you will run out and pharmacy might not be able to refill if it's to early.

    How is it going with cabergoline?
     
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  28. Olive & Paula

    Olive & Paula Well-Known Member

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    How about talking with @Wendy&Neko about the dosing of insulin. Skipping might not be best option yet. Right now with the inconsistent shots and I get why and understand your reason but the depot will be messed up and you won't be getting accurate readings.

    With cabergoline one does not necessarily go according to the rules. You do need consistent dosing still .You might also start thinking of a lower number to make it a no shot time.

    Teresa, do not go this alone. Caber can make it unpredictable. You will need to be diligent in testing until you know how it will work for Cricket.

    Marvin went off insulin in a matter of weeks, Olive probably won't but look back at her ss for Oct/Nov 2018. It was wild. Now she is taking her time.
     
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  29. Wendy&Neko

    Wendy&Neko Well-Known Member

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    Good to hear you are seeing some improvements in Cricket, though those episodes must have been scary!

    185 is a perfectly safe number to shoot. Especially if you can monitor. With Lantus, the lower you shoot, the flatter the cycle. We determine how to change doses based on how low the dose takes the cat. The cycle following the skip and low dose you gave, the depot helped keep her lower. Now the depot is emptying and will be going up.

    As Paula said, you do have to be cautious with cabergoline in the mix, and it’s been 10 days so it might be starting to work. However, overly cautious will keep her in high numbers. So you need to find a happy medium. Think in terms of reducing by a whole unit, until you get an idea of how she reacts to the reduction. It is better to go to a lower dose, and work your way back up in dose you need to. If she gives you a low number and you can not monitor, it’s OK to skip. And by low, I mean quite a bit lower than 185.
     
  30. Teresa & Cricket

    Teresa & Cricket Member

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    Hi Wendy and Paula, thanks for the responses.

    I actually don't feel comfortable shooting at 185, especially because I wasn't going to be home around her nadir to monitor.
    I would rather take the safest possible route. The only times I can get a mid-cycle read is on Sundays and Mondays (occasionally Sats)

    I totally get that you all are comfortable with dosing under 200, but I'm not... especially if I can't monitor.

    One time I did shoot when she was that low and it stressed me out, I was waking up every couple of hours to check her. The lowest she seemed to get was 111, but it was still nerve-racking.

    Seeing so many stories here about sudden hypos has me very cautious.
    We've had so much stress in the last 2 weeks, I can't have another thing to keep me worried. I need a full night sleep where I don't wake up paranoid that something happened to her.

    And yes Wendy, I did re-start her low.
    I did 1u the following eve, it didn't appear to affect her/BSL didn't seem to go down.
    This morning I bumped her to 2 and she appeared to stay under 300. (1.5 seemed futile)

    I'm keeping her at 2u tonight and will be able to monitor closer tomorrow and monday.

    If she climbs, I will bump it up.

    Her urination and thirst is normalizing and her energy is returning. She's also walking much better.

    Tomorrow I'll dive through and look at everyone's SSs who used/uses cabergoline.

    I do appreciate the advice and take in every bit of it, so THANK YOU:bighug::bighug:
     
  31. JeffJ

    JeffJ Well-Known Member

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    Jul 7, 2016
    Not everyone is comfortable dosing under 200. And some cats are bouncy.

    I probably would not dose Leo when he is under 200, because he is too variable. If you look at Leo's chart, it is a color smorgasbord, often from a string of consistent doses. Under these conditions, I have always followed the original suggestion from my vet.

    She said "Keep Leo safe". And I have tried. Ultimately you must keep Cricket safe too! I wish you continued progress with the cabergoline. :bighug:

    Lately, Leo has stabilized a bit, so he does get dosed under 200. But I'm here to watch him.
     
    Last edited: Apr 7, 2019
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  32. Olive & Paula

    Olive & Paula Well-Known Member

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    Keeping her safe is most important. I'm lucky enough I'm home or can be home except Fridays and every other Saturday. It's still worrisome at times.
     
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  33. Teresa & Cricket

    Teresa & Cricket Member

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    Hi all, its been a while since I've given an update, been very busy:

    Its now 19 days since starting cabergoline

    2 weeks since starting B12 and potassium

    Cricket's Sx associated with mobility, energy, and those "episodes" have remarkably improved! She isn't spacing out or anything.

    She still has limited use of her front/right leg, and general rt side sensitivity, but that is neurological and unlikely to improve.

    No more signs of neuropathy though! I was able to take all the towels and blankets off the floor because she can walk fine on the hardwood again. She's jumping again (even just jumped up on my lap), she's cuddling again, purring, she's even talking more, just overall more energy.

    All eating/drinking/peeing/pooping/breathing is normal, using the box again too.

    Her BSL is definitely being affected, so I'm monitoring as much as I can and changing her dose where it feels necessary.
    Staying cautious to avoid hypo, but appreciating the improvements. I imagine it'll be another week or so before we get to a more stable place.

    The only potential side effect to cabergoline I noticed is that she has been smacking her lips alot more- something she normally does when she's nauseated, but there's been no puking.
    This is already starting to subside.

    So overall, many improvements both with the cabergoline and supplements.

    YAY!
     
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  34. Wendy&Neko

    Wendy&Neko Well-Known Member

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    What an awesome Cricket update! She is loving the cabergoline. :)

    As for dosing, try to find a dose you can shoot regularly. We dose by how low dose takes the cat, or the nadirs. I find it just to hard to figure out what to do with the dose if you are moving it around all the time.
     
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  35. Olive & Paula

    Olive & Paula Well-Known Member

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    I agree with Wendy. Changing it like you are makes it hard to know where the depot could be. It's something you need to keep in mind should Cricket starts needing reductions. So happy to hear she's doing better.
     
  36. JeffJ

    JeffJ Well-Known Member

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    A really great report on Cricket. I am so glad to read it, that I read it twice!:bighug::bighug::bighug:

    Cricket might be feeling better as a result of not being in the high BG numbers all the time. I noticed when Leo goes in the 250-350 range, he gets more lethargic and has a washed-out look.
     
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  37. Teresa & Cricket

    Teresa & Cricket Member

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    Nov 5, 2018
    Yes, I agree that I need to find a stable dose, it's been a little shocking for her to need significantly less, so I am basically starting over.
    The confusing part is that her nadir occasionally runs through the 12 hr. If you look, you'll see there are times when sh is well below 200, and then keeps going a bit lower.
    So yeah, I'm trying to find a calm spot where she's safe, but still not too high.
    I'm loving that we are below 3u though!
     

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