Newly diagnosed with high IGF-1 - want to try medication

Discussion in 'Acromegaly / IAA / Cushings Cats' started by SallyGT, Nov 25, 2021.

  1. SallyGT

    SallyGT New Member

    Joined:
    Aug 4, 2019
    Happy Thanksgiving!

    This is my first post in this sub-forum. I posted a bit of background here a few weeks ago: https://felinediabetes.com/FDMB/thr...perthyroidism-any-advice.254911/#post-2872038

    She had her follow-up blood work to see how her T4 levels were responding to treatment and she was down to 3.4 (4.0 was the high threshold). But, there have been no positive effects on her BG levels.

    So, I managed to get my vet to send blood for IAA and IGF-1 testing. IAA was normal (3 vs. <20 for the reference range), but IGF-1 was very high (>521H vs. 12-92 nmol/L for the reference range).

    The MSU report says "The serum concentration of insulin-like growth factor 1 (IGF1) is increased and acromegaly is a likely differential diagnosis. It is recognized that increases in this hormone may occur as a metabolic response to diabetes mellitus in some cats, but this result is clearly higher than what would be expected in that case."

    So, my vet is unwilling to try medication and says that the only options if we want to pursue treatment is surgery or surgery + radiation. She wants us to go to some internal medicine specialists.

    Based on our reading here and in journal articles, we'd really like to try medication - Cabergoline - before considering a pretty invasive surgery.

    Since we are interested in trying a treatment which isn't exactly standard, and we'd like to get started quickly (she's currently getting 11.25 units of Lantus BID and not all that well regulated), we aren't looking forward to trying vet after vet until one is willing to try medication instead of jumping right to surgery. My question is, does anyone know a vet who would be willing to prescribe Cabergoline remotely? I have all of her medical records in electronic format, including recent full blood work-ups, etc.

    Thanks again for a great forum!
     
  2. Larry and Kitties

    Larry and Kitties Well-Known Member

    Joined:
    Dec 28, 2009
    It is not clear that a vet, without hands-on exam could prescribe cabergoline since it is off label use. It depends upon state law/regulations and if the FDA pandemic relaxations on telemedicine for pets is still in effect.
    https://www.aarp.org/home-family/pe...veterinary-telehealth-during-coronavirus.html
    In the closed FaceBook Acromegaly groupd there was a possible consultant list in a Dec 20,2020 post. I recommend that you join that group and find that post. I am not comfortable listing specific contact info here.
     
  3. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    I don't think people have had much luck finding a vet willing to do telemedicine, even if allowed. Do you think there is anyway your vet could be convinced? I can give you links to articles that describe cabergoline as a possible treatment. There are definitely risks, and costs associated with surgery.
     
  4. SallyGT

    SallyGT New Member

    Joined:
    Aug 4, 2019
    Thank you guys, both. Going to try to convince our vet.

    I've requested admittance to the private facebook group and am awaiting acceptance. I'd be fine taking Sally to a local vet if I knew upfront that the vet were willing to consider newer treatment options; I just don't want to put her through the stress of a vet visit if it were futile from start. With how long it takes to get an appointment, I envision months before we can get her treated and I don't want to wait that long.
     
    Last edited: Nov 26, 2021 at 9:54 AM
  5. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    I was first client on Lantus for my vet (later first on Levemir), first with a cat with acromegaly (that she knew about, found another once she knew what to look for), first cat to get SRT.

    You might want to print off some articles to give her. Start with the one linked here: https://felinediabetes.com/FDMB/thr...tus-remission-w-cabergoline-treatment.249982/

    The second section on this post lists options for treatment and pros/cons: https://felinediabetes.com/FDMB/thr...etes-mellitus-and-hypersomatrotropism.242965/

    We've only had a few members in North America pursue the surgery. One had to have SRT afterwards on both of her cats, since the surgery didn't get all the tumour, one had life threatening after effects from the surgery, but did survive. As that second post says, there is up to 10% risk they don't make it through surgery. Outcomes in the UK where they have done more of the surgeries, is much better.
     
  6. FrostD

    FrostD Well-Known Member

    Joined:
    May 27, 2020
    Another thought - could you call around to vets in the area? Just say hi, I have a cat with acromegaly and am looking for a new vet, is the Dr even willing to consider this medication? I wouldn't expect them to have much experience with acromegaly and probably none with cabergoline, but just a willingness to have a conversation.

    Side note - my cat went into remission on cabergoline. It's a little rare but does happen! See my spreadsheet from July of this year.
     
  7. SallyGT

    SallyGT New Member

    Joined:
    Aug 4, 2019
    Hi Melissa,
    That's exactly what my wife was thinking; we've already made a list of vets to contact tomorrow (though many may still be closed, for Thanksgiving). Thanks for sharing your story with Mr. Kitty. It's incredible how quickly his BG turned around after beginning Cabergoline. We'll find a way to get Sally a prescription...somehow. We're curious: Did Mr. Kitty experience some difficulty eating after beginning Cabergoline? We noticed the "eating on own little bit" note on the spreadsheet.
     
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  8. SallyGT

    SallyGT New Member

    Joined:
    Aug 4, 2019
    Hi Wendy,
    Thank you for the articles. We had the same thought (about pushing back with our vet), and including some journal articles to support our wishes. Surgery, we think, is not in order when a less-risky option has decent odds of helping Sally.
     
    Last edited: Nov 26, 2021 at 9:54 AM
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  9. FrostD

    FrostD Well-Known Member

    Joined:
    May 27, 2020
    So that I don't know. He has chronic pancreatitis, so at the time I thought it was a bout of that. It ended up being chylothorax and we nearly lost him (240mL fluid around the lungs). Was it related to cabergoline? Don't know, so far there's nothing in cat literature about it - but there are rare cases of pleural effusion in humans on cabergoline. Could be a heart problem, GI problem, not sure. We couldn't afford all the imaging needed to find the root cause at the time.

    To treat the effusion he had weekly chest taps for a bit, and we put him on Rutin which is a supplement with experimental use for chylothorax in cats. We have reduced him to 5mcg/kg every 3 days (recommended is 10mcg/kg every day or every other day).

    He's due for bloodwork in a few weeks, and we're hoping to do an echo as well as ultrasound early next year to see what might be going on.

    For the record - even if the cabergoline was the cause of the effusion, I would still make the decision to put him on it 100 times again. His quality of life has been SO much better - no poking and prodding, no swinging BGs. Hes been acting 5 years younger the past few months. I felt bad for him with the chest taps, but he seems to have stabilized.

    I think the worst I've seen happen here with cats started on cabergoline is some diarrhea for a week max.
     
  10. FrostD

    FrostD Well-Known Member

    Joined:
    May 27, 2020
    I think sometimes it's liability, they don't want the liability of a non standard treatment being used. Perhaps she may feel better about it if you say look I'll sign whatever release you want if that's the concern.
     
  11. Jackie55 & Bootsie

    Jackie55 & Bootsie Member

    Joined:
    Aug 29, 2021
    Bootsie is the first cat our vet has treated with Cabergoline. But our vet did some research and discovered how often Acro and IAA are a missed diagnosis in cats who present with diabetes. She said since 25% of cats with diabetes are diagnosed with Acro or IAA she is going to begin to check for her patients that do not respond to just insulin therapy alone. She and I are sort of figuring Bootsie out together. Boots has been on Cabergoline since Oct 21 and while I am not seeing a change in her BG levels yet they have come down a bit. And I have not seen any side effects. It is mixed in a chicken flavored base and she will actually like it off the plate. So good luck in you quest.
     
  12. SallyGT

    SallyGT New Member

    Joined:
    Aug 4, 2019
    Good evening all. We spent a good portion of today contacting other vets in the area and sending a lot of information to our existing vet. Unfortunately, we've completely struck out finding anyone who would even consider prescribing medication instead of surgery or radiation therapy.

    So, I'm wondering now if anyone either has or knows of a vet in Virginia (we live near Richmond) or one who is willing to consider telemedicine who would entertain the idea of trying Cabergoline. It seems like a very reasonable approach to try a low to moderate risk medication prior to a very major surgical procedure. If there are any other ideas on different approaches to getting the medicine, we are all ears. Thanks again.
     
  13. Purrberry

    Purrberry Member

    Joined:
    Dec 11, 2020
    Hello! I'm an "old poster" who's checking in this morning. I just wanted to chime in and let you know that the Animal Medical Center in NYC was willing to do and did a telemedicine consult for my cat Fred. This was back in June, but I'd definitely give them a call and see if they are still offering the service. It was a great thing for Fred, as even though we are in NJ, he does NOT travel well. He saw an IM veterinarian, Dr. Elizabeth Appleman.
     
  14. Larry and Kitties

    Larry and Kitties Well-Known Member

    Joined:
    Dec 28, 2009
    Problem is that poser is in Virginia and unless the NYC doctor is licensed in VIrginia he can't prescribe drugs fir a Virginia patient. http://www.dhp.virginia.gov/media/d...YQrxrh4RjAfz0upW0w6ZOgT2Ky0vVA9CZf8tCBgi02-d0
     

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