Well, it's official.

Discussion in 'Acromegaly / IAA / Cushings Cats' started by Karen&Rocket, Jul 6, 2019.

  1. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    We just got Rocket's IGF-1 results back yesterday. 331. So, after a frustrating few months and a few posts on the Feline Health and Prozinc boards here, we finally have the answer as to why Rocket's numbers are so out of control. I cried my heart out yesterday... I don't think I've ever cried so hard. I posted on the Facebook FDMB group, and they recommend I tag @Wendy&Neko -- I hope you don't mind! :cat: Right now I'm doing SO much reading, but I'd love a helping hand as to how to get started. Rocket's (very angry) spreadsheet is in my signature.

    Just a little info on our current situation: Rocket is 10, and was diagnosed as diabetic in early Feb. I didn't know about home testing at the time, so for a short while we took him to the vet for weigh-ins and spot glucose tests. At one point in mid-march, while on 2U of Prozinc, he tested at 114 about 4 hours after his shot (at the vet). After that, it all seemed to go to heck. I finally started home testing in late May. And, the rest is in my spreadsheet.

    Here's where we're at right now:

    We've gotten advice to switch insulins. Is it true that Levemir is probably the best? He's currently on 5U of Prozinc 2x daily, which obviously isn't working well. Also, the moderator of the FB Acro group recommended Novalin R in addition to Levemir; what does that do? And how do you use it? And until we're able to switch, I honestly don't know how much to give him. He was getting occasional blue numbers, especially late during the overnight cycle.

    I'm researching treatment options. I'm leaning toward SRT (we have a consult appointment in about a week and a half), but I'm not sure we can manage the cost (we're going to try). We're going to have tests done, see what the risks are, and see what we can do. I know many treat with insulin only, so I'd love input on how well our kitties do... I'm so afraid of Rocket going through pain. :(

    Is diet still critical? We were feeding FF pates, some Tiki Cat, and a couple other low carb wet foods, but before we got the Acro diagnosis I switched to Young Again Zero as a last ditch effort. He likes it, but am I right in thinking to just go back to the wet low carb foods?

    These days, Rocket's appetite is still good, he drinks a fair amount of water, but sometimes his numbers are suuuuuper bouncy (the rest of the time they're high and flat, sort of). Which is why you see some dose reductions - recently, before his acro results, we were actually thinking he may be on too high a dose. Guess that wasn't the case.

    Our main vet was on vacation for the holiday, and his appointments are booked for a while, but he's been great about talking with us so I'll update him Monday.

    I know I have more questions, but my heart is still aching and it makes it hard to think. I also need to add that I'm having major surgery myself in three weeks, so that makes it hard to get started on new treatment. At least we'll get the consult done, and maybe some tests, and take it from there. I appreciate any advice you all have. Hugs to all of you. :bighug::bighug::bighug:
     
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  2. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Sorry, two more questions I just thought of:

    I'm currently still using the AlphaTrak2, which of course is expensive - it is true that the human meters such as the Relion are not accurate for high numbers? Does that matter, or are the low numbers what we're looking for anyway?

    His second vet said something about it being unlikely that he'll go into ketosis at this point, but I forgot to ask for an explanation. Any ideas?

    Thanks again :)
     
  3. Idjit's mom

    Idjit's mom Well-Known Member

    Joined:
    Apr 3, 2018
    I don't have any answers, sorry. Just wanted you to know I'm thinking of you and Rocket. Hoping for the best for him, and for you especially on your upcoming surgery. :bighug::bighug::bighug::bighug:
     
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  4. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    Sorry for the diagnosis. I'm in the same boat, diagnosed recently too. Sucks. The cheapest estimate we found was 8k. We aren't going to do it. My son has medical things happening and so saving money for anything he may potentiality need has to take a priority. Good luck!
     
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  5. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    I use an Alphatrak too. To keep costs down we often use freestyle insulinx strips with it.
     
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  6. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you so much. :bighug::bighug::bighug::bighug: to you too :)
     
  7. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you. And I'm so sorry. My heart goes out to you. And money is definitely an issue here too... I wish it wasn't, but there it is.
    I'll look into the Insulix strips. I've seen them on Amazon.
    :bighug::bighug::bighug:
     
  8. MrWorfMen's Mom

    MrWorfMen's Mom Well-Known Member

    Joined:
    Feb 18, 2015
    Novolin R is used to bring high numbers down. Lantus and Levemir are better at holding numbers than bringing down high ones so R is used strategically to get BG down so that the longer acting insulin can then hold BG in better range. You have to be very aware of nadir with both insulins. It is not something you should do on your own because you need to know when to use it AND when not to. There are several folks here (including Wendy) who can guide you and will be more than happy to do so should you want/need to go that route.

    Diet is just as critical to a cat with acro as any other. I would suggest keeping the kibble out of the picture if possible even if it is low carb.

    Acro tumours are pulsating so there can be days when it is more active than others and that might be why Rocket's spreadsheet is an interesting mix of signals.

    As upsetting as this is, knowledge is power and knowing what you are dealing with will let you treat Rocket in the best way possible. There is a drug, cabergoline, that some folks are using as an alternative to SRT that you may want to consider. I believe there was an acro cat here that went OTJ on it.

    As far as meters are concerned, human vs. pet meters readings are just different not inaccurate. Either type of meter is fine. Always good to have a backup and the Abbott Freestyle human meters use the same strips and take a tiny sample like the AT2. The AT2 is built on an older version of the Freestyle Freedom Lite human meter (if still available) so is identical except for colour. If the Freedom Lite is not available, then the Freestyle Lite works just as well but is smaller with a smaller display. The protocols here are based on human meter readings so switching is something to consider.

    As for the question of ketosis, I'd still test for ketones especially when Rocket is still sitting in high BG range much of the time. You never know when higher BG might be signalling an infection which is usually part of the recipe for DKA and our extra sweet fur kids are prone to UTIs.

    :bighug::bighug::bighug::bighug::bighug::bighug:
     
  9. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Again, thank you. You are such a hero! Thanks for the explanation about the Novolin R - I understand. I'm a little scared about the fact that due to the tumor, his BG levels are even more volatile than I thought. My schedule is different from day to day (I do freelance work), but I'm often home too, so hopefully I can stay on top of things (and I will ask for guidance when needed). I will definitely look into cabergoline. I've seen it mentioned a few times here, but don't know much about it. I'll bring it up with my vet too.

    I just bought a new pack of AT strips, but that's good, I can use them for reference and compare with the Freestyle if that's what I get. Is it the Insulinx strips you get for those (I've seen a post where someone used them in the AT also, and they were fairly close)?

    This is very daunting, but one step at a time. Tomorrow I'm doing some more reading, and getting together a list of things I want to talk about with my vet. I think I'm getting off the computer for the night... gonna spend some time with my kitty :) But I'll be back tomorrow. Thank you!!!!!
     
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  10. MrWorfMen's Mom

    MrWorfMen's Mom Well-Known Member

    Joined:
    Feb 18, 2015
    What you get as Insulinx strips in the US are sold as Freestyle strips here in Canada. The strips for Insulinx or Freestyle will work in the AT2 meter however my personal testing has always elicited higher numbers with the alternate strips. Others have obviously done far more cross testing than I have. The AT2 strips are the same strips but the strips branded AT2 have been batch tested to determine the code for the AT2 meter that will produce the most lab equivalent result. We know about 7 or 8 codes for cats on the AT2 meter which are 07, 08, 22, 37, 38, 92, 93 and recently reported code 14. Unless you have the right code for the batch of strips you buy, the readings will be in the ballpark but not as accurate as they might be.

    Personally after doing well over 1200 side by side same drop comparison tests with a human vs. the AT2, I went with the human meter for the majority of my testing and used my AT2 when I had a low reading that I wanted to double check and deal with appropriately as I found the Freestyle meters read a bit low at low range BG. Just food for thought. :)
     
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  11. Diane Tyler's Mom

    Diane Tyler's Mom Well-Known Member

    Joined:
    Sep 21, 2018
    @Keskat my thoughts are with you and Rocket and you for upcoming surgery
     
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  12. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    Hello and welcome. Sorry you've joined the not so exclusive club. :bighug:

    Like you, I immediately started researching when I got Neko's diagnosis. Didn't help that the vet just wanted to refer me to an internal medicine vet because she didn't know what to do. Fortunately I found help here. Getting the diagnosis was in some small part a relief, because I now had the answer about why Neko wasn't responding to insulin like other cats.

    By any chance did you get Rocket tested for IAA or insulin auto antibodies too? Test is also done by MSU. Some cats, like my girl have both. The answer can influence dosing decisions.

    OK, that was my turn for questions, now I'll try answering some of yours. First, no problem using a human meter, most of us here did due to cost. If you want to save money for treatment, that's one place to start - cheaper test strips. Yes the human meter shows lower quite a bit lower at high numbers, but who cares. High is just high. Personally, I'd rather use strips made for my meter, just so you know they work. I didn't want to take that chance with my cat. And until a few years ago, no one used the AT anyway. The company that makes that meter has done a very good marketing job with vets. As for dosing, your goal is to try to find a dose where Rocket will spend most of his time below renal threshold. That dose will vary over time as the tumour changes, but you'll have some times where you might hold a dose a while too.

    Insulin - I would encourage you to consider a switch to Levemir. A lot of kitties seem to do much better on it. Humulin/Novolin R can be used in conjuction with it, but you can wait until after the switch to Levemir. When you are ready to try R, we will try to find an experienced R person to "sit" with you, and help you to use it. There are important things to learn about using R, and even more, when not to use R. Again, no rush to start using it, it's an option. When you are ready to switch to Levemir, you can post in the Lantus/Levemir forum for advice on Lev starting dose.

    As for treatments, I did go the SRT route. Cost has increased a LOT since then. Besides cabergoline - for which long term effects are not known because it's so new, another treatment option is hypophysectomy or surgical removal of the pituitary. In the US, it is only done at very limited places. A few people here have gone to New York, where there is/was some donations helping to pay for the cost. What location are you considering for SRT? Just wondering if we have people here who have experience at that location that we can connect you with.

    Cabergoline is definitely a treatment option, but your vet may not have heard of it. The research done at the Royal Veterinary Clinic was not conclusive, and they recommend pasireotide instead. However, pasireotide is mega $$$$, so I don't know of anyone who has actually tried it outside of the trial environment. We have had three cats here go off of insulin on cabergoline, and most of the rest go to lower doses, and with some reduction in symptoms.

    One "treatment" option is indeed to just treat with the insulin they need, however high that may get to. How the acromegaly progresses in a cat treated with just insulin varies a lot. Acromegaly symptoms vary by cat, though there are a lot of common ones. SRT helped my girl, but didn't get rid of the tumour, just slowed things down a lot and gave her some years with good quality of life and very low doses of insulin. I have even seen acro cats treated just with insulin pass from other conditions, such as cancer, as they tend to be older cats anyway.

    Food, yes, low carb wet or raw only is best. Raw seems to help them feel fuller and help some of the acro hunger if that is one of Rocket's symptoms. I'd even suggst ditching the Fancy Feast and trying a wet food that is lower phosphorus. Acromegaly is hard on kidneys, as is diabetes. Getting him happy to eat lower phosphorus food may help you in the future.

    The possibility of ketosis is still there, if that's something he's prone to. I would keep testing for ketones regularly while he's in high numbers.

    There is no rush to decide what you want to do next. Take care of you first. :bighug: However, if you do want to consider SRT, I wouldn't delay overly long. The sooner you can treat, the better. But a couple months won't make a difference.
     
  13. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    This is my comparison chart. DAD39397-36E5-4908-9AE7-0387265550B2.png
    I got very uptight about the dose she was on esp when it got to double digits. Just remind yourself he needs what he needs.
     
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  14. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    Wendy also mentioned is hard on the kidneys and that's true. Cc is now early ckd. She's almost 16 so it's not really uncommon for any cat that age but the acro makes it more likely. Lots of water and a lower phosphorus food. I am feeding tikicat after dark line now.
     
  15. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Hello, and thank you so much for taking the time to help us. :bighug::bighug::bighug:

    Unfortunately we didn't have the IAA test done at the same time (I didn't know it was the same lab when it was sent, and our vet didn't mention it).

    Today I'm making a list of all the things that you all have suggested, so that I can be prepared for our vet visit (he's back from vacation tomorrow). Switching to Levimir is top of the list. I keep seeing Lantus listed on studies, etc., but it seems Levimir is the favorite here, which says a lot. As for starting R - I shake my head several times a day wishing I could reschedule my surgery, which I can't do at this point. I just want to dive in and get things better with Rocket. But time moves quickly, and I know we'll be moving along before I know it. I just hopes he stays ok-ish until then.

    We have a consultation appt. coming up at the Veterinary Cancer Group in Tustin, CA. The Dr.'s name is David Bommarito (radiation oncologist). He was recommended by our secondary vet at a cat care clinic. I'm also looking at a doctor at a VCA hospital in Woodland Hills who was recommended on the FB group, (Dr. Bruyette) but he's in Woodland Hills waaaaay on the other side of L.A. (we're in the suburbs 20 miles east of L.A.) which would be a long, stressful drive through L.A. traffic for Rocket. Probably not a good plan especially if he needs to go for multiple sessions. They also mentioned that he may have moved into research instead of practice. Speaking of driving, we also briefly considered a trial they're having at UC Davis for pituitary surgery - but, that's a 415 mile trip, and requires a few follow ups.

    Since we got our initial diabetes diagnosis, our vet has evolved quite a bit (in great part by taking the time to consider ideas I presented to him from members here, I think!), so I'll definitely discuss Cabergoline with him. I understand that the long-term side effects are not known. But, since like you said the cost of SRT is so high now, I want to know all the options. I'll look into Pasireotide too; I'm sure it's too expensive but I'm curious. I hope we don't end up having to go the insulin only route, but we shall see. I wish I could just do what's best for him without worrying about the cost. :(

    Any suggestions on low phosphorus food? I know Janet mentioned Tiki Cat Dark, which Rocket will sort of eat, but he's not crazy about it. I'll look into it too of course, but just thought I'd ask what you liked.

    It's going to be a long journey going forward, but I'm so glad to have help from you and the other amazing people here. Thank you. :bighug:
     
  16. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    @JanetNJ Thank you for the chart!!! Much appreciated. :bighug::cat::bighug:
     
  17. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Yeah I've been worried about that lately too. Are there any others you recommend? I've tried the After Dark but he wasn't super crazy about it.

    edit: Oh! I just noticed your "what to feed" link in your signature. I'll check it out today. Thank you! Huggle your kitty for me! :)
     
  18. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    You can use this sortable food list to look for foods under 10% carbs and ideally under 200 phosphorus, but you could probably bump the phosphorus up to 250 and still be OK if he has no kidney issues now. I used raw, more low carb and low P options.

    If you browse this forum, you’ll find a post on pasireotide costs. In Canada it was something like $5,000 every few months. There are two forms of the drug, Novartis Signifor, and Signifor LAR. The regular one means a shot every day, the LAR is long lasting and means once a month shot. My vet could not find pricing for LAR when we looked, it was too new.

    Don’t worry about not doing R for a while. I didn’t use it the first time I could have, because at that time there wasn’t an experienced R user with high dose experience that was posting regularly here. For something amazing, take a look at Biscuit’s post and SS on the Lantus /Levemir forum today. His first all green day. :D
     
    Last edited: Jul 7, 2019
  19. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    Look for food under 10 percent carb and under 250 phosphorus.
     
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  20. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thanks! I'll look for the pasireotide post, if only for information. And I took a look at Biscuit's SS... it went back up a bit into the yellows later today, but still lovely. Nice to know there's hope :)

    Is there a post somewhere explaining the differences/advantages/disadvantages of Lantus vs. Levemir? I know Lantus is more acidic, but that's really all I know at this point. I'll be talking to our vet tomorrow and while there is a ton to discuss, getting off ProZinc will be the first step.
     
  21. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    The acid base of Lantus vs. Levemir can be a big deal, especially at higher doses. Some people have reported a personality change, for the better, after switching to Lev. I noticed Neko purred through her shots, instead of occasionally walking away while i shot. Ie. less fur shots. :) There was a Think Tank post a while ago about switching, it not many high dose cat parents posed. Lev “seems” to have slightly better duration and quite often flatter cycles, less bouncy.

    This post also has some info: http://www.felinediabetes.com/FDMB/threads/what-is-the-insulin-depot.150/
     
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  22. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you! This info will be very helpful to share with our vet - he’s mentioned Lantus but not Levemir so I’m not sure he knows much about it.
     
  23. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    You are getting good advice from others. We just lost Leo this weekend, after 4 years of diabetes. He was an Acro cat. He lived 33 months after SRT, and if I had to go back in time and do it again - I would do it in a heartbeat. The reduction in insulin demand - allowed me to mostly regulate his BG, even though his BG did remain bouncy. We miss our precious Leoberry dearly.
    Leoberry's Eulogy 2006-2019

    You can see the 3rd tab on Leo's spreadsheet shows the insulin reduction over time after SRT.

    You talk about driving to the other side of LA. I drove Leo from Austin TX to Ft Collins, CO for his SRT in Sept 2016. That was 2 days each way. We stayed in Ft Collins each night in a pet friendly hotel.

    Leo loved the different flavors of Fancy Feast Classic - a very healthy food for diabetic and Acro cats.

    Your kitteh is still real high with BG. I know it is hard. A key to good health is getting those nadir numbers lower.
     
  24. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Oh Jeff, I read everything you've written about your beautiful Leoberry these last few days, and my heart is aching. The photos you posted say it all. I am so grateful that you would take the time to help me when you're going through the loss of your best friend. Thank you. The fact that you said you would do it again in a heartbeat... I think that's what I need to hear right now. Rocket is only 10 and I can't bear losing him yet - he's still so young! And just a really cool cat. Have I mentioned he's harness-trained? We've been "walking" him every day since he was three months old. He really is my best friend. You understand, I know. As for the drive, I think I would drive just about anywhere... but Rocket gets very stressed with car trips, which is why I'd prefer to stay close-ish, if possible. But, if we have this consult in Tustin and we don't feel like it's the right place for us, we'll definitely see what other options are out there. There's even a surgical clinical trial going on at UC Davis (400 miles north of us), but I'm not as comfortable with the risks of pituitary surgery.

    Unfortunately I have major surgery myself coming up in three weeks, which really really bothers me - I'd rather just focus on Rocket. But, it can't be postponed. So, first thing will be to change his insulin hopefully tomorrow (Prozinc obviously isn't working), go to his consult appt. next week, and take it from there. Right now I'm going to take a good look at Leo's SS and your thread about his SRT treatment. Please know I appreciate your help immensely... and know that even though Leo is not physically here anymore, he's helping other kitties who are going through what he did. Thanks to you both. :bighug::bighug::bighug:
     
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  25. JanetNJ

    JanetNJ Well-Known Member

    Joined:
    Jun 8, 2016
    If my cc was only 10 I would be more inclined to do the srt treatment as well. My cc is almost 16 and I'm not sure it would add much more time with her at this point. I really hope you have wonderful results
     
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  26. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you. And at at 16 you also have to be concerned about putting her through treatment itself. You're making the right decision... I won't know what we're going to do until we meet with the other doctor (and discuss costs, and other details), but if Rocket were 16 I think I would treat what I could with insulin, etc., and enjoy each day for the gift that it is. :bighug:
     
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  27. Wendy&Neko

    Wendy&Neko Senior Member Moderator

    Joined:
    Feb 28, 2012
    My Neko had SRT twice, first time at age 11, second at not quite 15. Since she was Maine Coon cross, still might have had a few years in her. Healthy older kitties can undergo SRT. It does get risky the longer kitty has had acromegaly, as the likelihood of impact to the heart grows and SRT involves several days of anesthesia. The radiation itself isn't harmful.

    For our SRT trips, first one was three days of driving each day. Before that, Neko hated the car, but we figured we had no choice. Feliway and Rescue Remedy really helped, and she did get used to car rides after 6 long road days. Second SRT was by plane.

    More reading on SRT adventures - here is Punkin's trip post.

    And Neko's trip
    CSU Day 1
    CSU Day 2
    CSU Day 3
    CSU Day 4
    I was extremely lucky that Lu-Ann (Grayson) and Tracy (Leo) went to CSU just three weeks before me, so I was able to get a lot of my questions answered.
     
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  28. JeffJ

    JeffJ Well-Known Member

    Joined:
    Jul 7, 2016
    Thank you for the condolences for Leo. Our home feels so empty right now. We miss our dear Leoberry so very much.:(

    Leo's SRT thread is still in my signature. Both Wendy and I had good experiences there. If you have questions, let me (or Wendy) know. I hope you find a good solution that is maybe closer to you.

    That is very cool, your kitteh is harness trained. From 2009 - 2016 we had Scoobs. We adopted him as a neighborhood stray. He used to walk with Theresa and the doglets, with no leash.
    A few times, people said to Theresa "There is a cat following you."
    Theresa would respond, "Oh that is our kitteh Scoobs, he likes to go walking with us."...as if that was the most natural thing in the world.
    All the neighbors loved to see Scoobs walking with his family.:D
     
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  29. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you. I’m outside with Rocket right now - he’s harness trained, so I take him out for a little while every evening at sunset. It’s his favorite time. :) But tonight after dinner I’ll sit down and read everything. :bighug:
     
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  30. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    You’re welcome. :) And thank you for including his info in your signature. Like I said before, you’re helping so many kitties (and people) who need it. Beautiful story about Scoobs; I could really picture you all walking together. Lovely.
     
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  31. Larry and Kitties

    Larry and Kitties Well-Known Member

    Joined:
    Dec 28, 2009
    R insulin (if purchased from Walmart) is also a lot less expensive than Lantus/Levemir. With my MurrFee I never had to courage to use R together with Levemir. Instead I used N. At the end I was using 25 units N and 25 units Levemir twice daily. I used the Levemir vials, I also used Levemir pens with pen needles since I picked some up from Craigslist.
     
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  32. Karen&Rocket

    Karen&Rocket Member

    Joined:
    Feb 4, 2019
    Thank you. This is something I need to learn how to do (using the R or N). Realistically I'll probably have to wait until after my surgery in two weeks or so, since I'm the one who does 95% of Rocket's insulin shots. But I'll come here and ask for some help when I do! :)
     

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