I'm a nervous wreck!

[Sarah]

I am so glad to have found this website while I was nervously googling fluctuating PCV. I’m so happy this community exists because I’m a wreck. A little background:

I have an almost 9 year year old American Staffordshire Terrier (aka pit bull) named Phoebe who I love beyond what is normal or healthy. She first started showing symptoms in May 2018. (Labor Day weekend) She became very lethargic and stopped eating. Food is Phoebe’s favorite thing so I was definitely alarmed. I got her into the vet and they ran all the tests and called me the next day saying her red blood cell count was low at 25% and they needed to get her on Prednisone immediately. They weren’t 100% sure it was IMHA or something else was causing the anemia (some sort of cancer). She responded very well to steroids and her counts came back up in the 40’s. Once we started to wean her off, her counts dropped again. She was put on Prednisone and Cyclosporine. Mid-August her blood work was finally normal again. We began tapering her off the steroids while keeping her on Cyclosporine. She was doing alright until December. Her counts dropped AGAIN. My vet felt this was beyond them and recommended a specialist.

She rapidly deteriorated over the weekend in mid-December and I thought I was going to lose her. I got her to the emergency vet/specialist and she was at 20%. They gave her a blood transfusion and kept her over night which brought her back up to 31%. They did ultrasounds and a battery of non-invasive tests to rule out any sort of cancer or other source (tick-borne disease) that could be causing the anemia. They officially diagnosed her with IMHA. She was put on Prednisone, Cyclosporine, Mycophenolate, and Prilosec. She’s been doing great with her PCV and fluctuating between 43% and 44%. Of course she’s been dealing with stomach issues on and off as well as a relentless UTI. She’s been on Cipro (was resistant) and Nitrofurantonin and just recently got a shot of Convenia which seems to have caused another bout of diarrhea and vomiting. (although her regular vet says it shouldn’t have caused that. The drug manufacturers website says different! COME ON PEOPLE!)

She has tapered down to 1/2 a 20mg Prednisone every other day, as well as down to 1 Cyclosporine a day from 2. Her PCV was down to 39% on Wednesday. The vet wasn’t too concerned and wants to continue tapering her completely off the Cyclosporine and see her in 3 weeks, BUT I AM FREAKING THE F OUT! I read on this site that 5 up or 5 down is ok. But I’m scared because she hasn’t had that big of a jump down unless there’s an issue. Has anyone experience a 5 point drop and them bounce back?

I’m just so afraid to see her deteriorate like she did back in December. She’s been snubbing food since she got that Convenia shot on Tuesday and has thrown up a few times and had diarrhea. I’m really hoping her stomach upset and not wanting to eat is due to that and not due to her declining again.

I’m grateful for an input or support. I know how much we all love our babies and how crappy this disease is!!! Thank you so much to anyone who has read my nervous ramblings.

[Vally]

Hi Sarah and Phoebe and welcome, although I’m sorry you’ve had to come looking for us.

Totally understand the wreck. We have all been there where it just all seems impossible and you don’t know what to do.

First of all 39 is still in the normal range, so don’t panic. Having said that, it is a bit more of a drop than we like, but it could be a number of factors. How hydrated Phoebe was when the test was done, the more she drinks, the lower the PCV reading will be – we do not encourage not letting out pups drink before a test (I seriously considered doing that to poor Bingo). Stress will affect readings, the temperature.

I’d suggest that you don’t do any more reductions until another blood test is done and Phoebe is stable for a bit. I certainly wouldn’t lower anything.

Also, don’t reduce more than one medication at a time and never more than 25-33% of a drop. I’m wondering why the dosage wasn’t simply lowered, rather than going to every second day. Every second day is the normal but usually when they are on the lowest dose.

I also found that when a medication was lowered, there always seemed to be a drop in the PCV, as if the body needs to adjust. It would on the next test be back to where it should be.

Make sure prednisone and mycophenolate is given with food. Cyclosporine, instead should be given away from food, ideally 2 hours.

Mycophenolate in particular, but also prednisone, can cause stomach problems. It would be good if Phoebe was on something like Sucralfate. Again, this needs to be given 2 hours away from meds. I’d be happy to make up a chart for you. I love making people get up at 4 in the morning to start giving meds :)

Please ask anything, we’d love to help.

Regards,
Vally (Angel Bingo) and Saba

What does Phoebe weigh?

[Sarah]

Oh my goodness, this is the 3rd time I’m trying to write this. My first post isn’t appearing anywhere and I accidentally just navigated away while I was typing my last post. Let’s hope this works! lol

1.) Phoebe is 60 lbs of velvet hippo/manatee/potato

2.) We’ve only ever tapered down on one medication at a time very slowly while monitoring her blood work. She’s seeing a specialist currently recommended by her regular vet. They work in conjunction.

3.) Maybe the vet wasn’t too concerned with her dropping to 39% because she just tapered down to 1 Cyclosporine on March 15th and her blood was taken March 20th. Perhaps her body is adjusting? I haven’t been able to speak with her yet. My parents took her to her appointment because I was working and they don’t deliver the best notes lol I do get emailed discharge instructions, but I would like to speak with the vet to tell her my concerns and hear why she isn’t concerned.

Here are the medications she’s currently on:

1.) Prednisone 20mg – 1/2 tablet every other day. She was on 1 tablet twice a day but has weaned down since December to her current dosage.

2.) Mycophenolate 500mg – 1/2 tablet twice a day. She’s been on this dosage since December and it remains the same.

3.) Cyclosporine 100mg – 1 capsule every day. She was on 1 capsule twice a day since December but weaned down to capsule a day March 15th. The vet wants her to continue weaning down to 1 capsule every other day on March 29th and then to stop completely on April 5th. She’d check her blood work the week of the 8th.

4.) Prilosec 20mg – 1 tablet twice a day for her yummy.

5.) Metronidazole 250mg – 1 tablet every 12-24 hours as needed. She’s on this for diarrhea and horrendous gas caused by the other medicines. It really seems to help.

6.) Cranindin Supplement – 2 chewable tablets daily for urinary health. She’s had relentless UTI’s from the Cyclosporine.

7.) Nitrofurantoin 115mg – She was on this every 8 hours for an awful UTI, but she received 2 injections of Convenia recently and now she’s on 1 capsule every evening. We’ll be checking her urine at her next appointment and hopefully the infection is gone. It was resistant to Cipro.

I appreciate your input and suggestions. I’m wondering if I should have her regular vet check her blood this week to see if her numbers look better or is that overkill? I hate to wait 3 weeks. But her energy levels are good. Her gums looks good. Her appetite hasn’t been the best, but her tummy has been upset since the Convenia shot last week. She’s VERY interested in treats and anything I’m eating. She’s just not thrilled with her own food right now apparently lol I want to trust the specialist and not scare myself to death. I’ve read about how quickly some dogs decline. Luckily with Phoebe in her 2 relapses since last May when this all began, she’s always declined very slowly and given me pretty clear warning signs. I just want her to be better. She is my doggy soulmate.

[Vally]

Sarah, if it were me, I would have her tested only because I would be a basket case until tested. Hopefully the next test will put your mind at ease.

Also, I’m in Australia, and I’m guessing you are in USA, so because I’m usually asleep when you’re awake, there may be a gap before I answer. I always check though.

Regards, Vally

[Sarah]

Thank you Vally! I appreciate your advice more than I can say. My friends, family, and my boyfriend are sick of me, I’m sure! I don’t have any children, my dogs and cats are my furry kids and they’re so important to me. Especially Phoebe. I adopted her from my local pound here in Florida. She was scheduled to be put to sleep the following week. “Doggy death row” They suspected she was used as a bait dog in a dog fighting operation. She was terrified of everything and covered in bites and scars. I’ve suffered with severe anxiety the majority of my life. I couldn’t let her die. She needed a second chance. She wouldn’t walk on a leash and wouldn’t move from one spot for weeks. I had to carry her outside to go to the bathroom. She has come so far and is such a wonderful sweet girl and despite what she’s been through, she loves all people and animals. I’m heartbroken that she’s going through this but she’s so tough.

[Sarah]

I spoke with her specialist this morning and she did make me feel a bit better. She explained why the drop to 39% didn’t concern her. She said because Phoebe has been on so many immunosuppressants for so long, it’s suppressing her bone marrow. She said just last week she was weaning a dog off Prednisone and she dropped to around 34% as her body was compensating, and the next check she was up well over 40. She said if I’m worried they’ll be happy to check her again before decreasing, but she felt confident that Phoebe would bounce back by her next check. She wants to get her off the Cyclosporine so these UTIs stop so she doesn’t develop kidney stones. I’m doing my best to trust her judgement, but will continue to be nervous and consider taking her for a check maybe later this week.

A question I wanted to ask was, do you have any suggestions on gum checks? I swear every time I look at them they look different LOL One minute they look great, and in different lighting or if she’s been sleeping, they look pale and I freak out. She’s acting fine. She’s eating, drinking, hunting lizards in the yard…. but if I think her gums look pale I get scared to death. And the vet wants me to check. DOES SHE NOT KNOW ME AT ALL?! lol I’m so paranoid. I’m sure Phoebe is so sick of me. Are they paler if she’s been sleeping? Is there a good time to check them? Ugggggh this is exhausting.

[Vally]

Oh Sarah, Phoebe is a very lucky girl to have found you. Yes, nobody around me understood why I was so worried about Bingo. A few people suggested I have him put to sleep and get another dog. I told them, he’s not a battery to be replaced when he’s not working properly, so yes, I was also very grateful to find a site, like this one, with people who understood. When that site closed down, Patrice stared up this site.

I like the sound of your specialist. It’s important to suppress the immune response in the crisis, but at the same time, they can become over suppressed if on too long. Checking her gums is a good idea and will help you. Don’t check them when she’s just lazying about as they will be pale. Check them when she’s active. Dogs work differently to humans in that they store their blood in their spleen, and when needed, it’s released. So for example, Phoebe is lying about, her gums will be pale. The doorbell will ring and she will jump up and her spleen will immediately respond by releasing a supply of blood. I remember one lady here, her dog learned to smile because she was checked so often. The way she acts too is a good indication, so if she’s out there chasing lizards, she’s feeling good.

Welcome to the Paranoid Pet Owners Club – no admission fees.

Vally
xxx

[Sarah]

Thank you Vally! That information is incredibly helpful! The first thing I did this morning when we woke up was check her gums while we were still laying in bed and I immediately freaked out. Then after she’d been up and had breakfast and been outside, I went to take a picture of them to send to my friend and they looked bubble gum pink and lovely. She has seemed so good today. She ate without any issues, has plenty of energy and is spunky. I’m still worried about her gums of course lol I made myself a checklist of all the things she stopped doing when she was doing badly before. She wasn’t playing the yard, chewing her Nylabone, eating or drinking, barking or showing any interest in anything, she was very sluggish to get out of bed or get up to go outside. But she’s doing allll of these things now. I have to keep reminding myself of that. I just feel like I’m waiting for her to take a sudden turn for the worst. But if she’s still on all these meds, it would prevent that, wouldn’t it? The times she’s gotten bad she was off everything. She’s weaning down, but still on plenty of stuff to hopefully keep her immune system somewhat in check, right? Ugh I wish I’d remembered to ask my vet that early. She’s responded so well to this treatment and this is the 2nd time she’s been considered in remission. I hope it sticks now that I’m working with a specialist who seems to really know her stuff.