Duke
MegaDork
8/20/24 3:42 p.m.
Anybody have knowledge or experience? The regulatory situation seems to be... developing.
We have a 4-month-old kitten who presented with low energy about a week ago (Monday). She had been playing hard with a visiting kitten for a few days and we thought at first she was just tired, but after a day or two it was clearly more. Visiting kitten returned home but does not seem to have lingering symptoms. Thursday (day 3 of symptoms) we took our kitten to our vet who noted very high fever, cycling between 104 dF and 106dF. Vet started her on a daily NSAID which reduced the fever (but didn't suppress it fully).
After a day at home with little improvement, we hospitalized her elsewhere for observation and treatment. Hospital started fluids, Unasyn and then doxicycline antibiotics, and other supporting medications for appetite. After a day or two there, one of the attending vets noticed a somewhat distended belly and treated her for parasites, but that has not had notable effect on the bloating. With veterinary advice, we brought her home after 3 nights in care and are continuing home medications, including doxycycline, Oncior (NSAID), and Cerenia for appetite.
Blood test shows mild anemia and slightly elevated albumen. Hospital vet ordered a wider FUO panel Friday but we are still waiting on results. Results are expected tomorrow evening (Wednesday).
Fever seems to be abating somewhat, but she is still down on energy and clearly distended. Gait is slightly unsteady, but she can trot and make small jumps. Vision and hearing appear normal. She does still eat and drink but not with previous appetite.
We suspect FIP and are very interested in starting safe treatment as soon as possible if that is the case. Right now we are in day 8 of symptoms; day 3-4 of fluid retention.
I know that GS-441524 treatment has been recently approved (or at least allowed) by the FDA, but access may be limited. Our original vet did a re-check on her yesterday and they are the one who suggested FIP. She also said vets had not been allowed to prescribe it, and pointed us toward a Facebook group that can help procure the drug. Of course I am dubious of that general idea, but also, I'm sure that time is of the essence here.
Does anyone have experience or advice?
We lost a kitten in January to this. It was the worst. He had a hard start in life (the runt of 2 barn litters, brain damage from near drowning, partly blind), but we did our best to make up for it and give him a good home. He was thriving, and then at 8 months was very sick. He had the DRY type as noted below, progressed over about 3 weeks. He lost his vision, balance and we had to syringe feed and water him. He was euthanized when the paralysis took over.
We tried. He was so sweet. So was his brother, who we lost 2 months later to a different virus. No idea how either of them became infected.
FROM WIKIPEDIA
"Clinical signs:
There are two main forms of FIP: effusive (wet) and non-effusive (dry). While both types are fatal, the effusive form is more common (60–70% of all cases) and progresses more rapidly than the non-effusive form.[citation needed]
Effusive (wet) FIP
The hallmark clinical sign of effusive FIP is the accumulation of fluid within the abdomen or chest, which can cause breathing difficulties. Other symptoms include lack of appetite, fever, weight loss, jaundice, and diarrhea.[citation needed]
Non-effusive (dry) FIP
Dry FIP will also present with lack of appetite, fever, jaundice, diarrhea, and weight loss, but there will not be an accumulation of fluid. Typically a cat with dry FIP will show ocular or neurological signs. For example, the cat may develop difficulty in standing up or walking, becoming functionally paralyzed over time. Loss of vision is another possible outcome of the disease.[citation needed]"
I have a cat that survived FIP with meds from https://www.curefip.com/. The FB groups helped to a point but it quickly became clear most were marketing product and had "zones" the people worked. There was a lot of "The other people will kill your cat, only use the stuff we are selling"
With my wife ending up in tears after many interactions on FB, I found the above site. None of it is cheap but if the cat is a smaller breed it will be cheaper. Our Maine Coon started the process at 4lbs and after 12 weeks of shots he was a lot bigger. By the end each shot was about $80. Total was about $5K for 84 days of shots, but again, BIG cat.
Here is his story.
https://grassrootsmotorsports.com/forum/off-topic-discussion/leonardo-the-project-cat/187101/page1/
Ask me anything. Send an email and we can talk on the phone if you like.
Duke
MegaDork
8/20/24 4:55 p.m.
In reply to llysgennad :
I'm so sorry about your loss. Our kitten doesn't have those challenges, but she was adopted from a shelter a month ago and her initial history is unknown.
In reply to jgrewe :
Excellent, thank you. We will undoubtedly be in touch.
Our vet pointed us toward a particular FB group, FIP Warriors, who I am in contact with. This group has matched us with an "admin team" based on our geographical area, though they have so far indicated that they are not vendors themselves, only a group who interfaces with several vendors. At this point it seems that if we opt to start treatment under their assistance, they will try to connect us with local folks who have inventory available for immediate purchase, while our own order is in process.
I had located the first vendor site you mention, so it's good to see that someone I know has successful interaction with them. I'm not too worried about the overall cost, but I want to make sure it is going somewhere legitimate.
Again, there is an approved pharmacy formulating the medicine in the US, but that is only available via veterinary prescription - definitely our first plan of action. We're hoping we don't have to source it ourselves, but we want to have a Plan B.
There is an oral version available, and if at all feasible I would prefer to give that version due to the injection pain.
Thanks again.
In reply to jgrewe :
Thanks for that story, that's amazing. Zoomie was already mid to late stage when we figured out he was sick. He started out wonky, so it was hard to tell. Our vet told us about the studies and trials, but couldn't point us anywhere specific for help.
We spent thousands saving my wife's horse right after we got married. Big surgery removing dead lower intestines due to a ruptured diaphragm, we even watched from observation. It was pretty crazy seeing them lift out arm loads of intestine to be sectioned out. He was 19 then, lived another 18 years. Sorry to derail. The things we do for our animals...
Good luck, Duke.
Yea, I remember that name. There was another with a similar name. The oral stuff was just coming out and didn't have much track record. I think there is an issue depending on the type of FIP and the oral stuff. Something with the blood brain barrier.
The site I linked had great customer service. At one point we were going to be out of medicine before our next shipment was due. The change in dosage I talked about in Leo's story basically doubled the amount we needed. I ended up driving to Savannah, from St Pete, and met a woman in a hotel parking lot. Both of us felt like we were about to be taken down in a sting operation.
At the risk of sounding like the very people I warned you about on FB, I can't speak highly enough of them.
Duke
MegaDork
8/22/24 8:55 a.m.
In reply to jgrewe :
Hey, @jgrewe, is this your guy?
If so, he showed up in the Powerpoint deck of an Australian FIP researcher during a Cornell Veterinary School webinar we attended last night.
Orla is holding steady, but not thriving. She's still carrying a lot of fluid in her abdomen. Appetite is way down, but she is eating and drinking. Energy / strength remains very depressed, but she can walk and jump short distances.
We're going back to her regular vet this afternoon for updated bloodwork. We had a long phone chat with the emergency vet last night - her FUO panel was negative across the board, which is good because there are some nasty infections on that panel, but also bad because it didn't give us anything new to go on.
Her advice was to see if proteins were elevated at all in this afternoon's sample, and if so, start FIP treatment immediately. We'll see what the regular vet says today. I don't think either of them have any experience treating FIP. I'm planning on sending them both the slides from the lecture, which were very informative, even to a mostly-layperson.
Forwarded this thread to my sister who is a senior and experienced veterinarian. Here is here response:
"FIP is a bad deal but I have seen a few-and heard of more- success stories with the treatment that isn’t legally available in this country. It sounds shady as can be but through the FIP Warriors (not kidding about the name) fb group, you can get the medication and directions on how to give it. We’ve literally had hospitalized sick cats here and the owner comes to ‘visit’ and we leave the owner and pet in the room together for the owner to ‘do whatever they’re going to do’ we can’t legally be involved. But it really can fix it - and is the only successful treatment I’ve ever seen. "
Duke
MegaDork
8/22/24 10:45 a.m.
In reply to KyAllroad :
Thanks for that assistance!
It is legal for US veterinarians to treat FIP with antivirals that until very recently were only approved in Australia and the UK, specifically GS-441524. This is currently being formulated by Stokes Pharmaceutical in the US in oral format under license from BOVA.
Currently the FDA will allow vet practices to inventory the product in house if they petition for permission to do so, but some states may not approve this. However, nothing prevents vets from writing prescriptions for specific patients to be filled on an as-needed basis.
As I say, this is all very recent - as in, the last 6-8 weeks. I have a Powerpoint lecture from a Cornell Veterinary School lecture that I can share if your sister is interested.
In reply to Duke :
Not Leo, but definitely the same cat recipe.
Here is one of my favorite pics of him. The wife and I came home after an evening out and found him like this. It is difficult to get across just how much cat is in the picture. My best guess on a dimension to help with scale would be from the top of his head to his left foot is about 30". His head is about 5" below a normal door knob when he is trying to get our bedroom door open.
And yes, his tail is that berkeleying majestic!
I'm so glad to hear that the drug is available to vets now. The whole process of the shots was a huge ordeal for everybody, us and the cat. The last week of shots took two people to hold him down with me giving the villain the shot. He knew what was coming and wanted nothing to do with it. It took him a long time to want to be touched passed his shoulder blades on his sides.
Duke
MegaDork
8/26/24 3:17 p.m.
Update:
We're 2 weeks since onset of noticeable symptoms. 1 week since she came home from hospitalization with no firm diagnosis.
Last Thursday afternoon we went back to our normal vet and she drew some fluid from Orla's abdomen, confirming that it was probably FIP, though there is no real test to confirm. She didn't even bother with additional bloodwork. Despite the very new legality she was very willing to send a prescription to Stokes Pharmacy, the only US-licensed place compounding GS-441524 in oral format.
In fact, she had found that one of the other vets in the practice was treating her own cat, and that doctor lent us a few of her own pills so we could get Orla started right away.
By Thursday evening, Stokes had called to confirm the order and payment details. For $20 they offered second-day delivery on Saturday, which we gladly paid. In the end, it took about 18 hours for the pills to arrive. Stokes is selling 40 pills for about $530 including express delivery, which is around 7 weeks' worth at our current dosage. We may not even need to buy any more! That's not cheap but it is less than a quarter the price of going the grey market route.
There was noticeable improvement after her first dose. Four doses in and she is much improved - fever is going down, appetite is coming up, and strength and energy are returning. She is not over this yet and she is still retaining a fair amount of abdominal fluid, but at this point she has something like a 92% chance of returning to full normal, likely forever. Her regular vet didn't detect any signs of neurological or opthalmic issues.
In retrospect, the hospitalization was expensive and not particularly helpful, but it was the right decision at the time. That vet also ended up giving us pretty good advice. I don't regret the cost.
So... whew. We bonded really quickly with this one (mostly because she bonded so quickly with us) and she's just generally a really nice little cat. She deserves a full, good life. I'm glad that her long-term prognosis is good.
I remember Leo getting smaller as time went on because of the fluid going down. I think our vet removed some early in the process but warned that you can't drain it all.
The cat will start to grow quickly once its body starts processing food and absorbing the nutrients better.
Requesting picture of the patient!
Duke
MegaDork
8/26/24 5:06 p.m.
In reply to jgrewe :
All 4-1/2 pounds of her:
The belly doesn't look so big in this picture, but when walking she looks fairly pregnant... which is an anatomical impossibility. The fluids have started reabsorbing, but it may take a week or two.
jgrewe
Dork
8/27/24 10:19 a.m.
She doesn't know how lucky she is. The combination of when she was born and then to find staff like you will get her through this.
You mention 40 days of pills. Has there been progress on the time of treatment? The original trials done by the doctor in Ca. were probably overkill. It was 84 days of treatment and 84 days observation before the cat could be called cured.
Duke
MegaDork
8/27/24 10:28 a.m.
In reply to jgrewe :
Yes, we're very lucky.
Before Orla was fully diagnosed we were searching for any information we could find, and I happened to sign up for a Cornell School of Veterinary Medicine webinar on FIP. It was geared towards practicing vets, but they let me in. The webinar was given by Dr. Sally Coggins, who is an Australian FIP researcher and expert.
She said that her research still supports the entire 12-week course, but that cats who respond well could stop 2 weeks after symptoms are no longer detected, with a minimum course of no less than 6 weeks. We will go with our vet's advice, but I would rather be conservative than risk a relapse, especially since the cost would likely be no more than another $500.