Auto-immune disease and bleeding from the mouth

I'm new and came across this forum in my never ending research of auto-immune disorders and would like some thoughts. I have a 9 year old cat that was diagnosed 2 years ago with an auto-immune disease. The vet does not know which one unless we do bone marrow testing, which we may do this summer. Max is currently in remission and doing really well.

One of things that has puzzled me concerning his illness is the bleeding from his mouth. He doesn't cough it up but rather blood would just drip from his mouth. The vet said that it seemed to be seeping from his gums around a certain tooth. It was explained to me that because he was so anemic, his blood couldn't clot, therefore it would just drip out. However, he never would bleed from any other area. For example, I started him on a different flea medication during the last time he was very ill (he has a SEVERE flea allergy), the hair at the application site fell out (I was warned when using this flea medication that it was a possible side effect). While he was scratching the area, he scratched himself with a claw. The wound clotted just fine. He never bled from any injection site, nothing. He would ONLY bleed from that area of the mouth. I would think that if his platelet count was so low that he'd would just seep out blood, why wouldn't any sort of abrasion just bleed uncontrollably? That has always bothered and confused me. The vet didn't really give an explanation when I asked. When he would eat, I could tell he had difficulty chewing. I mentioned all of this to the vet and he said that he couldn't see anything wrong with that tooth and even IF we wanted to pull it anyway, Max would have likely bled to death at that time. He bled from his mouth 2 years ago, and he bled from his mouth when he relapsed in November. It's always the same area.

When Max first became ill, he required an emergency transfusion right from the start and was put on Prednisone. His recovery was slow but steady. When he relapsed in November, he wasn't anemic enough at first to require a transfusion. He was just started on Pred. He never, at that point, responded to medication. The vet, just kept upping the dose, trying desperately, to suppress what was causing the bleeding. The highest dose that he was on was 20mg a day, when the normal high dose is only 10mg. Instead of improving, he just got progressively worse. Eventually, he did require another transfusion. After that transfusion, he started responding and now is, again, in remission. However, this time Max will be on a maintenance dose of Pred. for the rest of his life.

The vet is convinced that Max has an auto-immune disease. I accept it but part of me wonders if its not something else. That is the reason why I have pretty much decided to have the bone marrow testing done. I will have a definitive answer, yes or no, that Max has an auto-immune disease. If the results don't show anything, then it will force my vet to consider other ideas. I don't want people to think that I don't trust my vet. I do trust him and his knowledge. He has been great to us and has gone above and beyond for Max. He knows we don't have a lot of money and has worked with us not only in payment plans, but I know for a fact that he doesn't charge us for a lot of things that he should.

Even though Max is doing well now, I haven't stopped researching and looking everywhere I can for information about a cat that has symptoms similar to Max. I haven't really gotten anywhere with it, so if anyone has any thoughts, please share!

My heart goes out to you. My Liz had her first bout with anemia as a result of a haywire immune response last September, and my vet is treating as IMHA/AIHA. Very,  very scary stuff, I know. I can't speak to the bleeding from the gums (her problem was abysmally low HCT, rather than platelets - although her platelets are falling now), but other than that, what you're saying does sound immune-related, even if it's not IMHA/AIHA.

What counts were low (and how low) when your boy required the transfusions? In your research, you've probably discovered (like I did) that things like IMHA/AIHA are extraordinarily rare in cats as opposed to dogs, so it's understandable that this may be something your vet may not have a lot of experience with, when it comes to cats. Is there a specialist he can refer you to - or even consult with him/herself?

I'm thinking of you.  These are some scary woods we're still fighting our way through on my end too, and I know how frustrating it can be.

Do they recommend making them space helmets out of plastic bags and tethering them to a lawn stake in the back yard for "play time"? And I love the caution to "not leave the child unattended."

Thanks for your response.

Two years ago, when he required the first transfusion, his HCT was 9.5. When he relapsed in November, but DIDN'T yet need a transfusion, his HCT was 20. He had that CBC test November 28th and by December 19th, it had fallen to 13. That is when he had another transfusion.

When this first happened, the vet guessed, because we didn't do marrow testing, that he had PRCA (Pure Red Cell Aplasia ). Now I think he's leaning more toward IMHA.

He has offered to refer us to Ohio State University but it is several hours away and we literally can't afford it. He is consulting with another vet about Max's case. He has also  been researching and trying to find alternative treatments. At our last appointment, he mentioned switching Max over to Cyclosporine but that also costs quite a bit more.

I'm sorry about your Liz. It is really scary seeing them go through this and feeling helpless. You said she had a haywire immune response? I ask because, Max has a very very severe flea allergy. When he first became ill, it was around the time that we had a flea issue with all of our pets. At the time, I assumed that he was acting like he felt poorly was because of the allergy. After we resolved the flea issue, he just never got better and then he started bleeding. Now he is on flea treatment year round...BUT I wondered at the time if a prolonged exposure to his allergy (fleas) could have sent his immune system into hyperdrive. I asked the vet about it then and he said it was possible. I just recently asked him about it again and he said that anything with the immune system is possible, so yes, it could have happened, but he's never heard of such a thing.

My Stumpy has an auto-immune disease called LPGS (lyphocyctic plasmacytic gingivitis stomatitis). We discovered he had it when he was around 11 years old when we noticed blood dripping out of the gums in his mouth. Probably coincidentally, he went for years without fur on his torso. We knew that was an allergy condition, but didn't isolate the allergen until one of our dogs died and his fur grew back within a week. He was allergic to our dog all those years!

The vet thought that he had an auto immune condition all along, as allergies can just be another form of an auto-immune disease. It just transferred itself from his external skin to the gums in his mouth as he aged. The LPGS can only be diagnosed thru a biopsy of his gum tissue, and we had that done just so we knew how to treat him.

Auto-immune diseases can be scary, as its a bodies reaction to warding off what they thought were foreign invaders. In LPGS, the body thinks that teeth are foreign invaders, and we eventually had to have all of Stumpy's teeth removed. We thought we were going to lose him around age 11, but he's about to turn 17 in a few weeks and he's still going strong - thanks to the diagnosis and treatment.

If it were me going through your issue, I would find out what type of auto immune disease is suspected and what treatments are available for it. In Stumpy's case it was easy - remove his teeth and control the disease. If there is no way to treat the disease, then it becomes an issue of how important is it for you to find out what is wrong? If there is no way to guess what auto-immune disease your baby has and a surgical biopsy is the only way to identify it, what will you do once you find out? And if that biopsy doesn't isolate anything, what more are you willing to do (or how much can your baby tolerate)?

Thank you for your post, momofmany.

Right now, the vet is leaning toward IMHA but before that he thought it could be PRCA. Honestly, I don't think he really knows at this point.

Right now, Max seems completely fine and acts 100% normal. However, whatever this is its like a monster in the closet that you know could pop out at any time. I'm never comfortable and I'm always worried that I'm going to walk into a room and find blood all over the floor. My boyfriend and I both actually have dreams about it on a regular basis. The bleeding was traumatizing for Max, my boyfriend and I. I compulsively check his mouth, looking for blood, even though I know its not there.

The reason I want to know exactly what this is...is so I can do whatever I can to give Max a fighting chance. He's only 9 years old. He should have many more years ahead of him. Also, I want to know for my peace of mind. I want to know what is happening to my cat.

As for what I'll do with that knowledge when I do find out? I don't know yet. I'd have to make those decisions when the time came. One thing that is the most important though and will always be forefront in my mind...his quality of life. I don't want him to merely survive, I want him to be happy.

momofmany, you said that treatment for Stumpy was removing his teeth and controlling the disease. How is his disease being controlled? With medication? Also, did he have mouth ulcerations?

How low did Max's platelets get? IMHA can be present with not only an immune attack on the RBCs, but also on the platelets, causing thrombocytopenia. It's my understanding that when IMHA and thrombocytopenia occur together, that's called Evans Syndrome. (As if one of the two weren't scary enough...)  I know that one of the signs of dangerously low platelets can be bruising and bleeding. Is he bruising at all (I know, hard to tell around the fur)? I'm thinking - and this is just a theory - maybe low platelets or RBCs aren't causing the bleed from the one spot - what if they're just causing a spot that's already predisposed to bleed (a below-the-surface FORL, or other tooth/gum issues). It could be two different issues: an area in her mouth that's sore and has some sort of condition that lends itself to bleed fairly easily, and when it does bleed, it bleeds and bleeds and bleeds because the low platelets are causing the trouble with clotting and stopping the bleeding? I'm not saying that finding/fixing the cause of any kind of dental pain would be easy/cheap (believe you me, I know how those things add up), but I don't know about you, but when I feel like I'm at least able to understand what's happening, it doesn't exactly do much to quell the worrying about blood counts, gum color, etc., but it does at least make me feel... I don't know... armed?

Below is my experience with Liz's IMHA. It may be a bit off your original topic and I don't want to indulgently trot my issues out there. I don't know about you though, but sometimes hearing about other IMHA experiences helps me - if not in finding answers from what happened to someone else, then just in feeling like I'm not alone.

We don't know what triggered Liz's IMHA. In mid-2010, we moved her across country, where she promptly got sick (unidentified intestinal swelling). The meds they put her own to treat it (and that fixed it!): Pred, Flagyl, and Amoxi-Drops, preceded a horrible condition that (I'm not kidding you) caused her skin to turn bright red all over her body and fall off - fur and all - in patches. One of the meds apparently caused it, according to the biopsy, and we know it wasn't the Pred since that's what she's on with the IMHA without recurrence. We stopped all heartworm preventative (agonizing decision, but weighing the pros and cons, the best decision for us), and will not vaccinate without titres now. The next spring, she developed inhalant allergies. She never had them back home, but apparently the new home across country had allergens that she reacted to. Pred helped control them. So, in September, almost a year to the day after her intestinal issue, Liz started eating cat litter. We could not keep her away from it. It was clumping litter, so I freaked out, not wanting it to swell and cause an obstruction. X-rays and blood tests showed us what we needed to know: the litter would pass through, and her HCT was dangerously low (10.5). It was odd because, other than eating the litter, she was acting fine. Later that night though, she started to act lethargic and it only got worse. Long story short, I couldn't bring myself to transfuse (they wanted to keep her overnight for it, and she hates being away, and they weren't sure she's survive.) All that and limited finances, made us decide to keep her comfortable (and get her pred injections, which later turned to home oral administration of lower doses.) She went jaundiced and barely reacted to us. I'm not kidding you, we were minutes away from taking her to have her put down, when I decided to wait until morning. In the morning, she was still just as sick, but there was a bit more spark back in her eyes.

We never did pinpoint the cause. There were no immunizations, allergy season was on it's way out, we don't think she got into anything toxic. It just ... happened. When I said "haywire immune reaction" I just meant in relation to the nature of the disease - attacking the body when it shouldn't.

We're tapering her on the Pred right now, and I'm beyond nervous. We haven't had a relapse yet, and I've heard they can be terrible. Her HCT has surged to 52 - just north of a high end of the reference range. I probably should be thrilled, but something doesn't seem right about that.

I found a wealth of help from some online IMHA sites for dogs and also reached out to Dr. Jean Dodds, an expert in the field of IMHA. I can private message you about those you'd like.

Anyway, hang in there. Sounds like you've got a great vet who's willing to make calls to colleagues for you and is invested in helping you manage this. It's not easy, but no matter how long I have Liz (she's only 7.5), I'm already so blessed she's made it as far as she has. As horrible, horrible as this disease is, it definitely makes you appreciate each day more with them, doesn't it?

Mdawn1 said:

momofmany, you said that treatment for Stumpy was removing his teeth and controlling the disease. How is his disease being controlled? With medication? Also, did he have mouth ulcerations?

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LPGS is all about horribly painful mouth ulcers, and every cat reacts a little different to both the disease and treatments for it. Some cats will have all of their teeth extracted and the disease still remains and spreads into their throats. There is laser treatment available for when this happens, but I hear that most cats that go thru this are in more pain afterwards - it's a last ditch effort to save their lives. The pain is so bad that they stop eating.

Most cats with the disease have their teeth pulled, and are put on steroids for the rest of their lives to stop any inflamation that can still occur. Pulling teeth can eliminate or at least slow down the pain, but they still have the auto-immune disease. Many cats are put on immunity boosters. My Stumpy is simply on good quality food and steroids, with an occasional antibiotic when his immunity gets low from the steroid use (every few years).

Kristin,

Thanks for telling me about your experience with IMHA. I WANT to hear from others and hear their stories because you're right, it doesn't make us feel so alone with this. I honestly don't think a lot of people really understand how serious and scary auto-immune diseases really are.

As for his platelet count...I'm honestly not sure. I know at one point it was pretty low but I don't know what it is now. I will be asking the vet Friday about Evans Syndrome at Max's appointment though.

Bruising and bleeding: I don't know about the bruising. I don't know how I would be able to tell with the fur. However, when he bled, he BLED. Sometimes, it would just be a few drops but most of the time it was quite a bit of blood and it wouldn't stop easily. I remember shoving a handtowel in his mouth and pressing for all I was worth and it would still take awhile for it to finally slow down and stop. There would be pools of blood and spatter all over the kitchen. It was horrible to say the least. He always bled from his top gum on the right side. The vet said it looked to be happening around one tooth but he couldn't find anything visibly wrong with the tooth and we couldn't risk extracting it. Max would have bled to death. When he would try to eat, it seemed like he tried to avoid chewing on that side. I mentioned it to the vet and he said that it was probably just tender from bleeding so much. I have to be honest, as much as I like my vet, I never believed that. I believed then and I believe now that something is wrong with that tooth. My boyfriend and I have discussed having it extracted at some point...just as a precaution.

You mentioned Liz eating her litter. Max did this as well. When he very first became ill and we didn't yet know where the bleeding was coming from, we had him scoped. They said his stomach was full of litter. It would pass though. We switched his litter to Swheat litter. When he went into remission, we switched back to clumping. In November, when he became ill again, sure enough he starting eating it again. We have no intention of switching back to clumping litter again. I read somewhere online, I couldn't tell you where now as it was a long time ago, but it said that when a cat eats their litter and you do a CBC...almost always the cat is anemic. I don't know how reputable of a claim that is but it has proven true with Max.

Max started being tapered in January. He was on a HUGE dose of 20mg a day (I think the vet put him on that high of a dose just in a hail mary). He is now down to 5mg a day and I assume after his CBC on Friday it will be lowered to the dose he'll be on for the rest of his life: 5mg every other day. I'm EXTREMELY nervous. I'm always terrified when his dose is lowered. The vet mentioned switching him to cyclosprine (sp?) but its too costly to start (he'd have to be weaned down to a maintenance dose on that as well)....it would cost us $100 a month just in that one medication. That's not including the Famotidine and iron supplement that he is on. After he's down to the maintenance dose, he'll have to have a CBC every 3 months probably for the rest of his life.

My boyfriend and I are trying SO hard to be more on top of this than we were the first time it happened. I think we were in denial that it would comeback. This time, we expect it to come back. I wouldn't be surprised to walk into the kitchen right now and see blood everywhere. I'd be devastated, yes, but not surprised. Like I said, its the monster in the closet.

momofmany, I researched it a little online. Max doesn't have the horrible ulcers. He has 1 little one on the roof of his mouth but the vet said that by the looks of it, it hadn't been bleeding. His gums weren't inflamed or anything like that. They honestly couldn't find anything visible wrong with his mouth when they looked when he was sedated. My vet looked and the vet consulting with him looked as well.

The more I think about this, the more I want bone marrow testing done. The vet has talked about the possibility of removing Max's spleen in the past. We have already decided to not do the surgery if it would come to that. My boyfriend and I don't want him to go through something that invasive. But in that discussion about the surgery, the vet said that beforehand, Max would have to have a marrow biopsy done first to see if removing his spleen was even a viable solution.

I just feel like I'm not going to ever have any peace of mind (if that is even possible) unless I do know, if that even makes sense?

I sincerely thank you both again for "listening" about Max and for allowing me to bounce my thoughts and ideas off you. Just having talked with others who actually understand is really helpful.

Help! My cat is bleeding from the mouth and I  don't know what to do!!! Do you think that he could have a disease too?

Applepielover13 said:

Help! My cat is bleeding from the mouth and I  don't know what to do!!! Do you think that he could have a disease too?

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Welcome to TCS it's always better to start your own post. That way more people will see it.

We need more detail really to help
How long as he been bleeding from mouth?
How much blood?

He could have gum disease or tooth problems, or he could be injured. You or a vet really needs to see inside his mouth to tell for sure.

This is so crazy but as I was yet again researching auto-immune diseases, I came across my own post here. lol and I saw that it was just recently bumped up!

So I guess I will update on Max!

He's still alive and well. And he hasn't relapsed since I made these posts. He'll be 11 at the end of this month and seems to be feeling well. Every CBC test shows his HCT count slowly getting higher and higher. He goes again in March.

He's still on Prednisone but its a low dose of only 2.5mg every other day.

I'm still researching auto immune diseases but I'm just simply interested in learning more;  not just about IMHA but other auto-immune diseases as well. I have a group on facebook even that is dedicated to auto immune diseases in cats! lol

Anyway, that's how Max has been doing and yeah, I agree that if anyone has a pet that is bleeding from their mouth, the animal needs to be rushed right away to the vet. It could be something simple or it could be life threatening.

Thanks Guys, don't worry Captain Gantu (my cat) just had a cut lip, I think he's been in a few street fights lately so I am trying to keep him indoors a bit more; he is happy with this!!!!

Mdawn1 - what is your facebook group about this!

Another bump after 2 years! I'd love to hear some updates on Liz and Max by now. See, my cat Boots has been going through the same exact thing, and our experiences are the same.

On June 16th of this year, Boots just started pouring blood out of his mouth. It's BRIGHT red and watery. Same deal as Max, he's not coughing or vomiting, the blood just drips out of the right side of his mouth and Boots looks confused when it happens, so I feel like he's not feeling any pain. We rushed him to our vet thinking it was a mouth wound. The vet examined him and said there were no wounds in his mouth or throat. We had blood work done, x-rays, a liver enzyme check, a parasite check, a coagulant check, FIV/FeLV test, a Von Willebrand test. ALL of that came back normal, except that he became anemic after June 20th, which is expected with how much blood he lost. My original vet came to the conclusion that it was some sort of nasal polyp/fistula or something internal. But again, nothing showed up on x-rays. And internists where I live won't look at your cat unless you have $3,000 up front..

While we were running tests, Boots had two days where he was shaking and distant, and we decided to have him put down. But each time, the next day (like with Liz) he'd be much perkier! Still tired and out of it, but he was himself for the most part. We could NOT put him down after that. We tried a few shot-in-the-dark meds that didn't help. Antibiotics first, then flagyl (we thought it was a parasite native to Florida, but we just moved across country - yet another thing mentioned by Liz's owner that coincided with our story) and even a Chinese herb called Yunnan Baiyao that usually helps animals with internal bleeding. Nothing has stopped Boots from bleeding.

The thing that has ALWAYS been weirdest to me about this situation is that my sister told me (Boots was her cat previously) that this has happened before, 3 years ago when Boots had fleas. The issue cleared up on its own after a month. Knowing that this is a recurring issue and not some superficial wound, I think he definitely has what Max and Liz have. He had fleas just before we moved to Florida, but I had him treated and he currently doesn't anymore. Do you think the fleas could have triggered an autoimmune response? Then again, this fell several months after he was flea-free so I'm not sure it's flea-related even if that is the common denominator.

Tomorrow, it will have been full month since it started bleeding. He has good days and bad. Sometimes he goes 3 days without a bleed, sometimes the bleeding sessions are light, sometimes they're heavy. His HTC was 17 last time we checked, but he had a full week of no bleeding since then so I'm hoping it was higher. He was losing weight for a bit, but he put it back on and he's still definitely trying to eat litter whenever he can. He only chews with the left side of his mouth.

I can't thank you guys enough for posting this with as many details as possible. I'm trying to get in touch with my vet and ask her opinion about putting him on Prednisone. She might say it's not a good idea, I don't know. But right now, Boots is running out of time and nobody will help him where I live because nobody knows what's wrong with him. I'll try to update everyone if my vet lets me get him on pred.

Updating again: Sorry to necro an old thread once again, but this is where my information needs to be.

Mdawn1, you saved my cat's life. It was this thread I found the day before we almost put him down to end his suffering after a month of bleeding out. Kristin23 also helped a great deal. When I saw you guys went through exactly what we did with Boots, I had to try it. My vet was all too eager to do anything to help him, since we never knew what it could be. Boots is back to his old self now, 100%. He's playing with his brother again, he's energetic, and he's even heavier now than he was when this started. Getting nice and fat!

I'm thinking that Boots doesn't have AIHA or IMHA at all, since his liver cell count was great when the ordeal began. The LGPS condition that Momofmany mentioned seems a lot closer, but still far away based on his symptoms. The only reason he got anemic was due to the blood loss, and he never got jaundiced. So whatever happened to him is a mystery and it will probably always be a mystery.. but without a doubt, it was that trial-treatment of steroids saved his life. I seriously can't thank you guys or the Cat Site enough for rescuing my baby. He's my everything.

I'm not exaggerating when I say that you guys are the closest things to angels that I've ever encountered in my life. I'm not sure you guys will ever see this or know how much I appreciate you.