Canine Autoimmune Hemolytic Anemia (AIHA & IMHA) - Vets need more info- a rant

Well, we just returned from a quick PCV test. Tiggs wasn't eating, and I got worried. PCV was good, 41, and the vet suspects that he's probably trying to shed the 16 lbs he has put on since dx now that his dose is only 5 mg Pred and 30 mg Aza/day. My normal vet was off today, so I saw a different one I'd never met. What floored me was his lack of optimism with regard to IMHA. He said in all of his years of practice, he's only had two dogs survive IMHA, and none whose PCV was as low as Tiggs was at dx (10). That part wasn't as shocking as him telling me that they are taught in vet school that a PCV that is as low as 10 is 'incompatible with life' HUH??? He said that many times they don't use optimism with owners because they don't want to give people false hope. What??? Plus, the statistics are all over the board. He said 90% don't make it...BS!!! I've seen stats anywhere from 20%-90% mortality. Well, which is it?? Why can no vet tell you the prevalence of IMHA...isn't anyone studying this?? Yes, we've lost a lot of furbabies, but there are many left who are taking it one day at a time. I'm really glad he wasn't our vet when Tiggy was diagnosed. Vets and vet schools need to rethink IMHA, so they can treat it swiftly and aggressively, and they need to visit this forum and Joanne's site to realize that dogs CAN and DO survive, to use Joanne's mantra!! They need not resign themselves to the fact that IMHA can be fatal. They need to champion for their IMHA patients, and help families connect. None of the vets I've spoken with have heard of this forum...how can we educate them that we are here, we are determined, we are fighting for our dogs and we want them to do the same? We need them to be hopeful so we can be hopeful!! And so that all of the ones we've lost aren't in vain! If IMHA is on the rise, how can we help these docs get with the program on the latest and greatest treatments, connecting patients together for hope and support, rethinking the old 'death sentence' paradigm?? Is this something the Morris Foundation can help with? Or do we need to fill an RV with everyone on this board and go tour the vet schools and change their way of thinking and treating AIHA/IMHA??? Sorry, just got really fired up thinking about his words. Thanks for reading. melissa and tiggs

melissa slc

I hear you, Melissa. At first, my vet acted almost as if she wanted to send me to an emergency clinic. I don't think she wanted to deal with Toby's case herself. I took my other dog to the clinic to provide a blood transfusion. Then, I had a hard time convincing her that initially, the steroid dose needed to be much higher than what she was prescribing. Eventually she checked with a vet at a nearby university who confirmed the higher dose. At the end, she wanted to perform a splenectomy even though I told her that Dr. Dodds had advised against it. She wanted to use Oxyglobin in the event that Toby would have needed another transfusion even though I told her that Dr. Dodds advised against that, too. I'm not sure that Toby would have made it as long as he did if I hadn't found this forum. Vets definitely need more information. Karen H.

Karen H. MO

I'm with YOu all the way Melissa !!! The shock of loosing my dog is wearing off and now my "why why why" is kicking in. My mini schnauzer 8yrs old was super dog one day and then a month later, I laid a small wooden box draped with blankets, balls, and his duckie in the ground. How could this be? What I've found so far, is simple; currently there is not much AIHA research going on. EVen the American Vet Medical Assoc's web site doesn't implicate much. Several Vets I saw, were not very optimistic from the get go. They wanted to refer me to Specialist and then said, most don't make it. This is not what we want to hear but I do want to hear the truth and if that's the truth I'm ok with it. I know I did everything available to me for my boy. But I still I'm not satisfyed with my findings today on current research being done. I want more answers.

Karen R GA

I agree with you, Melissa. Why isn't there any data on the survival rate of this disease? I think my vet was pretty good, but she even admitted that she was just, "shooting from the hip". I know she tried her best. She cried with us when we had to let Sunny go. Every time I took Sunny to the vet, if she wasn't there, the other vets in the practice didn't really know what to do. I believe that the reason the vets want to send us to specialists is because there is no exact treatment that works with every dog to make the disease better. The only way this situation is going to get better is through research, so that the vets can have a protocol that works. Money. Money is the answer. They need money to do research. I've toyed with the idea of contacting Oprah about this. She is a huge dog lover and a huge fundraiser. Leslie

Leslie Oceanside

Okay, here are the top 10 vet schools in the US- maybe we can rally them to connect with us here and improve the odds for our pups: 1.Cornell University's College of Veterinary Medicine 2.Colorado State University 3.University of California-Davis 4.The University of Pennsylvania's four schools tied for the No. 5 position – North Carolina State University, The Ohio State University, Texas A&M University-College Station and the University of Wisconsin-Madison. Rounding out the list were Michigan State University at No. 9 and the University of Minnesota at No. 10. We had a wonderful experience with CSU early on, and my vet was incredible at consulting with them through our initial crisis. I also want to stress that most vets, mine included, are incredible and manage to do amazing things with treatment. It's just still frustrating that there are many other docs as puzzled as we are that just seem to give up before things really get started. I hope my 'rant' wasn't slamming our poor vets too bad, they truly are heroic in their efforts against this disease. But, it seems there are a few still out there with an outdated paradigm. Sadly, money is the key for the research, and since they don't really know the prevalence, it's probably hard to get money thrown at it. If someone knew that IMHA affected "1 in 10 dogs", or whatever that number is, it makes it easier to quantify the money for more research. Allright, enough out of me today...those words earlier just really got under my skin I guess. melissa and tiggs

melissa slc

Wow THAT is exactly what the ER vet told me about a low pcv not being compatible with life...her EXACT words!! I feel lucky to have waited and taken her to my vet who seems to be doing all he can. ANd giving me the hope you talked about. Hope Tiggs gets his appetite back. :) Amy

amy txgoldenhorse@yahoo.com

I agree with all on this one. The vets surely do not know about this disease. My vet flat out told us when Holly was first sick 2 years ago that he was not equipped to handle this, nor did he want do and told us to go to a hospital. So we did this with the help of our boss taking Holly down to a Atlanta hospital. Once she came home a week later, our vet would not make a move without the advice of the internist from Atlanta and on and on it went. Then about 2 months ago a new vet started assisting our vet, said he knew about IMHA and when her blood work came back good, his answer was, no we are not going to decrease any meds her blood work looks good, lets just keep everything the same. It was at that point I contacted Dr Dodds and am happy to say we are now in the process of weaning her off of the drugs. Rather then admit they don't know about the disease, just keep us coming back for more blood work and drugs. In 20 months we have spent over $10,000 with Holly, not that she is not worth every penny. But I guess this could be the case with humans also. In the last 5 years my husband and I have we have lost all 4 of our parents all to cancer. 3 of the 4 it happened within 2 month time frame. Linda

Linda Sapphire

I agree most vets are so negative. When I took Scruffy to the vet after realising he was drastically sick. I was told this. How far do you want to go with this it could cost you $2000 upwards just for starters. I had no idea what what wrong. She didn't even want to explain the condition. She just wanted to put him down. He got his blood transfusion after I insisted at another vet hospital.

Julie Australia

Veterinary Research studies are very costly and there is no government funding for them. They are sponsored by people like you and me who donate money to sponsor these studies In the last 6+ years the Meisha’s Hope AIHA/IMHA Fund #338 at Morris Animal Foundation http://www.morrisanimalfoundation.org/special-campaigns/meishas-hope/ has sponsored or cosponsored AIHA/IMHA studies at Colorado State University, the University of MN, as well as at a couple of other leading veterinary schools. This year the MH Fund is co sponsoring a very promising study at Cornell. In addition the Meisha’s Hope Fund is working at sponsoring Veterinary Student Scholarships in AIHA/IMHA to get vet students interested in the disease in hopes that they will go into research rather then private practice. The number of vets going into research is on the decline. Researchers study diseases that have money available for grants to study those diseases. So if you are truly interested in having more research done on AIHA/IMHA you have the power to make that happen by helping to make the money available for those studies by donating to the Meisha’s Hope AIHA/IMHA Fund #338 at Morris Animal Foundation: http://www.morrisanimalfoundation.org/special-campaigns/meishas-hope/ It is the only fund that sponsors AIHA/IMHA Studies and AIHA/IMHA Studies only. I am truly convinced, we will find answers to the many questions that surround AIHA/IMHA but to do so we need the help of each and every person whose life has been affected by the disease. You can use this donation form to send in your donation by mail http://www.cloudnet.com/~jdickson/donationform.htm or you can donate online at the MAF Web site https://www.morrisanimalfoundation.org/donate when you donate online be sure to check the Meisha's Hope box on the donation form.

Joanne MN

It may be some time before anyone decides if there is an actual "cause" for AIHA, and as Joanne says, the research is very expensive so it could be years before anything helpful evolves. While we are waiting for an answer, we all might be able to help other dogs and owners get proper treatment in a timely manner by getting Jean's advice and protocols for treating it to the 75,000 vets in the United States and as many as we can in other countries. Mail is a possibility, but e-mails and the internet cost nothing but a little time. It would require consolidating the web addresses of vets in the U.S. in "your area" and centralizing them. I would be glad to attempt this in the San Francisco Bay Area. In the old days, people used "phone trees" to disseminate information quickley. We might be able to do the same. Even if we miss some areas initially, the information will eventually spread, and we will acquire owners on this forum from areas we may have missed. It could be something on Cloudnet's webpage vets could access, or something we actively send....just a thought. I know we are all frustrated by not knowing the "cause", but maybe we can help by starting with the "proper treatment". It could become a way for vets to report their cases so we get a better picture of the number of dogs that are actually getting sick.

Ron B San Mateo

I think the major obstacle is reaching Vets that are open to the idea that this is a treatable disease not an automatic death sentence. My Vet recognized it immeaditely, the first ER hospital Vets I wasn't totally happy with but they got my dog home. When she relapsed I took her to a different ER and the Vet there was excellent and even though they treated numerous cases of AIHA a year she was open to any input and suggestions I had and cried with us when we had to let our dog go. I have had to change my regular Vet after he referred to Dr. Dodds as a quack. You have to understand that there is a lot of politics involved and some very closed minds. Then you can add in the millions of dollars being made on the drugs and pet products. On the other hand I love a challenge and hopefully if we all are vocal enough we can make changes. Penny

Penny Lytle Creek Calif

I lost Stormie to this and my vet's office thought I was simply *neurotic* when I called in a panic because I KNEW Stormie was in trouble...my gut knew it, I could see it in her eyes, she was breathing too fast, she wouldn't eat, she didn't get up...they passed me off. So I went somewhere else where she was dx'd the next day. The 2 vet places traded info back and forth b/c I went back to my orginal vet of 25 years 2 days later where Stormie then went to the Bridge (her pcv was 8 and she was completely white and jaundiced and had thrown a clot). As a result of this, my vet of 25 years dumped me as a client. I think I made too much NOISE about vaccines and things like that. Trouble is, I really trusted him, miss him....it has been 6 years and I still have not found a vet I like or trust like I did him. Sometimes vets get very defensive when a client calls them on something....it really backfired in my case. It's sad, so sad. They gave me very little hope...sometimes I wonder if I fought hard enough............. :( I miss Stormie. Mrs. Gates I will NEVER hesitate to call a vet on ANYTHING again!

Mrs. Gates Michigan

In fairness to my vet, we live in a small town. She has a small practice and does not keep universal donor blood on hand. She recently ordered Oxyglobin to have available. I'm sure she was doing the best she could. However, she also told me that she had to stay on her toes because she felt I knew nearly as much about this illness as she did. Karen H.

Karen H. MO

Melissa, I know exactly what you are saying. Our 2 yr. old Golden Cooper was diagnosed on Tuesday, Oct. 23rd. By Friday, Oct. 26th he was in the hospital with a PCV of 13 and a blood transfusion on that day. His PCV was still at 13 on Saturday when another vet Dr. Winkler came on, he put Cooper on 50mg. of azathioprine( we feel this med saved his life) along with the 80 mg. of prednisone he was already on. After being discharged from the hospital on Sunday Oct. 28th we made an appt. with our usual vet on Monday. She kept Coop on the prednisone as it was and the azathioprine also. She decided to add amoxycillin since he had come up borderline Lyme disease. Anyways, after about 4 weeks of the same meds, and the amoxycillin which is not the drug of choice for Lyme and countless blood tests and money, we decided it was time to switch vets since she had no idea how to treat this disease and had never had any animals that had it, nor did she try to educate herself on it. As of today, Cooper has finished his last dose of prednisone, we will begin weaning him off the azathioprine I guess tomorrow after he has another blood test. His numbers continue to climb and the new vet has had experience with this disease and has already had two dogs that recovered from it. So my advice to anyone whose pet is diagnosed with this disease is to immediately find a vet that has experience in treating it. There is definintely hope for these animals.

Kathi New Jersey

Melissa: I hear you! There are so many factors that come into play. Your vet's experience, location, clinic size, age, politics, attitude, "bed side manner", continuing education, etc. We are very fortunate to have a wonderful vet who listens to us, doesn't bat an eye when I get worried, paranoid or upset and is not afraid to question himself, us or Iowa State's VTH staff. Or to reach out to other specialists he knows when something weird turns up. While Sheba was at ISU (6 days in ICU) I called our local vet almost every day with questions about what ISU's staff were telling us. If our vet wasn't available when I called he always called back as soon as he was free. He was patient, understanding and as positive but realistic as he could be. He took the time to thoroughly explain everything and made sure we understood what was being done and why. The first resident we dealt with at ISU was very helpful, willing to answer all our questions and also willing to seek a second opinion when we questioned something. Wherever she winds up I have no doubt she will make a wonderful, caring, open vet. Unfortunately, the second resident we got was not as informed. Part of this may be because we never actually saw him - we only dealt with him by phone. When Sheba was down to 125mg of Atopica once daily we sent her test results off to ISU for their review and recommendation as to how far we could reduce her dosage. (Her PCV was around 46 at the time.) The second resident called back and left a message with the instructions to just stop it entirely. I freaked and immediately called back to verify that this was really what they wanted us to do. When I spoke to him he said that dogs should really be weaned off their meds about 6 months after diagnosis and so, since it had been 6 months, we could stop her medications! Wow! When I called our vet and told him what the resident had said he was shocked, too. We decided to ignore them and reduce it gradually. His comment was that it was obvious the resident hadn't treated many cases of IMHA yet. I really wish now that I had called ISU back and asked to talk to whomever was supervising his residency to express my dismay at his recommendation. I keep hoping that he will learn a little more between now and when he goes out into the real world and is faced with an owner struggling to get their beloved pet well. So I guess based on my experiences, I know we have a long way to go with some vets but am hopeful we will eventually get more vets educated about this disease and it's treatment. I know I will continue to tell everyone I know with a dog about the disease and what to look for. And when we get a little extra we will donate to the Meisha’s Hope AIHA/IMHA Fund #338 at the Morris Animal Foundation. Rita, Mike and Sheba

Rita IA

This is an awful disease, period. And contrary to anything this disease kills..a lot and most of the time. Most "day" vets might see 1 maybe 2 cases if they are lucky (not to imply this is a good thing). There may be a lot of us here, but there are not a ton of cases out there, so a majority of vets don't recognize it or even see it. I can certainly understand everyone's frustration, but I do think it is important to remember that it's easy to judge in hindsight. I know there are terrible vets out there, I really do. My vet did call it with Lola at first sight and we did all we could (and I mean everything) and we still lost Lola. Even with the best of everything you can still lose a patient..no matter what. Trust me, working in this field I see yahoos everyday that never want to learn anything new and choose to hang on to their old school ways. But..most vets do want to do the right thing. No one wants to lose a patient, trust me. Sorry and I hope I dont get crucified, but I felt I had to post.

Courtney SLO

Dr. Dodds was in my area this summer for a day-long workshop that I attended. As we all listened to her speak it became clear to me and others that there is a health care crisis for dogs in the United States. During a break I had a private conversation with her. I told her how motivated I was to do something and asked her how to go about the politics of changing the situation. She told me that I need to do this one dog at a time. There is no magic bullet that will remedy this situation. I also think it is important that we try to recognize that the veterinarians that we see everyday got into that field because they love animals. There is significant schooling required and it is for all types of animals, not just dogs. So with all that they must learn, specialties like hematology, oncology, orthopedics etc are something that they would not receive extensive training in. In addition, these vets are exposed daily to owners who say "how much does this cost?" And in many cases, owners will indicate they don't want to spend any money to treat their dog, or at least they want the cheapest way to do it. Vets have to come up with creative ways to treat seriously ill animals on a "budget." To this day I still see people writing into the canine nutrition forum I am on asking what is the cheapest way they can feed their dog. The philosophy of many American dog owners is to have a dog, but spend as little money as possible to keep it. Vet are up against a difficult mindset. So I think it is understandable that any one of us will be exposed to a vet that has years of experience under their belt, but who is worn out from hearing, "save me money." When they do talk to an owner who says "save my dog at whatever cost" this could be something they don't know how to handle. They don't have time to stay up with the latest treatments, any more than many human doctors do. I know it's easy to blame these vets that you are having trouble with. Please try to keep in mind the things I have talked about. Approaching them with a pleasant manner and thanking them for their dedication to treating animals will achieve more than blaming them. I do want to see change. I would like to see every clinic in the US have an emergency AIHA kit. I would like to see every owner of a clinic be exposed to a "911" workshop for treatment of this disease. But for that to happen, there has to be involvement from the industry. And that requires years of work. For right now, as Jean says, it has to be done ONE DOG at a time. my best patrice

Patrice NYS

I thank you Patrice for your huge expertise and help. I never understood the disease and it was only after I lost my dog but kept reading this forum that I really only ever understood how it all happened and why it is so hard to treat. I only understood through you and others what happened and why as I had a lot of trouble coping with it. The vets I dealt with didn't help me. My vet did tell me she consulted a vets net forum in Australia which vets only can access and that she asked for treatment advice from this forum when I first took him to her. Later on I was told Scruffy had no chance of recovery as a pathology report showed no regeneration of any new red blood cells. On this report it stated that most cases of IMHA are regenerative which I know know is not not correct. I think the idea of an emercency IMHA kit a great idea that every vet clinic should have.

Julie Australia

Melissa makes me wistful that I did not follow my heart and go into vet school! That is what is so great about this site. Everyone on here has been such a blessing for me and helped me to ask the right questions to my vet and be my doggies advocate. Patrice it strikes my heart knowing you are right so many people have dogs that not only do they not want to provide adequately for their physical well being but they do not provide for their emotional well-being. I think Ghandi said..."The greatness of a nation and its moral progress can be judged by the way its animals are treated”. Amy

amy txgoldenhorse@yahoo.com

Linda in NC...like you I have spent $10,000 over a two year period helping my beloved Choe recover. I have a teaching VET hospital only twenty minutes away otherwise he would not be alive regarding the AIHA diagnosis,(four) transfusions and follow up hospital stays/additional surgery required for a nasal fugal infection and a bout with pancreatitis. The every three week pcv tests continue. In my 'dream' world I would like to see teaching hospitals as well as practicing vets review their charges. The $$ 'mark-up' for treatment protocol is over-the-top in many instances. Would like to see our new Obama Administration work on a healthcare system not only for children and the unemployed but for our animal companions. Where does the 'average' person secure the thousands required to treat this condition we have all come to know as depleting our savings faster than rain water going down he drain. I have found many vets to be rather cavalier reflecting their charges and making certain every (clinical) task is noted as an add on (i.e waste disposal/vet tech fee..which I never could figure what that was..except the vet tech carrying the dog back for the test). So, I feel disheartened when examining the 'industry' standards (often rather than the individual vet...I have interacted with several who really are quite concerned of the on-going status of one's pet)) as currently stands. Many of them do not set the standards. However,collecting monies and fees has many times transcended the reality of how the 'middle class' can cope via the provision of medical care required for our companion animals. Sadly, I'm not sure it will change in our lifetime.

Jan PA

I've been meaning to respond to this but I've been traveling (in your neck of the woods now Melissia and Tiggs, just drove from Rochester!) Part of me agrees with you about vets sounding so negative. That isnt good for your dog or the caregiver to feel that way. On the other hand, when Ollie was diagnosed, for me it was more complicated because my friend/roomate was his vet, and she didnt know about other treatment than pred and cytotox (NOT cyclosporine!), and not the recommended Azth.(sp?) 5 days after Ollie was diagnosed I looked up on the internet IMHA and found that it wasn't 100% curable and broke down crying. I dont think she wanted to tell me for fear of upsetting me, she told me not to believe everything I read there (it wasn't this website, dont remember where I was) The first thing I read about was blood clotting being the leading cause of death, and that is what Ollie died from. We visited a specialist 3 times, and the second time he noticed fluid gain (the name begins with an "a", I cant remember the full technical name) The last time he visited the specialst he had already thrown a clot and I was bringing him home on oxygen to be able to put him down at home. The specialist came in and while sympathetic, said he probably was throwing clots all along and that was why he gained fluid. I felt like screaming through my tears 'why didnt we use asprin then if this was the alternative???" I feel he did give up on my dog, and I dont believe he was a bad vet, he seems knowledgable and respected for all other matters except IMHA. Towards the end, 2 days before Ollie threw the clot I found this website, and began to feel desperate. I had been asking my local freind vet about the alternative treatment, trying to convince her to try other options, even though it wasnt their usual protocol. She was willing to do whatever I wanted after I had told her some things, contacted a friend of a friend at Cornell (a vet that has been doing reasearch on IMHA) and she said "no, we dont use cytotox, but Azath." When I had been thinking about admitting Ollie to Cornell she said not to worry that my specialist was great, she had trained him. Why did he prescribe cytotox then??? Furthermore, she was a leading person on the asprin study, so why didnt he prescribe him asprin if there was a slightly higher chance of him getting better?? Where is the communication? Meanwhile its eating away at me mentally (I'm trying not to let it)and I have to live daily with the empty hole in my life that is my missing buddy and constant companion. I wish I could say its getting better but its not. This disease is horrible.

mj Ny

This thread was discussed between 11/12/2008 and 16/12/2008

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