What a tough situation we find ourselves in during this fight for life. We are pretty much at the mercy of our vets when we start this journey. Having to put full trust in them immediately. To diagnose the condition and explain it to us and treat it appropriately. All sounds very easy, but with AIHA it is not. There is a tendency for this disease to strike fear in the hearts of those who treat it and that fear is easily past on to us. The disease certainly needs to be hit hard from the outset and what will work is not certain in any way. Cases where the attack is in the bone marrow often produce non-regenerative anemia, which is much harder to treat. Regenerative anemia usually means the disease is striking in the blood stream and other tissues such as muscle, not deep in the bone. Thanks to dark red pee and brownish color in Dylan’s gums and eyes, destruction of mature red blood cells was obvious in her.
Dog Dylan: Autoimmune Hemolytic Anemia, The First Battle to Save Her Life – Detection and Diagnosis
Dog Dylan: Autoimmune Hemolytic Anemia, The First Battle to Save Her Life – Riding the Roller Coaster
It was still imperative given the ferocity of the attack, that something quick had to work. Nothing that took 2 weeks was going to save her so there was no point giving it to her. It could only add toxic stress. It might benefit her later, but if prednisone did not work there was no later. If it did work, there was no need for the other immunosuppressant. Again I stress that conditions where Immune Mediated Hemolytic Anemia, or Autoimmune Mediated Hemolytic Anemia attack cells during synthesis in the bone marrow are considerably different than Dylan’s case. Dylan was 10 years old when attacked by this disease and long term toxic load was not something I saw as being as tolerable in an older dog.
My goal with Dylan was pretty simple. Using minimal chemical stress and minimally complicated treatment. As soon as I thought prednisone had stopped the disease, which began 4 days after starting prednisone and certainly by 2 weeks after her diagnosis with the return of her hematocrit/PCV to a value of 39, I planned to back off prednisone to the “minimum level” capable of suppressing her immune system. I never had any intention to keep her on the initial dose for very long given what I knew about the drug. I was not at all familiar with how insidious AIHA is, but I knew how insidious Crohn’s disease is. And I know how prednisone is used to treat it and at what expense.
I still knew if I was to save my old girl, long term toxic treatment would not help. Minimal chemical stress over the shortest possible term was my goal. I also knew plenty about the history of immunosuppressants and again I did not like them much either. Their effects were not so guaranteed. Prednisone was much more reliable in general. The fact that withdrawing one drug was infinitely easier than withdrawing from several, where you don’t actually know which is working, or how the body will respond due to interactions and combined toxicity.
Since we were only using prednisone, both the stop of the disease AND any return of it after as we reduced the prednisone dosage later, would be absolutely clear as to what was the cause. Stopping the disease was 100% prednisone as there was nothing else to complicate the picture, and as we lowered prednisone, if the symptoms of AIHA returned, we could know to go back up with prednisone dose until it stopped again. This would be the minimum level of prednisone and would result in the longest duration of treatment with prednisone and with minimum impact on her body. From the beginning, I knew there was risk that dropping prednisone would mean the disease came back, but this would have told us a lot as well. It would have given us a much better idea of the proper dose to use to hold Dylan at. Given what I was seeing in Dylan relative to her reaction to prednisone,I could see then how important this might be.
Little did I know at the outset how well this approach would work with Dylan and whether it was pure luck, or by design, this was the by far best decision for Dylan’s treatment. As it turns out, I began seeing serious signs of reactivity to prednisone. As I explained in the previous article, she was drinking and peeing at an incredible rate. Her aggression was serious and drive to fight for food much more powerful than one might expect and she was burning up, panting excessively much of the time. I also knew for a fact now that prednisone alone had stopped the disease. I was worried from the beginning though that the dose was too much as I began to read up on the effects of extreme high dose prednisone. Dylan began showing signs of Iatrogenic Cushing’s Disease immediately.The aggression and high water intake led us to drop the initial dose immediately from the 50 mg, 2 times per day to 40 mg.
Her red pee began to clear a day or two after she began getting stronger and within a few days it was obvious her strength was returning. Clear signs prednisone was stopping the attack.Her strength gained steadily and she was clearly regenerative, producing new Red Blood Cells immediately evident in her new strength. This improvement was continuous. Within the following week it was clear that her strength had returned and she was not overly anemic, so finally there was a reason to have hope at least. Although the first few days of her recovery were a great emotional relief, by no means was this the end. Her recovery was quite steady and remarkable for the most part.
But then almost immediately she started showing other symptoms from the use of high dose prednisone in addition to water consumption, peeing all the time, bladder accidents, food stealing and aggression. Signs like trouble controlling her hind legs and she began losing muscle from her limbs and from her head and within a week I could see obvious loss. I was immediately concerned and started talking to my vet about reducing prednisone. No one else I spoke to seemed all that concerned, but I have learned since then that this was extremely quick to see the loss I was seeing. When we did her blood test, 2 weeks after diagnosis and 10 days after her turnaround, her PCV was a whopping .39 and other levels such as Red Blood Cell counts, hemoglobin etc, were all way up to the low end of what is considered normal. At this point there was still some evidence of spherocytes. the type of cell observed as a result of AIHA destruction.
This was all good signs that prednisone had stopped the attack. The problem I faced at this point seemed to be that the prednisone was causing destruction in Dylan’s body almost as fast as the AIHA had. She was losing muscle fast and was having trouble standing. She could lift her front end, but had trouble with her hind end (loss of hind end control is different than muscle loss). It seemed obvious that the muscle loss was going to be serious soon and I became very concerned and pressured my vets to consider early reductions. I knew the consequences of dropping too soon. Everyone was warning me on VetNet and my vets too, but I felt as I do to this day, prednisone in Dylan was far higher than necessary. In a way, it was just some random dose chosen, likely higher than what had really been necessary as I had learned 1 mg/lb per day was often used in the past. Unfortunately, our society tends to think more is better and the prescribed dose now for prednisone is 2 mg/lb/day and even 3 mg in some cases. well I figured immediately that Dylan did not need the higher dose and convinced my vets to start reducing prednisone slowly each week rather than make bigger drops every second week.
I figured I would see clear signs of anemia and also cell destruction if we dropped dosage too much too quickly. Anemia was easy to see and was different than what prednisone was doing. Anemia had made it hard for Dylan to hold up her head, her gums were pale and the color took a long time to return after pressing and releasing on her gums. Even her tongue had lost color and strength. Her ears, head and her eyelids all appeared heavy when anemic. Our first real drop in her prednisone dose occurred when her PCV hit 39, 10 days after hitting rock bottom, 2 weeks after diagnosis. After 4 -6 days following the drop I was certain she was okay and I was not seeing any negative impact and by a week I was usually certain. Pretty much each week we dropped prednisone, while checking PCV every 2 weeks. Although there was a slight drop in her PCV, we did not see spherocytes and this would be a big part of decisions for further drops since they had been an obvious sign of the attack in the beginning.
I continued to have people express concern about dropping prednisone too soon, but unlike most others, Dylan’s treatment was pretty straight forward with no complicated drug interactions. After drops in dose she would stabilize and she eventually started improving. Each time after a drop I saw some change in behavior then it stabilized and I never saw anemia return. There was a lot of fear expressed by those who had been through this before, but it was a lot simpler really than most knew. They could not compare, as they had never really seen treatment with prednisone alone. And yes it is certainly possible the cause of AIHA was still present, but given how fast she was losing muscle and her ability to stand, this was something I had to see stop and if it was to stop before she was unable to do anything, then the road had to begin early. You cannot just drop them off, it is a weaning process. The first phase you are looking to make sure the disease is not present and that the change is good for them. Then once you get low enough, since adrenal gland output has been shutdown for some period of time, you have to be concerned about the adrenal glands kicking in, so it is not like other situations where you just stop taking it,
And even if the AIHA did return, it would have meant upping the dose and knowing exactly where we had to be to give Dylan the absolute best shot at recovery. This was not going to occur by overdosing her on prednisone.
This approach cannot be done in combination with any other immunosuppressant drugs though, which is the most common way of treating AIHA. Once I reached the minimum dose actually suppressing her immune system, I planned to slow my rate of reducing prednisone dose, but she just kept getting better physically despite a slow drop in her PCV to 35 over the next 4 weeks. I was never really worried that the drop in her PCV was the disease, it just seemed to parallel the symptoms of reactivity to prednisone. I dropped prednisone every week, or 10 days. I never did wait 2 weeks. Each and every drop in prednisone was followed 4 – 6 days later by improvement in Dylan. This was easy to see since she had been so devastated. Her paralysis was definitely not anemia and I was always certain of this.
Dylan continued to lose strength and after only 4 weeks of treatment, even with 4 reductions of prednisone, she could not lift her head to eat or drink water as she had lost so much muscle. For more then 4 weeks Dylan drank and ate laying on her side, unable to get on he elbows or lift her head at all. This was incredibly hard on me both emotionally and physically as she needed constant care night and day. My trip to the vet office were becoming an adventure, as Dylan was not able to get to the van on her own. I decided to use my 2 wheel dolly and strap her kennel to it. Then I hauled her around on 2 wheels, much like one would do with a wheel barrow. It worked so well she went elsewhere strapped to her dolly.
The muscle loss was obvious and occurred so quickly it concerned my vets that it might be something else. For me, it was obvious, the symptoms of Iatrogenic Cushing’s Disease appeared in order so I had no doubt and I continued to express this opinion, supported by my observations of Dylan’s symptoms. They appeared much faster than others had expressed in their cases and I alone seemed to be be concerned for her. But I remained determined and I continued to press my vets hard to continue prednisone reductions.
When she became immobile, I had to devise a way of getting her outside. Just when you think are getting the hang of taking care of them, a wrench is thrown in the works and you are reeling to learn something else. Struggling to keep up with care that is absolutely essential. I was still on my own with a dog consuming immense amounts of water and needing to pee regularly, but not being able to move on her own. On top of that, Dylan is not one to like being helped. She always was independent, wild even early in her life. I had tried to use a towel as a sling idea suggested by my friend Renee, but It was hard to hold her stable.While walking she was like a drunk and needed my constant stabilizing and then she needed to lower her rear end too, which was not possible with a towel on its own.
At some point I tried using her harness on the front end to have something more stable to hold her with, along with the towel I would put under her body and then wrapped it around her and tucked it into her harness. This way I had a handle on the front (Harness and towel) and a handle on the back (rolled towel) and I could carry her, or help her walk as needed. At some point she could not help walk at all and she did not have the strength to pull her legs forward and place her pads on the ground. At this point I would have to lift her to her destination I would have to help her get her pads forward so she was not standing on the tops of her feat. For about 2 months I dragged her kennel out to the back patio or yard, rain or shine and lifted her outside for a pee every 4 hours or so. She was drinking a lot and needed to pee a lot and did not have great bladder control due to muscle loss so this is what had to be done if I did not want to be cleaning the bed all the time. She also had developed a bed sore from immobility, so I had to be better at rotating her. Every 2 – 4 hours I had to roll her over, which she did not appreciate at all. No sleep for me for 2 months.
Once we got down to 30 mg per day, I started to feel like she was not getting worse and that maybe she would get better soon. At this point it was now hard to see changes, but I could still tell clearly she was alert and not anemic. We were not doing weekly or even biweekly blood tests, because it was still obvious to me that I was not seeing the tiredness of anemia. I started to see more motion in her head, but wouldn’t let myself believe she had turned a corner until I was more certain. She still loved to eat and was eating a lot thanks to the prednisone, but there was no way to feed her enough to keep her from burning her muscle. The effort she put into eating was not like I observed during her anemia. So much prednisone in them stimulates metabolic activity and since Dylan was more sensitive than most, she was burning even faster.It was consuming her bod in front of my eyes, but maybe, just maybe, it would stop soon.
At 20 mg per day I started to see certain signs that Dylan was improving. It started with very little things like lifting her head more and moving around in her kennel, then turning in her kennel so her head was at the back, then trying to turn over on her own once she could get on her elbows. I had been turning her every 4 hours maximum since early April, so now she could lift her front end a bit and fall onto the other side, but it also was dangerous as she could not move her hind legs and would get caught. I had to be very alert to her attempts to toll over and feared she could break a leg, or pull a ligament. I certainly wanted to avoid such an injury at a ll cost so I stayed alert for her to move. Initially I had either been sleeping on an air mattress in the kitchen with her when things were more critical, but had moved to my living room couch where I could still here her drink and stir during the night. I was having to use a little bowl for water placed right at her kennel and having to stay alert to keep it full in addition to getting her up for pees and rolling her over regularly. It was a huge amount of constant work while she could not stand up and go outside.
As we continued our weekly prednisone reductions, Dylan began to be able to roll over in her kennel on her own. She could now lift her body all the way to a sit position then roll back down to the other side. She was better at this from one side since her body was not able to turn left as well as before her anemia. So she could not roll and push as well to sit up when lying on her right side. She would eat mostly up on her elbows, which had been impossible for over a month. Almost 2 months after getting sick and 6 weeks after being unable to stand and walk on her own, she started sitting up to eat dinner. I started by holding her bowl for her while she sat up to eat and then brought our a stand for her bowl that I had stashed away. Once she started sitting up I figured maybe a couple of more weeks and she would be standing.
That weekend I took her to the 2011 BC/Yukon AAC Regional Dog Agility Championship in Abbotsford where I was volunteering as the head scorekeeper. I had a nice isolated spot for her indoors and I could keep other dogs and people away from her as necessary since her immune system was not necessarily operational at that point. She had many friends there, but I had to be careful how people interacted with her. Mostly I protected her face, but many people petted her. I took her for trips in her 2 wheel “Furrari” kennel and on our electric carts we used to travel about the site. She made a few people cry tears of joy seeing her out enjoying herself even though unassisted walking was still not possible. I took her out for a pee once (harness and towel assisted) and she would not go back to the score room. She insisted taking me in the rain down to the tent city where her friends were. She wanted to walk.
What a great May long weekend it was. Truly a high point as Dylan was recovering and had been out to see her friends for he first time since getting sick in March. On the Monday after returning home from the event cleanup I was preparing dinner and had set Dylan’s water bowl in her stand, preparing to give her dinner. While preparing her meal, I turned to look at her and was completely awestruck as I saw her standing there waiting for dinner. Standing on he own for he first time in almost 2 months.I knew this wold be an emotional moment for me and I was not really prepared for it so soon. I was in tears as I prepared dinner for my dogs. which took much longer than usual. A truly happy moment in her journey.
I tell many people who focus on what their dog’s have lost that one day they will be happy for everything their dog’s have. After seeing what they can lose and how difficult the fight can be, even the little things matter. Seeing her roll over in her kennel, sit up to eat and then stand on her own were all amazing things to see and brought great happiness after months of pain and anguish. Her recovery continued with many other great moments as we started skipping doses of prednisone, no longer reducing each dose. This would keep higher bursts and allow the adrenal glands to do a little work in between. Dylan continued to gain coordination and strength and was able to go for pees on her own, negotiating some rough terrain to do so. Still I had to stay close and make sure none of my other dogs made contact with her. I could not afford to have an accident where she fell or where my other dogs banged into her and knocked her over. She didn’t have enough muscle to protect herself and injury was highly possible.
There is no doubt how tough it is to see your dog be so week and lose so much, but watching it recover everything it has lost can be incredibly uplifting. So many little things we take for granted and in fact seem like chores no longer hold that negative stigma. Bowel movements create work for us on most occasions, but in my life, they are a sign of life. This is one of the hardest things they will ever have to do when sick. something so insignificant, most people would never give it a second thought, but I know that if Dylan can manage a poop without fainting, she is alive! Anything less and she is fighting for life. A defining movement!
As she regained her coordination and strength, I had to make sure she had challenges to her strength and yet to also make sure she didn’t get carried away. This is a delicate balance, but as the excitement, energy and strength return, they are not always in balance. Barking and happiness to be up and about exceed ability. Strength to support her limbs in particular is not what it needed to be. I needed to let these return slowly and to provide her challenges enough so that she was able to actually gain strength again in particular, since she had lost all muscle.
Even though she was only ever taking prednisone, she still had to deal with so many issues as a result. As she came off prednisone in the last few weeks, she started developing bumps on her skin and her skin along her spine became raw, with obvious sores. She shed clumps of fur instead of the usual shedding. These areas appeared to be healing as she finished prednisone and following for a few weeks so I chose to watch them and make sure they went away, or I would have had to do something about them. Fortunately everything cleared up, even her shedding clumps of fur. Her fur is not quite the same, especially down he spine, but elsewhere, like around her head and her neck is still very nice. I knew all along she could lose her fur and since she had such beautiful fur I certainly wanted dearly so save it for her. That and losing bone, another potential effect of high dose prednisone, would have been hard for us.
Finally off prednisone, Dylan continually gained strength and coordination. Effects in her skin slowly began to clear. Her appetite, energy and strength remained strong and in fact she has continually gained strength. Shortly after she was off prednisone, her blood work came back normal to support what I was seeing and her hematocrit/PCV had risen to .42 supporting the thought that prednisone was inhibiting recovery and causing the drops we had seen earlier. I was so happy, despite any fears people had about the possibility of a relapse/another attack. This is possible for sure, but keeping her on prednisone to prevent it is not a good plan. Getting her strong again; letting her liver, kidneys and other organs recover and exercising her so her strength returns and gives her the energy to fight again if necessary. That is our plan. Life on prednisone is not how I want my old girl that I love so much, to spend her days.
Rebuilding muscle is a primary goal, as she needs enough to have a happy and healthy life. It will also be necessary to protect her from a future attack once again. Daily walks, starting off short and increasing distance. Then rather than always increase distance, I work to increase effort, faster walks are better. I often bring Jimmi to walk with Dylan, which is a great pairing for keeping Dylan moving. Dylan is so excited she pretty much trots or runs much of her walks at some point. I give her bones for her jaw exercises. She takes a lot longer to eat bones than any of my other dogs due to the loss of huge amounts of muscle in her cheeks and head. But working them helps make them stronger for the future. She will never gain back everything she lost. That process would require serious effort and I would think constant swimming om a rehab pool would be best. I don’t think Dylan is going to get that opportunity, but it is not a necessity for her future health and happiness. She is not an athlete like my other dogs and in fact is more of a couch potato. I am so grateful for her strength and ability to get on and off t he couch!
I often wonder if this minimalist, prednisone only approach is possible in other dogs? I have not seen it in other dogs since Dylan got sick really. I would sure like to know, but so far I think only a small percentage of acute cases could be treated this way. Where the attack is clearly on red blood cells maybe and the dogs respond to prednisone. I have not seen a dog yet who reacted to prednisone like Dylan though either. Was this just a luck that I chose only prednisone AND she was very sensitive to its effect so her immune system shut down quickly? Too much prednisone was bad for her, but what would her treatment have been like had she been on multiple substances and then became paralyzed? What would we have attributed the cause to then?
One thing I am certain of is the minimalist approach was much better for Dylan than any other. If she had reacted to prednisone like she did and was on other strong drugs too, I am not sure she would have recovered initially like she did and I don’t know that we would have saved her. This is the big question I keep relatively to myself. I often wonder if the immunosuppressants suppress recovery more or less in all dogs and whether they turn every case, even the acute ones, into a chronic and toxic situation to some degree, which is much harder to resolve. Who am I to question though? Nobody! Maybe I am just someone who was lucky with their dog. But I don’t think Dylan is that unique, or some form of anomaly either. Her case is textbook idiopathic AIHA. It is not many of the other forms of IMHA which are not so easily treated, relatively speaking of course, and not that Dylan’s treatment was a breeze either!
Another fact I am also certain of is that we need to respect the individual nature of how the chemicals we use for treatment in these cases interact uniquely with each dog. More is not always better. Each dog has a unique interaction with each substance we use for treatment and we need to know more so we can be better for each individual dog. Some dogs don’t react well to prednisone, some don’t react well to immunosuppressants or antibiotics. Some tolerate huge amounts while others become sick and suppressed immediately. Allergies and sensitivities are always possible and chemical stress is a fact and unavoidable. We need to keep our eyes open and treat the chemicals we use for treatment high on our list as causes for the troubles our dog’s face. I believe we achieve better balance when we consider everything we use as having both positive and negative consequences and always consider both.
Dog Dylan: Autoimmune Hemolytic Anemia, The First Battle to Save Her Life – Detection and Diagnosis
Dog Dylan: Autoimmune Hemolytic Anemia, The First Battle to Save Her Life – Riding the Roller Coaster