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Hi dear Ashley
What a worrying time for you -I’m really sorry to see what has happened to your darling Lola. It’s heartbreaking when you think they are improving & I feel for you – it’s rotten luck.
It sounds to me from reading about what has happened that Lola has Evans Syndrome, which affects the platelets as well as the red blood cells (thrombocytopenia & anaemia). We have people on here who’s dogs have conquered this, so don’t be despondent, please. I am so very sorry she has relapsed – again, this has happened to other owners. You really have to start again with the high dose prednisone & immuno-suppressants, but do not reduce the doses – be far more cautious with getting her absolutely stable before considering starting any reductions.
Brigitte mentioned that this disease is very rare & many vets have not seen it before. I don’t know if this is the case, but I would also advise you to see a Specialist in Internal Medicine (if you don’t have one already) or preferably contact the wonderful specialist called Dr Dodds that Brigitte mentioned who has helped many of us on here – you can contact her for an appointment (via the internet is fine) through her website. I consider her to be the most knowledgeable & lovely person & she really helped me over here in France – thank goodness for the internet say I!!!
http://www.hemopet.org/contact-hemopet.html
I have not heard of melatonin being given before & am questioning it’s use – I am hoping someone else on here knows more about it than I do & can help you on that. My dog Worzel was also on azathioprine, however it is more usual to see cyclosporine given. This is an option which I would discuss with your vet as it may prove more effective if the azathioprine isn’t working.
There is a lovely lady called Samantha on here from time to time – her dog also had Evans Syndrome (in remission now). I’m sure she would reassure you that with the right drug treatment, Lola can beat this disease.
And to back up Brigitte even more, the tummy protection is essential – these drugs are very hard on the stomach. Sucralfate & famotidine (Pepcid) can be given by your vet – must be given separately (preferably 2 hours before or after) from any other drugs as they stop proper & full absorption.
Well, checking the dosages needed for Lola:
“Prednisone doseage for AIHA/IMHA is normally 1mg per pound (2mg per kilo) per day & should be divided into in 2 equal doses, given 12 hours apart.” Say she is about 37lbs, that would be 35 or 40mg per day divided into 2 x 17.5mg or 20mg doses.
“Azathioprine dose is usually 1 mg/lb/day for 7-10 days ,then taper down over several weeks. In the long term, Azathioprine may only be required every other day or even less often.” So for Lola, starting dose 35mg or 40mg per day.
Hope this helps!
Ashley, please know I am thinking of you – this is not a pleasant experience to go through. We are all here to help – there are lovely people on here with experience of this disease right beside you every step of the way.
All our best wishes
Sheena, Worzel (diagnosed with rare form of IMHA Dec 2012) & Ollie too
Hi Ashley
What a gorgeous girl Lola is. I love your family photo. I’m so sorry to read all that you have been through, from the difficult diagnosis to Lola suffering a relapse. Brigitte and Sheena have already given you excellent advice, and as has been said, I’d highly recommend consulting an internal medicine specialist and Dr Dodds at Hemopet.
I’m interested to hear about the melatonin, which I’ve never heard of being used with animals. It is sometimes used with humans for sleep problems – I think it’s a natural substance, a neurotransmitter perhaps. Don’t quote me on that though!
Has your vet discussed trying cyclosporine (Atopica) with Lola at all?
Hang in there. This is a horrible time for you all but there are some wonderful success stories and it sounds like Lola is a little fighter.
Love, Mary and Mable x
Hi Ashley, I’m glad you’re here.
I too am a bit concerned at the dosage Lola is getting. Perhaps she started on the higher dose when first diagnosed? Bingo was 8kg when diagnosed and put on 10mg prednisone twice a day, so Lola’s current dosage seems low to me. Bingo also relapsed when reducing and we had to go back up to 15mg daily, not all the way back up to 20 (although he had lost some weight by that time).
I understand the sensitivity to prednisone, but these are actually very common side effects. We all hate the drug, but have great respect for it – it’s a life saver. When the dosage is reduced, the side effects all start to ease and go away.
Whilst I think the 14 day tapering is a normal reduction schedule for prednisione (with other ailments), it’s generally not a good idea with AIHA. I certainly discovered this the hard way.
When does she get checked again?
Love Vally & Bingo
Hi Ashley. Lola is precious. My dog, Sadie, was about the size of your Lola, 32 lbs at onset of AIHA (her story is on the forum – I won’t rehash it) in 2012. She now weighs 39 lbs, from the prednisone – weight gain is just one of the unpleasant side effect. BUT, it saves their lives – they can loose it later. :)
I too, am concerned about the dose of prednisone that Lola is on now, that perhaps it is not enough. Sadie, about the same weight as I said, was immediately put on 40MG of prednisone daily (20MG in the AM and 20MG in the PM) and one week later – after not producing reticulocytes – her vet added 50MG of Atopica (cyclosporine) daily (25MG in the AM and 25MG in the PM). My vet also added PetTinic (Amazon), an iron/vitamin supplement – from day one. I swear by it.
She too, had all the side effects you describe with Lola and I was shook up about it, in tears, in fact. But my dear and knowledgeable friends here assured me that all you described (and more) are normal. There was one night that I thought Sadie had passed away lying next to me in bed. I called her name (she knows her name and always responds), nothing. I sat up and called her name, nothing. I flew out of bed and switched on the light and she put her sleepy head up as if to say, “Come on now! Turn that light off – I’m TRYING to get some sleep!” – goodness gracious. Welcome to our crazy paranoid AIHA club – and trust, you are not alone. And then she did this commando crawl – which was very weird indeed. That only lasted a few days, but the panting and being tired is still present, although she is showing some spunk lately since getting much lower on her meds (weaning). She was also very antisocial. Not in a mean way, just in a ‘leave me alone’ way. She gets along great with other dogs. Even her best playmate buddy down the street could not get a rise out of her.
In only three months her vet started to wean her. She did great at first and then on the last weaning dose, crashed and collapsed. Relapse and back to square one, 40MG pred, 50MG Atopica. Now after a year, we are continuing to wean her SLOW, SLOW, SLOW. Sadie will most likely be a candidate for lifetime maintenance of prednisone, but a low dose. We’re not quite there yet, again, taking it very SLOW.
I know some of what we are saying may seem contrary to what you are doing. Please don’t get discouraged and feel pressured. It’s just that we all have been right where you are right now. Talking to the vets, the whole nine yards. It’s mind blowing, the information overload. And you think you have it, starting to understand and you’re okay with the ‘plan’ and we come in and stir things up again. But really, if this IS AIHA, the prednisone should, in my very humble opinion, be higher AND adding Atopica should be considered. Print this post and take it with you to the vet. I bet she/he will be proud of you for doing your research. Sadie’s vet was VERY impressed with the knowledge here, realizing – this information is from folks that have dealt with AIHA for many, many years and have lived it. We have lost too many, but AIHA CAN BE BEAT.
I know it’s hard, but try to be confident and supportive with Lola. They pick up on our angst and it can be detrimental. Smiles to them are good. :)
Also, just to add to your whiling mind, the tummy protection mentioned – a must. The liver protection mentioned – a must. The anti-clotting protection – a must. These drugs play havoc on their little bodies. The precautionary supplements mentioned will keep her organs healthy and working and therefore, help her body fight the AIHA. Otherwise, you’re helping the immune problem, but weakening the rest of the body.
Please, please don’t go away. Keep us posted. We are family here and have a tendency to fall in love with our ‘adopted’ AIHA fur family.
Love and supportive hugs, Linda and hanging-in-here Sadie
Good news since my last post! Lola has now had two positive vet visits!
After her crash, I had to travel for work and could not attend a follow-up appointment. (Lola sees the vet every two weeks.). My husband, Ryan, went with her, and her numbers were improving since combining the Prednisone, Azothioprine, and Melatonin.
Upon my return, we decided to put Lola on a more holistic diet in an attempt to control what goes into her system. She now eats a combination of the best dry food we could find, Orijen, Stella and Chewy’s raw food, and we are continuing to supplement her diet with boiled egg whites and raw green beans. As of today, she weighs 34.3. We are very happy with her current weight (prior to getting sick, she was overweight).
Lola had another check-up today, and we got great news. Her platelets were in the 600s (high but good), and she is acting like a new dog. She hasn’t felt this well in months. Her vet was very happy with her progress, and we are reducing her prednisone to 10mg every other day. We are continuing the Azothioprine an Melatonin. She has another check-up in two weeks.
We did visit with the vet about how many cases of AIHA our clinic has seen. They have actually seen this in several dogs and noted the alarming increase of AIHA cases. We do not have a teaching program in Arkansas, but they do routinely consult with an internal specialist regarding Lola and their other cases. Should we require a specialist, the closest program is in Memphis.
We discussed adding a protection regimen as has been suggested, but our vet felt that because her prednisone dosage is low and she’s had no signs of stomach upset, such protection was not needed at this time. Because she is responding well to the medicine, we are also comfortable with the Prednisone reduction.
Lola will now resume short walks (5-10 minutes) with her dog walker and us. She also got the green light to go to the lake today as long as the temperature stays low. Finally, we celebrated her 6th adoption birthday last weekend, and she had a big time!
Hi Ashley, I’m so pleased to see that Lola is doing better! My spaniel, Nula, also has Evans Syndrome. She was diagnosed on Easter Sunday. To give you an idea, she is 15kg and started on 15mg prednisolone twice a day, and 100mg of Atopica once a day. She had 2 blood transfusions and was inpatient for 10 days. We are only now reducing her prednisolone to 10mg twice a day, her Atopica is staying the same. The ladies on here give fantastic advice and have been a huge help in getting a grip on this. Nula too gets the panting and drinking lots etc. But it’s been worth the side effects. Fingers crossed for Lola, and happy 6th adopted birthday to her! Keep us updated! Xxxxx
Ashley,
how wonderful to hear that Lola is doing good! I am glad your vets are getting advice from a specialist. Have you suggested they consult with Dr. Dodds at hemopet? this would be a really good way to go.
I am a bit concerned about the prednisone reduction. I read that Lola was on 20mg per day and now you are reducing to 10mg every other day? Usually reductions are made no more than 25-33% I am not a math wizard by all means but in my head your reduction would be closer to 75%. Lola’s prednisone dose was on the low side to start with and if a low dose like that works that is great and you can probably reduce faster, but these reductions would worry me. It could set her back if she relapses. Of course I am not a vet and only speak from what I have heard and seen on my and other peoples dogs. I think it is a good thing that you are reducing the prednisone, I am just worried that it is too fast. Besides stopping the immune system to work (you want this) it also puts the adrenal glands to sleep. They have to woken up again very slowly so they can produce cortisol again. Up till now the prednisone supplied the cortisol. If you stop the prednisone too fast the body can go into a cortisol crash. You definitely don’t want that! I have seen it that someone gave their dog a smaller than usual prednisone dose and stopped it after only a few days and the dog was fine. But Lola was on it for quite some time so I am a bit worried.
One more concern, has Lola been tested for Tick disease? This is an easy blood test and should be done even if it is just for peace of mind.
I am glad you are feeding Lola the best diet you can afford! I would still look into a stomach protectant. Slippery Elm would be something more natural but the Sucralfate or Carafate is very good. I would also ask your vet if you could give Lola Milk Thistle and Sam-E to protect her liver from the harsh drugs.
Best wishes,
Brigitte