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Hi Beth,
As Sheena mentioned, I did have to switch vets and it made all the difference in the world. I also consulted with Dr. Dodds, she is incredible, has 50 years (!) of experience in hematology, as well as immunolgy, endocrinology, and now she has been studying nutrition and epigenetics and has just published a book on that subject. Recently our specialist and I became discouraged about Ashki’s progress because he went through a relapse and was stalled and she called Dr. Dodds and had a long conversation with her; Dr. Dodds was so encouraging, told her we were doing everything right and just needed to be patient, and also suggested that we add folate rich foods as this can be a piece of the type of IMHA that Ashki has. Well, Ashki is improving!! I am just thrilled.
I give Ashki 1 gram of sucralfate in tablet form twice daily, two hours away from all meds and meals. I set an alarm for 4:45 am, but I usually give it to him when I get up to pee in the middle of the night LOL and then cancel that alarm.
Ashki has lost a lot of muscle and weight, the pred is hard on him, but the denamarin and hepatosupport supplements are keeping his liver happy, thank goodness. The good news is the liver can recover from a certain amount of damage.
If you can give Heathcliff more meals that will help his liver and his GI tract; Ashki gets 4 meals plus a snack right before bed. I know that can be difficult though if you are working full-time.
I do need to give the denamarin on an empty stomach, so you may need to give the marin on an empty stomach too. You could just add sam-E along with the marin, and Dr. Dodds would be able to advise you about that. We did have one dog here, Hope’s Steve, who seemed to be sensitive to sam-E, so if you see any weird changes when you add it let us know, Patrice figured out it was the sam-E with Steve.
Sending you big hugs, let us know how you all are doing.
tamara and ashki
I forgot to answer your question about other immunosuppressants. When Ashki was diagnosed he was at 10 (eek!) and his bone marrow had failed, so he was put on pred and cyclosporine (100mg BID – he weighs ~60#). He did not respond, so about 2 or 3 weeks later we added mycophenolate (250mg BID). We did have an episode where his liver enzymes skyrocketed, that’s when we added denamarin. We also added ursodiol for 30 days (an rx supplement for gall bladder support) and metronidazole also for 30 days as he was showing some inflammation in his GI tract. His kidneys became distressed though, so we started weaning the pred pretty aggressively, he got down to 20mg/day. I then switched vets, and she put the pred back up to 30mg/day but cut the myco to once daily as myco can suppress bone marrow. Ashki started recovering, very slowly, and his kidneys improved. We started weaning again, and then he dropped from the mid 30s to the mid 20s. We put everything back up, and the pred up to 40mg/day and he stabilized, but his kidney numbers got worse again (pred can cause kidney problems too. sigh). After our internist consulted with Dr. Dodds, we cut the pred to 30mg one day, 40mg one day, and added folate rich foods. He increased from 25 to 27 to 31 and that’s where we are today. I hope that all helps, let us know if you have any questions or how we can help.
tamara and ashki
Oh wow you are all so lovely! Heathy sends a special waggy tail to you all :)
Today has been a little roller-coaster like. I started it in such a state, but now i have your help, and through that have contacted Dr Dodds, who has replied ALREADY! I feel a bit more at ease with the situation. I have to say, you are all so right, Dr Dodds has already impressed me a hundred fold!
Vally, thanks for all the meds advice. Since the pred dose came down and the azathioprine was stopped, i have him on this schedule:
6am prednisone 40mg, pepcid 20mg, quarter of a baby aspirin (20mg) with food
6pm prednisone 40mg, pepcid 20mg, Nutramax Marin 1 and half tabs with food
This evening i fed him the pepcid about an hour before his meds/food.
I have asked my vet for a sucralfate prescription (tablets). Which i’ll pick up tomorrow (thankyou for that advice Brigitte!) I will also seek out the denamarin and buy some of that instead of the marin, it looks like amazon have it. I have him now on the liver cleansing diet, which he is eating a lot of, no surprise! However when i did my usual check of his poop for any signs of blood, i noticed that it appears that the food is passing through him without a lot of digestion (??) His poop is formed/solid but appeared to be very identifiable as what went in his mouth eg sweet potato etc. Is this ok??
Dr Dodds seems to think its ok that he is not on azathioprine if it is not tolerated, and has given me a protocol for reduction of his pred. It seems a little aggressive, but i think this is due to the fact that he has ‘bounced back’ so quickly to 36% from a not so bad figure of 16%. This insight makes me even more amazed that they had put him on such an aggressive level of pred, as he never went below 16% at his worst.
Sheena thanks for the reassurance that some others have seen these levels of liver enzymes, that made me relax a little and about pred head… He is a Staffie cross and used to have a lovely muscular head, as they do, he has lost all of that and his eyes pop out a lot now. Most of all thanks for reassuring me that i could trust Dr Dodds, i feel like I’m in safe hands now, whatever happens. With that in mind, could anyone give me an approximate idea of how much internal medicine specialist cost? Is it a lot above a standard DVM?
Finally Tamara, ahhh very early mornings have become standard here now so i am happy to give him the sucralfate when i get up for a pee :) In fact I’m up every 2-3 hours as Heathy has needed to pee that much. I’m glad Ashki is doing well, love to him. Two things, i noticed the heptosupport has more milk thistle in, do you adjust his denamarin dose for this, or just let him have the extra amount on top of the recommended denamarin dose? What dose have you got Ashki on? Also, may i ask what the reason for giving it to Ashki on an empty stomach is? Should i be looking to do this?
Wow, sorry about the long message! I meant to write earlier but feeding/shopping for/caring for Heathy, and then myself seems like a full time job! I have even more respect for single mums now! I’ll try keep it shorter next time!
Love to All,
Beth and Heathy
xx
Hello Beth,
having Dr. Dodds on board is a huge step in the right direction. What ever happens, if you have her input you know you do the best you can. No need to keep your posts short, the more we know, the more we can help you. Obviously we like to hear how all these dogs are doing and every one of them becomes special to us! Don’t just share the medical stuff, let us know how Heathy is feeling, what you do together, how his day looks. I love to hear all that.
No kidding, caring for a dog with this disease is a full time job! But you know what, it will become second nature and you just do it. I compare it with having a new born. You just get up in the middle of the night and take care of that baby. It can get tiring though and it is nice to have someone you trust help you every once in a while. I was lucky with my husband and adult daughters helping out so I could have some time out here and there. This is an other reason though why it is good to have a pill chart. If someone else is taking over they have the chart and nothing should go wrong, no explanations necessary.
The not quite digested food sounds strange. I just went to a dog nutrition seminar and the importance for digestive enzymes (even for healthy dogs) was stressed. I have a Standard Poodle that is pretty fussy and I have given him digestive enzymes of and on, when I thought of it. After this talk I have become relentless at giving it with every meal. Sure enough his digestion has improved a lot. Maybe worth a try? The product I use is Aurion-Digest7 (it is fairly pricy about $60 but it lasts for 3 months) and available at my holistic vet. But there are many products out there. I think that could help Heathy. It is just sprinkled on the food so that is an easy one to give. Dogs have a very acidic digestive environment and together with the prednisone they are prone to stomach ulcers. That is why I suggested the sucralfate. Make sure to give it away from food and other medications.
Sometimes Dr. Dodds is recommending a fairly quick prednisone reduction. I think the dose is still to high for the adrenal glands to wake up. Maybe as you go, she will recommend smaller and slower reductions. No matter what, anything she recommends I would follow.
Sorry I have no answers for your other questions but I know someone here will and give you some insight soon.
Best wishes to you and Heathy,
Brigitte
Hi Beth and Heathy — we love long messages here :) because we want to know everything that is going on with our dogs and with each other.
I was told to give denamarin on an empty stomach because of the enteric coating, it breaks down better on an empty stomach, so I give it an hour before his dinner.
Re. the additional milk thistle in the hepatosupport, I just give them both and it’s been ok, the vets have been okay with it (we also have an holistic vet on our team who recommends and advises me re. supplements). Ashki is on one denamarin daily, the large dog amount (425mg sam-E/35mg silybin) and two hepatosupport daily, one with breakfast and one with dinner. He is on a truckload of other supplements, including quite a lot of GI support as he has a history of GI problems. He’s on enzymes and probiotics. I have had good luck with the Rx Vitamins for Pets brand, they make the Hepatosupport and also make a probiotic for pets and a digestive enzymes for pets too.
Ooooh, I remember those nights when I was up every few hours with Ashki getting me up to go out to pee! That does get better as the pred dose comes down. I know what you mean too about this being a full time job!! OH, one thing that may help with the food — I have started cooking Ashki’s food with extra water and then putting it through the food processor to make it like baby food (or a blender if you don’t have a food processor?) and that has been helping make his food more digestible.
I’m so happy you have Dr. Dodds on your team, she is just wonderful and so knowledgeable. And she will continue to get back to you very quickly, and is more than happy to talk to your vet if your vet would like to talk with her. She has been so wonderful to so many of us here.
Our internists have been expensive. I’m fortunate that our current internist is very sensitive about cost, and so we do a lot of our visits with nurse visits and the vet and I talk on the phone. That has been a huge relief, as this is one expensive disease to treat. She has also switched us to generic cyclosporine which has saved me an enormous amount of money, thank goodness, so if you need to add that drug let me know and I can get that information for you, many vets only want to use Atopica which is the brand veterinary drug and it is very expensive.
Sending you and Heathy big hugs and lots of love, we are with you and thinking of you.
tamara and ashki xoxox
Hi Beth & Heathy!
I absolutely LOVE Staffies/cross staffies – they have the nicest, sweetest nature – I bet he’s a handsome, affectionate chap.
Great to hear Dr Dodds is already helping. I see you’ve had wonderful advice from Vally, Brigitte & Tamara regarding diet etc. & I can’t think of anything to say that they haven’t already mentioned. It certainly looks like he’s not digesting / absorbing his food too well.
I mentioned that Worzel underwent a very scary 50% per WEEK pred reduction because he was wasting away so quickly – he looked like a bag of bones with a sore on his leg that wouldn’t heal up. This is NOT the recommended reduction protocol at all, but sometimes a faster reduction is needed for clinical reasons & I think the muscular dogs suffer more from the pred, although other builds of dog often tolerate it a little better. With Heathy’s liver enzyme levels, you have a very good reason to reduce. I made sure I knew what to look for in the way of problems (see Addisonian Crisis) – heavy panting, very slow pulse, cardiac arrythmia (irregular heartbeat), fainting, drinking loads of water etc so that I could take him to the vet if necessary. I also did a PCV/HCT blood test the day before & 4 days after each reduction to make sure the anaemia was still under control. I would advise you to do this too (local vets can do this, no problem) so that you can put your mind at rest & to spot any potential problems quickly. Small changes in PCV are not important, say a difference up to 5-6, but anything over that might need a temporary medication increase.
In the end, we were lucky – Worzel had none of these problems – I hope Heathy will be the same. He was really off-colour & a bit miserable the first 2 weeks of the drop though. I have had the misfortune to take pred for over a month & the reduction process is no fun – the withdrawal symptoms are really horrible – I felt like I had been punched all over & was sore to the touch, also incredibly tired. I think Worzel felt the same. But we got through it in the end – I admit I watched him like a hawk – none of us can help worrying, you know. Heathy’s adrenal glands will slowly wake up, start to work properly again & he will soon feel much better.
Anyway, I’ve wittered on enough – please, please keep sending long messages – we love to hear how things are going & to help with anything you are concerned about. When you have time, it would be great to hear Heathcliff’s story from the beginning. We would really love to see a photo of Heathy too!
Sending love & hugs to you both
Sheena, Worzie & Ollie xxxxx
Hey Beth, yep long answers are just fine.
Bingo has relapsed twice when doing his pred reductions, however, always when on the lower doses. Maybe whilst still on high dose pred, the 50% reduction doesn’t have the impact it has with lower because there’s still so much pred in the system. That’s not scientific – that’s my wonderings… I also noticed in the days after a reduction, he did look a bit off, but seemed to recover from it and then start to look better. Keep an eye on gum/eye colour and yes we always did a PCV after any reduction and Sheena has mentioned the symptoms of an Addisonian Crisis .
So meds, you’re currently doing, say:
5am – pepcid 20mg
6am – prednisone 40mg (with food)
6am – baby aspirin 1/4 (with food)
5pm – pepcid 20mg
6pm – prednisone 40mg (with food)
6pm – Nutramax Marin 1&1/2 tabs (with food)
adding in maybe Sucralfate at say 4 am (ouch that hurts as I type it), and say 10pm.
Also taking out the Nutramax and adding in the Denamarin at say 8pm???
Let me know if this sounds right and I’ll make up a chart for you.
And yes, we’d love to see what Heathy looks like. You can use the Upload your Photo on the right just under the other dog/cat photos. It takes about a day until it appears as it needs to be okayed. Stops spam getting into the site that way.
Luv Vally & Bingo
xxx