Overwhelmed and don't know what to expect- just started Prednisone on Charlie

[Patrice]

Deb,
The early days of manufacturing cyclosporine were difficult and there were two processes. One process led to a less bioavailable and stable dose, which could have led to a patient rejecting their transplanted heart! The newer process is far more stable and bioavailable. There is no longer a need to worry about the dosage variability in any form of atopica or generic cyclosporin sold for dogs, it is highly stable and the processes are all the same now. There is no need to monitor the blood concentration on Dr. Dodds protocol, she is giving a 2 day drug holiday when she pulse doses!

[Vally]

Deb, Dr Dodd’s fee really is one-off. If you do the consult, put as much information as you have and attach copy of blood results. When you upload information, it only accepts one attachment, so best to scan everything into one document. I did an explanation of what was happening as I could prepare it and then attached blood test results and scanned into one document and attached.

Once she responds, you can simply reply to her email with any other questions, she’ll respond again, and on and on. I found she is a lady of little words, so if you contact her, don’t be put off by her short replies. She understands what you are going through. She really is amazing and has helped so many of us here. Be as clear as possible with your questions.

Foodwise, I used to feed Bingo a raw diet, but after a particularly bad gastro episode that landed him in hospital, they suggested cook everything as the immuno-suppresents make it hard to fight of any bacteria they would normally not have a problem with. I used to do mainly boiled chicken with steamed vegetables, pumpkin, kumara (sweet potato), peas, carrots, white potatoes.

Vally

[Deb]

Thank you Patrice for your very indepth and knowledgable post regarding AIHA/IMHA and bone marrow failure. I have very little understanding of hematology and have just relied on the experts to interpret the lab results. Your observation regarding the university running a gob of tests searching for a cause is spot on and insightful.

A couple of clarifications: Charlie was only on the azathioprine for 5 days before I stopped it when he quit eating and drinking and was throwing up. I don’t think that was long enough to cause any marrow suppression??

Also prior to Charlie’s trip to the university, he had a lab panel drawn and actually had 2.2% reticulocytes which was new for him- in August it was 0.5% and all the times prior lower, so we were thinking he was regenerating new RBC’s. A week later at the university (12/21/17) it was 1.77%. Their diagnostic notes indicate: “Charlie had a hematocrit of approximately 27% as well as evidence of a regenerative response and immune-mediated destruction of the RBCs (auto-agglutination and spherocytosis). Additionally he had an inflammatory leukogram characterized by an increased number of immature white blood cells in circulation. He also had a very high platelet count.”

Because they found auto-agglutination wouldn’t that be the debris in the circulation that you indicated is not seen with bone marrow failure? I think this is why they diagnosed with IMHA. From what you are posting bone marrow failure which is still treated with immunosuppressants, but cyclosporine as the mainstay instead of pred as in IMHA/AMHA?

After I stopped the azathioprine which was last week on Thurs 1/4, he had blood work done again, was dehydrated and had IV fluids. His reticulocyte was down again to 0.2%. On Friday, 1/5 I started the prednisone so he has only been on this 6 days and we will check bloodwork again the end of this week and look at his HCT and hopefully can taper. I will discuss with my vet if he feels further input from Dr. Dodd would be helpful.

If we are treating incorrectly, I am interested in the possibility of using human cyclosporine without the monitoring as you mentioned instead of having to use the veterinary Atopica if Dr. Dodd has had good luck with this. I did notice in her protocol that she mentions Neoral which is a human brand name of cyclosporine. You mention that the doses were high and it wasn’t pleasant for Chance…what side effects was he experiencing?

I am still a little confused Vally with a one-off consultation fee…I’m thinking that is an Australian term…do you mean a one time fee that includes followup questions/lab review or that is the fee for just an initial consult with billing for further questions/lab review? It sounded like you both had a lot of interaction with Dr. Dodd than from just the initial consult, but not sure how the billing was handled regarding this. Also instead of having to do a full document to up load it would be easier for me to fax her all the info as I noted that she does have a fax number listed for her office. I don’t suppose that would be an option from Australia.

Again thank you so much for your advise and support.
deb

[Vally]

Deb, yes, sorry it does mean you pay one fee when you put the consultation form through and once she has emailed you, you can continue to sendher blood tests for review or further questions about Charlie and his IMHA diagnosis. I did follow-up emails with her about Bingo’s liver enzymes which started going up again, questioned drug reductions.

Vally

[Todd]

Deb,

I have yet to post on the forum, but will in a few weeks when I hit the 1 year mark with my dog Colby.

I will say unequivocally that this site has been pivotal in the info it provided. I got a real good education after Colby’s first couple of months reading through the site and of course, finding the access to Dr. Dodds and Hemopet. When reading about IMHA/AIHA on the net I had come across Dr. Dodds name but had no idea how to reach her or consult. Then I came here. I had reached out to Dr. Dodds in April or May of last year. As stated, you pay for the consultation one time and upload all of the records. I also uploaded the current med schedule and and changes that were not reflected in the medical records. I kept a diary of changes etc and sent that as well. Oh, just remembered, I did have an issue when I first signed up for the consultation. Didn’t seem to go through properly and I had then emailed or called the office and then they saw the error and was good to go. Think they got the payment and not the actual consultation info/attachments. Probably something odd with my browser but just in case you can follow up to make sure in case the process doesn’t go as stated in the instructions.

I have emailed Dr. Dodds follow-ups a ton of times. Yes, answers are short but I typically email back with specific follow up questions to make sure I understand etc. She is super quick at responding. She does travel so sometimes she is out of reach on those travel days. However, you get an email reply back quickly to that fact, from her office staff, then states when you should hear from her.

While I credit the animal hospital for saving Colby’s life, I credit Dr. Dodds for keeping her that way. There are aspects to her protocols that are not done by other vets. While I see my normal vet, everything gets run through her before I make any change, etc. My vet, who is in my extended family, has no issue with that and has prescribed any medicine that Dr. Dodds has suggested. No idea if Dr. Dodds prescribes meds or not.

Having someone like Dr. Dodds is key since many vets tend to make choices maybe based on symptoms or just what they know from past experience. However, when it comes to these types of situations, you want a specialist who has researched and understands the disease(s). For example, just a couple weeks ago, my dog was having a long bout of gastric issues.
I also had the vet check her blood levels, since it was about 3 months. All came back perfectly normal, for which he was shocked from what my dog has been through. Vet was saying that it could be as a result of the mycophenelate she is taking and if it was his dog he would stop it. especially since her levels are normal. did tell me to run it by Dr. Dodds, which for me goes without saying. As I suspected, Dr. Dodds told me that most likely my dog will be on that immunosurpressant long term if not forever. If the only voice I had was my vets, which seemed rational, it could have spiraled into a re-lapse. Instead, we changed her diet and I am now making better food for my dog then I do for the family.

[Deb]

Todd,
Thanks for the encouragement and reply. Patrice and Vally have reached out to me offline and recommended that I contact Dr. Dodds and I have. You are right that she is very quick with her responses- even in Italy and Dubai this last week, however, very short and not always anwering my questions fully and I have to keep reasking.
This last week was especially rough for me, really considered putting Charlie down, and Dr. Dodds told me not to give up, when my vet was encouraging me to be realistic- and Charle was somewhat better this weekend.

My situation is different than a lot of you as I have a very geriatric dog at 15 years old . I am realizing that I’ll never have my “old” dog back, but he still is my only companion and I still want his company as long as he is not suffering…although it is really placing a toll on me with nursing care.

Last week I didn’t think I could even get him into the vet clinic, he kept falling even trying to walk. I’ve started accupuncture and I think it is starting to help him.

Then there are the bouts of diarrhea, the courses of metronidazole, the getting up 2-3 times a night to pee as he is on prednisone. I am getting his dose down and he is now down to 10mg daily (from 40mg daily 2 months ago). He still cannot get to a laying down to a standing position without my help even on carpet, so I can’t be gone too long as he is unable to get up, get to water, gets sore laying in one spot…which is a challenge with working.

I do have a question regarding diet…I have been making turkey burger/rice and mixing with his regular food as I really haven’t found what I should be feeding him. Dr. Dodd said a cancer sparing diet…but no recipe. He does not have a spleen so it can’t be raw. He has a lot of gi problems- sensitive stomach right now so hesitate to change much until this is under better control .

Thank goodness he has an appetite with the prednisone, the azathioprine just about did him in with quitting eating/drinking, vomiting.

Per Dr. Dodd I’m giving him slippery elm for the diarrhea, Nutrigest (vitamin and probiotic) and T-relief green and red and DPLA for his arthritis- but doesn’t work like his remidyl did for him. Also per Dr. Dodd started him this last week on thyroxine and denamarin and I think these are also helping him.

It certainly is a battle, I’m just not sure when it is time to surrender, I’m always second guessing that I’m doing the right thing, so it’s nice to have Dr. Dodd to bounce things off of. I do trust her judgement but have a difficult time balancing what she recommends vs my vet who is also my son which makes things a little touchy as I don’t want him to think that I don’t trust him. He however has not been very encouraging and feels I’m delaying the inevitable. It’s a difficult spot to be in.

Appreciate the post and glad things are going good for your Colby.

[Todd]

Deb,

Correct. Not in a similar circumstance in terms of age. My Schnoodle is almost 10 I believe. Almost a year ago, I was in the animal hospital all alone speaking to my wife and wavering about putting her down. Especially when hit with the estimate for care possible transfusions, etc. Waited for most of family to come and say goodbye. We were also conversing with our personal vet and he said if it was his dog, especially his 1st, he would try at least to save her. While my daughter was alone saying goodbye I turned to my wife and said we could spend this money on a lavish vacation that we would most likely forget about in several months but if we did save her and even got a few short months more then it would be worth it.

On the flip side is what you are going through now. I didn’t fully understand the long road. Not that this would have changed my choice. We loved her just as much if not more while she wasn’t eating, had accidents, couldn’t play, couldn’t jump anymore on the couch or bed, etc. The medicine does take its toll. Colby has bounced back.

Colby just got off my latest round of Metradazonole. She is also on Thyroxine(Thyro-tabs), Denamarin, Pred, Slippery elm and Nutrigest . Colby is also taking pet-tinc and mycophenalate for her IMHA.

Typically we have bowel issues every 3 months but just went through 1 month spell. So, recently started with the nutrigest, re-started slippery elm and change of diet. Colby was previously on regular dog food but I picked stuff that contained good ingredients. Previous to this, Dr. Dodds didn’t want me changing anything, since Colby was responding well. Now, due to the bowel, probably from the steroids, Dr. Dodds wanted me to give her real food for her sensitive stomach. So I have been making Cod, steamed veg and white rice. So, this is one of those times when I got a simple response from Dr. Dodds stating white fish, veg and rice and then I emailed back for more specifics like what variety of fish, which veg, what type of rice. Is it just steamed, etc. Any other protein besides white fish etc. What spices should/can I use, How much, in terms of weight, do I give of each (fish/veg/rice) etc. Got more detailed response. So for past 2 weeks I have been making cod with zucchini, carrots, chick peas, spinach, white rice, salt, pepper and oregano. Have lately been making one large batch (small dog) for week and dividing it up into baggies for each day (have been doing 2x day) proportioned. When I go to feed her, I make up a mix of slippery elm and the nutrigest in water and create a gravy of sorts which I mix in the food along with the pet-tinic (vitamins). She gobbles it all up. I do split the portion and give half and then wait 45min to hr for second half of portion since she has thrown-up if she tries to eat it all at once or too close together.

Send Dr. Dodds an email asking for some guidance on exactly what a “Cancer sparing diet” contains.

[Deb]

Todd,
Again appreciate your input. I’m glad you decided to spend the money to save your Colby. I know people think I’m nuts for the amount I have spent this last year as Charlie had lymphoma of the spleen and had surgery for that and also found leiomyosarcoma of the intestine which was also removed…that was in April last year. They felt the anemia would resolve after the surgery and it did not and then he was diagnosed with AIHA in December and the roller coaster began. He has been to the university hospital 4x in the last year, so I also have forgone my vacation this last year and will probably have to work another year instead of retiring this year. In the end they are family and you can’t put a price on that.

So I will pursue the food issue with Dr. Todd once I get past the latest hump. I’m doing a mini-version by using the ground turkey and rice which is easily digested along with his regular food which is also high quality. My biggest problem right now is his mobility and hind end weakness…I’m hoping he will bounce back when we reduce the dose of prednisone. It sounds like we are on a similar protocol…how much pred is your dog on? (Charlie is 50 lbs)…why the mycophenolate? Did Dr. Dodd think the diarrhea/gi issues would resolve with your homemade diet instead? Have they?
Thanks again