We were fortunate to have found this forum and started using the B6 from the beginning and have not had any issues with eating or nausea.

We are nearing the end of the 6 months treatment period for our toller although the vets from OSU have ordered up another years worth of penicillamine.

We are concerned about doing another biopsy as surgery can be hard on the liver. What are your thoughts about a second biopsy after treatment?

Folly's copper levels were extremely high.

Currently, she has lots of energy...is doing agility classes and continuing with her therapy dog work once a week. She has put some weight on and we are working to
get that under control.

Thanks

Cindy

We were fortunate to have found this forum and started using the B6 from the beginning and have not had any issues with eating or nausea.

We are nearing the end of the 6 months treatment period for our toller although the vets from OSU have ordered up another years worth of penicillamine.

We are concerned about doing another biopsy as surgery can be hard on the liver. What are your thoughts about a second biopsy after treatment?

Folly's copper levels were extremely high.

Currently, she has lots of energy...is doing agility classes and continuing with her therapy dog work once a week. She has put some weight on and we are working to
get that under control.

Thanks

Cindy

Right before Christmas Theo saw his internist. It was almost a year from when this journey started. He got a clean bill of health and all of his liver scores and other blood scores were normal. The vet had been weaning Theo from the penicillamine for some time and I was looking forward to the day when Theo would no longer need penicillamine. But that is not to be. My internist vet is following the protocol provided to her by Dr. Center. Per the protocol, Theo will stay on a low dose of penicillamine (and B6) for the rest of his life.

Dr. Center's protocol got us to where we are today so I have no complaints. Plus it does provide some peace of mind. Theo is taking classes to become a certified therapy dog. He has his CGC and at the end of this course he will be therapy certified and have his CGCA. The exercise for the "leave it" command is a challenge for Theo. After performing it correctly a few times, he made a dive for the treat-- a turkey brownie! At that point I was glad he is still on the penicillamine. Poor Theo, he got tired of Craisins and animal crackers as training treats!

During the weaning process Theo first transitioned from 1 capsule twice a day to one capsule once a day. After several months he then transitioned to 1 capsule every other day. After 3 or 4 more months and good blood tests he transitioned to his maintenance dose which is 1 capsule twice a week. So for the rest of his days Theo will be taking his penicillamine--1 capsule every Monday and Thursday--- always accompanied by his B6. The other meds he will always take are: Phoschol, milk thistle, SAMMe and vitamin e. Theo will turn 11 years old in April. God bless all of the wonderful, knowledgable vets who saved him.

The gold standard is a second biopsy to evaluate the efficacy of the treatment; however, most owners don't do it. In that event, Dr. Center has a standard protocol based on the copper quantification from the first biopsy, the extent of liver injury from the pathology, and looking at the liver enzymes, which should return to normal.

Mine is having her second biopsy middle of February, after 10 months of chelation. Her ALT only returned to the normal range in December.

I have switched all my dogs to AvoDerm original Lamb & Brown Rice. It is costing me about $1.70 per pound of dog food so it is not either the most expensive nor the least expensive dog food available. The dogs seem to like it. And gastrointestinal products look OK. The copper content is 7.5 mg/kg, which is just slightly above the 7 mg/kg therapeutic diet produced by Royal Canin for liver disease.

Two flies in the ointment are that I must special order it from my local retail store or buy online and that Breeder's Choice who produce Avoderm had a recall in 2012 for salmonella.

Another possible food was Honest Kitchen but this is a dehydrated food that needs to be reconstituted with water before serving and is incredibly expensive.

Months of searching. Hope it helps someone else. Kate

I have a 10lb chiweenie who is struggling hard with liver disease. I am curious about PhosChol , and what a dosage would be like for her. My vet doesn't know about it, and I talked to another that said dosage for such a small dog is hard - and to not do it. YET, I'm afraid because H.E is getting bad.

I have her on: cerenia, prednisone (1mg day), ursodial, zinc, vitamin e, milk thistle, samE (I use to have her on denamin, but didn't seem to be doing much so I switched samE), tumeric, missing link supplement (gonna switch to Balance CU)...

I also give her low/no fat yogurt with manuka honey for snacks, but her appetite is good. I give her sweet pototates/white potatoes/ground turkey, sometimes egg whites/ white rice....

But I feel like I do not have things dialed in, she is getting worse -- though she just stopped metronizadole for 3 weeks.. though I don't think that it helped much after the first week. (previously, it worked well, this time, seemed to make her HE worse).

any ideas/thoughts?

Thanks for the food info, Kate. My lab, Lincoln and I are just starting down the Copper Storage Disease path and everyone's comments here make me feel much better. Lincoln flatly refused to eat the Royal Canin hepatic(perhaps this just shows his basic good sense) although he has never refused to eat anything ever before. Anyway, with our vet's approval we are going to try the AvoDerm Lamb meal and brown rice. I noticed that their red meat and potato formula also has 7.5 mg/kg of copper. Your information saved me hours of searching and I really appreciate it.

I just came across your post in a search for low copper dog food recipes. Our Black Forest Hound was also just diagnosed with Copper Storage Disease. Everything I have read so far points to genetics, but his breed is not known to be genetically predisposed, and we are in touch with his breeder and there have been no reported cases in his blood line. Could it be that his dog food has poisoned him due to the excessive copper content? Even the prescription food we have order in exceeds the amounts of copper that I have been able to find as the recommended maximums with Copper Storage Disease (the references I have found state < 5mg/kg of body weight, and the prescription food contains 7mg/kg of body weight). I was thinking about giving him some prescription food and supplementing with other low copper foods (I am a Registered Dietitian, and have worked with humans with Wilson's Disease, so feel comfortable with doing this, however, I am not that knowledgable about canine nutritional requirements, and don't want to cause micronutrient deficiencies by not giving him the right amounts of food). Any suggestions on low copper home-made meal recipes that would meet his nutritional requirements?

I hope that you read this entire thread because it addresses many of the issues that your posts has. I feed a copper-free diet that is made from recipes I got from Balance It. They provide a nutritional supplement so that the recipes contain what a dog needs without copper. The recipes and supplements are designed by a veterinary nutritionist who started Balance It. I highly recommend it.

I feed all my other dogs Avoderm Lamb & Rice which contains 7.5 mg/kg, the lowest food I have been able to find.

Kate

My lab has this condition. He is taking, and tolerating well, Pencillimine, which he has been on for 4 months. His enzyme levels are improving slowly. He also has epilepsy, which we are managing well, although he had to change from Phenobarbital to Keppra because of his liver condition. Otherwise he is in good health, unfortunately he doesn't like the prescription dog foods. He refuses to eat Hills, wet or dried, and is now going off Royal Canine. Does anyone have any suggestions? He's not a fussy eater otherwise, happy to eat the bits of cheese, egg white and chicken I use to get him to eat the quantity of pills he has to take.

Avoderm Lamb and Rice has only slightly more copper than the prescription diets.

Honest Kitchen.

Homemade recipes from BalanceIt.

Good luck with your boy. Kate

Thank you so much for your forum and for all the work you've done researching this condition. I'm definitely going to check out AvoDerm and run it past my vet. Nelson loves lamb so he should be pleased.

My 4 year old lab had copper storage disease confirmed this summer. His surgeon did find scarring during his liver biopsy. We have been treating him with penicillamine for four months. He was also taking cyclosporine but we had to discontinue that because he kept getting infections. I'm writing to see if anyone else has had issues with the blood protein levels (albumin) being slow to come back up to normal. Bandit's are still low, even though his other levels are now in a normal range (they were off the charts when we first discovered his condition this summer). Also, I read that some of you are continuing penicillamine treatments at low doses for life. Is that correct? I just want him to have the best chance possible. We love our boy and want him to keep getting better. I'm open to all suggestions (medicine, diet, etc) that have worked for you guys.

It will be 2 years this January that my now 11 and a half year old lab was diagnosed and began treatment. Theo takes his penicillamine and B6 twice a week. The vet said he will always stay on a low dose penicillamine. He is also taking his Phoschol, SAMe, vitamin e and milk thistle. He has a great quality of life and got certified as a therapy dog earlier this year. Theo's blood tests haven't shown any issues with albumin. His issue recently has been very slightly elevated creatinine levels. I hope your lab does well. Eventually all of "this" becomes your new normal. My vet said Theo's life expectancy will not be affected by copper storage disease. Best wishes!

Welcome, Deborah, to the thread no one ever wants to join. I'm so sorry for your boy, but I am glad that you are getting help.

My girl Sassy was first diagnosed about two years ago when I started this journey and this thread. She had great difficulty tolerating the d-penn so she was taking a reduced amount until April of this year when she began to have intermittent bouts of vomiting and diarrhea.

I took her off the d-penn because it appeared to be causing her GI distress. We could not figure out the whole picture and her weight dropped from 65 lbs to 47 lbs. We began treating her as if she had inflammatory bowel disease using steroids and many small meals a day. For the last two months we have decreased the steroids and slowly increased her food through small meals. She is gaining weight and is off the steroids for the last couple of weeks.

I doubt that I will ever risk putting her back on the d-penn because she nearly died from the GI problems. So for now she is taking only Vitamin E, PhosChol, and Omega 3. When she gets back up to a normal weight, I will add back the Denamarin.

She will be 11 in February, but at diagnosis she was not expected to live. So I think we are doing well managing her liver disease.

About the albumin levels, she is normal. Kate

Hi Kate and all,
I have a Duck Tolling Retriever, Folly, who was diagnosed with CAH almost two years ago in March. Later that spring, we found she had crazy high copper levels and began our journey trying to control this issue. I found this thread to be extremely helpful as I educated my own vet through this process.

As her liver showed much scaring and damage, we started Folly out with steroid treatments that are typical with chronic active hepatitis but Folly did not do well with the pred. We stopped the steroids after several months.

She currently takes D-Penn, vitamin E, Vitamin B-6, Ursodial, and Denamarin (with Phoscol thrown in from time to time) She is on a liver diet.

My dilema...Folly has been on her full dose of D-Penn for 16 months now. She seems to tolerate it well...in fact the vets at Ohio State want her to lose a few pounds. I am concerned about long term D-Penn usage but have not been able to find out anything about this topic.

Folly's liver enzymes tend to fluctuate somewhat from normal to a slight elevations in ALT. We do bloodwork quarterly. We don't know why the fluctuations occur.

Her energy level is good...she does agility and is a therapy dog.

I know a second liver biopsy is recommended but we just lost our other toller to cancer and I dread the thought of putting Folly through a second surgery.

Any thoughts on long term D-Penn usage. Folly will only be 7 in January. When diagnosed almost two years ago, she was given a guarded prognosis.

Thanks

Cindy

Cindy, about 20-30% of people being treated for Wilson's disease discontinue treatment with d-penn because of side effects, especially GI side effects but also kidney problems. In one study nearly half of the participants had to stop taking the d-penn. Kate

Kate,
Thanks for the info. Maybe that explains why my vet also does a urinalysis when they do the quarterly bloodwork on Folly? We will be doing more bloodwork this month. I am hoping everything is back in the normal range.

Cindy

Your vet should get a creatinine and/or BUN level to assess kidney function. Ask for it. These may be part of the blood work that your vet plans, but I would ask to be sure because some vets don't know that d-penn can affect kidney function. Good luck and keep us posted. I think we all learn from these experiences. Kate

Great...Thanks again Kate. I will ask about these other tests. As always, you and this site have been a wealth of information.


Cindy and Folly