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