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Stopping copper

chadsmom
0 Recommendations

Has anyone found a way to stop the copper being pulled out of the blood from going in the brain and causing the neuro problems. There has to be a way to do both without causing more problems or making the ones you have worse. The doctors we have seen only treats the liver. They seem to be telling us that the treatment of the liver is most important and the others problems are just the way it is. If there is anyone that has had some help in this matter please let me know.

Explore topics in this discussion:

Amitriptyline Wilson disease Burns Syprine Cuprimine Penicillamine Stress

9 replies

Heron

Hi Chad's Mom,

Zinc will work the best to get rid of copper (by stopping it from getting into the digestive system) without stressing the brain and neurological system. What meds is Chad on? What are his symptoms? Are you working with doctors who are familiar with Wilson's Disease?

Ann

chadsmom

Hello Heron,
Chad has been taking Syprine & zinc since may 2007.
He is also taking amitriptyline for the drooling. We found a doctor in Dallas at Baylor Liver hospital that had one patient with Wilson's. We also have a gastro doctor close to home that was willing to learn more about the disease. We are seeing a new neuro doctor in a few weeks to try and help with the problems facing us now. Chad is having dificulty chewing and speaking. It's almost like he has forgotten how to move his tongue or as he says his tongue is to thick. but we think postive and hope for the best.

Heron

Hi,
I am sorry that you and Chad are having such a hard time!
It sounds as though something is not working well in terms of treatment. Maybe the protocol or the dosage needs to be changed. People sometimes get worse at first, but after two years, most people have improved rather than getting worse. I
I'd strongly recommend talking (soon!) to
Dr. Fred Askari, at the Wilson's Disease Clinic in Ann Arbor, MI 48109-0352
Phone: (734) 936-0499
Fax: (734) 763-4574
Appointments: Contact Patti at 800-395-6431
E-mail: faskari@umich.edu

He is very experienced with Wilson's and helped me and many others.

Schwebke

I was seen by a neurologist and he put me on cuprimine. It reversed all of the tremors etc. Perhaps that would help. It took me a year to recover. That was in 1972 and I still take cuprimine. Best of luck.

Heron

With respect to Dr. Askari, I should add that even though he is in Michigan, he will advise you and/or your doctor by phone and sees many out of state patients.

It might seem crazy to go so far from where you live, but people do it often, because there are so few doctors who really understand WD, and when standard procedures don't work, you need an expert.

Best of luck with everything.

Ann

frodoboy

Chad's mom:

Once again I stress that Chad may only need to be taking zinc at this point. syprine and D-Pen (cupramine, penicillamine) tend to pull the copper out through the brain. D-Pen is the worst for this! The only chelating med that does not do this is TM but that has not passed FDA approval yet sadly. Talk to Chad's doctor and see if he can be taken off Syprine. If his urine copper levels are good (below 100), he shouldn't need to be on a chelator anymore.

Casca

trientine and zinc helped me!

kld05

The information on the meds and the doctor really helped. My goddaughter currently is on chemo. Her hands and feet look like 3rd degree burns and her fingernails are black. She is having some neuro problems as well, such as having trouble remembering words when she's talking and sometimes with speech itself because of her tongue. She mentions also feeling like she doesn't have any strength in her limbs. But she says she just feels like a ginny pig because the doctors she's going to have never treated this before. So thank you for the info.

jayant

Friends
I am from India and my daughter is with WD since Oct 2000. D-Penicillamine (Artamine) was started in Oct 2000 & was continued till June 2008. The tests viz.-24 Hr Urinary copper, SGOT, SOPT, etc carried-out every month & were satisfactory. The test results of 24 Hr Urinary copper were within normal range. Artamine (D-Penicillamine) was stopped in June 2008. Benadon 1/2 Tab + Zinfate 1 Tab per Day continued. During this period she had done well in her academic study.

However it is noticed, since last few months, that the hand-writing (Quality & speed) is deteriorated, difficulty in speaking is also observed. We consulted doctor June 09. The MRI of the Brain is preformed in last week & imaging findings are consistent with W.D. Therefore Artamine (D-Penicillamine)-250mg per day is again started from June 09 (i.e. after 1 year’s gap). I hope this will improve my daughter’s performance.

Even though the 24-hr urine test results are within normal limits why the copper is accumulated in Brain? Is there any other reason?

Whether anyone had gone through such experience?

Is another test available to ascertain the accumulation of copper in Brain?

Kindly Inform.
Jayant

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