Re: Wilson's Disease

Posted By HFHSD.M.-dm on April 01, 1998 at 16:56:21:

In Reply to: Wilson's Disease posted by Rick on March 22, 1998 at 16:14:05:






A friend of mine is suspected of Wilson's disease, and is
scheduled for a liver biopsy soon.
He has done research on treatments for Wilson's Disease, and is
somewhat put off by the possible side-effects of the chelating
agent treatments.
His, and my, question is:  are there alternative treatments to
chelating agents, and are there any "natural" remedies that don't
involve rigorous medical interventions?
Thanks!



___

Dear Rick:
I really appreciated your questions.  Its always a pleasure to answer questions about Wilsons disease because it is an unusual disease even for liver specialists and because it is a disease than we can effectively treat.  As I noted Wilsons disease is a very unusual disease and one of the most critical things is that the diagnosis be made accurately.  This is especially important because once drugs for Wilsons disease are started, it may be difficult to accurately assess someone for the diagnosis of Wilsons disease again.  
I dont blame your friend for being put off by some of the side effects of chelating agents, especially penicillamine.  A lot of patients have side effects of these drugs and some cannot tolerate them long term.  I want to make a couple of critical points.  First of all, there are no natural remedies for Wilsons disease of which I am aware.  This is extremely important, because true Wilsons disease is almost uniformly fatal if not treated appropriately.  On the other hand, patients can do extremely well if treated properly.
In response to your second question, there are some alternatives to chelating agents.  First some of the newer chelating agents are better tolerated than penicillamine.  In addition, there are very interesting results being obtained with non-chelating agents including zinc and ammonium tetrathiomolybdate.  While these agents, especially the latter, have to be considered experimental, early results are very encouraging.  While penicillamine (a chelating agent) is still the most tried and true drug for Wilsons disease, some of these other drugs represent options for patients who have problems with penicillamine.  
I hope this is helpful to you and I hope things go well for your friend.  If you or he have any additional questions or want more information, I would certainly encourage you to contact me without hesitation at [phone].  I would also encourage you to contact the Patient Support Group for Wilsons disease.  
This response is being provided for general informational purposes only and should not be considered medical advice or consultation.  Always check with your personal physician when you have a question pertaining to your health.