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Hi there
I am a WD patient. I would like to know that is there some cure for the black patches which WD patients usually have on their body. I discussed this with my Doc but she said that it will be better that if I don't start any treatment for this. Though I am following her advice but if some one knows any thing about this, pl. tell me so that I could discuss it with my docs.
Best wishes!
Rosepetal
I've never heard of black patches on your skin caused by WD. I don't have any black patches on my skin....
Dear Melissa,
Its good to know that you don't have these patches. I have such black patches on my hands and legs. Once a senior resident doc at AIIMS told me that such patches are caused by pecillamin.On the WDA site also a long time back I read that WD patients have black patches on their body. Some time back I asked my Doc that why don't they now keep me just on zinc. They told me that as since a very long time I am on the penicillamin and zinc therapy and I am also highly benifitted by it, they are afraid that any change may cause my condition to reverse. Though I don't have much complaints about these patches if they are due to the treatment which is keeping me alive and going but still if there is some cure for them, I would definitely like to get rid of this problem.
Love!
Rosepetal
Hi Rosepetal,
My daughter who had WD also had black patches on her body but that condition was daigonised as ITP(Idiopathic thrombocytopenic purpura) which is caused by low platellet count and zinc is known to lessen platellet also.I hope this information is useful to you.
Rgds,
Rajesh.
Thank you Mr. Rajesh Kumar for the valuable information. Does your daughter still have the patches. If they are gone did she get some treatment for it.
Regards and best wishes!
Rosepetal
Hello Rosepetal,
I have never had any patches on my skin and I have been on cuprimine for over 35 years. It's funny because my new liver doctor wants to keep me on cuprimine as well. I asked her about zinc and she just say to stay on the cuprimine. Perhaps a dermatologist knows about the patched.
Take care.
Linda
Ottawa Ontario
Dear Linda,
Its good to hear from you after a long time. I remember when I became the member of this site, I got so much motivation and encouragement along with some wisely advice and support from you. I hope you would be doing fine. I will try to see a dermatologist soon. I would like to tell you that these patches started with the Penicillamin treatment. Earlier these were very light, almost invisibe but now they are darkening day by day, that's why I am trying to find out. There must be some cure for it, somewhere?
Regards and best wishes!
Rosepetal
Lauren had tan patches on her legs and some on her stomach - they told me it was from liver disease and would slowly fade, most have gone -- they werent black tho..
good luck in your search
Rose
x
Hi Rosepetal,
Sorry I didn't mention but my daughter passed away due to complication from wd.Doctors mentioned that ITP and WD are not related,the patches would, in her case,decrease with treatment of increasing the platellets.
Regards & best wishes,
Rajesh.
Dear Mr. Rajesh Kumar,
It was very painful to know about your daughter. In fact, not you but I should be sorry for reminding you unknowingly the pain and loss you suffered. I have also gone through such loss(caused by the same reason) and thus I know. Even a slight mention or reminder of it shatters my heart and brings so much pain.
Thank you dear Rose 5 for your information and concern.
Regards and best wishes to both of you!
Rosepetal
Rosepetal,
If the patches are bruises, perhaps your doctor should reduce the cuprime to 500 mg per day. I had some bruising and that helped me to get it under control. Then I went back up to 1000 mg per day. Hope this helps, my dear.
Linda
Dear Linda,
Currently I am on Pencillamin 750 mg a day. I will discuss it my doc.
Regards!
Rosepetal
hi rosepetal and others
I was wondering the black patches you are talking about are they on specific place such your nack, shoulder elbow, buttoks. I was on penicillamine for 28 years. I had patches like on the above mentioned places. I did not consult the docs.after dew years I developed EPS a very rare side effect of Penicillamine. Doctors stopped penicillamine. But eps has not gone . Usaly it shoulld go away but in my case it has not. If you would ask your doctor she should know about this. And if she does not know you should consult a dermotologist before it gets worse. I don't want you get alarmed but better safe than sorry. Hope your doctor will helpful in the treatment. You are taking 750mg of penicillamine where as I was taking 3000mg perday thati 12 caps of 250mg each this is without consulting the docs. Thank god I do not have any other complication of penicilamine.
Dear Kalapi,
I am having patches mostly on my arms and thighs. I will discuss this with my neurologist once again. Also planning to go to a dermotologist, if needed. Thanks for your response and concern!
Best wishes!
Rosepetal
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