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I was recently diagnosed with WD. I was prescribed syprine (trientine) 3 times a day. My doctor mentioned being on that 1-2 years then switching to zinc acetate. I was diagnosed before symptoms showed up thanks to a routine blood test. My liver biopsy was high at 767. I was wondering how long others took de-coppering meds before they were switched to zinc acetate. Thank you for any feedback.
Anxiety Cancer Zinc acetate Wilson disease Insomnia Syprine Penicillamine
Hi Stacy,
My son has been on syprine and zinc for over two years. We are hoping the 24 hour copper test just taken will come back clean. He saw a new neurolgist a couple of months ago and he increased the zinc to 750 mg a day to finally clean up the blood. He also had no symptoms at the time of the diagnosis but has since had drooliing and speech problems which they say will get better once the cooper is gone from the blood. He will be 20 next month and is in his 3rd semester in college and he has a great attitude toward life. I hope you find all the answers in this web site as it was a Godsend to us.
Hi Stacey,
I was diagnosed at the age of 53 (I'm now 58) - I had speech and gait problems along with trembling in the hands, head, and legs - The first 3 years I took 6 syprine a day plus 3 zinc (150 mg total). Almost all of the symptoms are gone now except for occasional trembling in one hand (nothing important at all now) - but to answer your question, right now I'm down to 1 syprine (trientine) a day plus 3 zinc. That's the way it's been for the past year and half. I also try to keep a low copper diet as much as I can, with only a few slips now and then. Since you showed no symptoms at the beginning your doctor is quite right when saying it would only take 1-2 years. The only difference is that I have always been on zinc from the very beginning along with the syprine. . Good luck and I'm sure you're going to be fine in no time at all - a positive outlook is essential.
Thank you for your response. Sounds like your son is doing much better. How did he find out he had WD since he also had no symptoms? It seems like there are so many levels to this disease.
Also, does your son take any vitamins along with his medicine? I'm the first patient my dr. has seen with Wilson's and he does not seem to be familiar with it. When I asked him about taking a multi-vitamin he said sure, but when I asked about most multi-vitamins having copper in them he changed his mind and said I'd better not.
Nemo,
I will ask my dr. about being on zinc as well at my next appointment- as I've stated I'm his first WD patient, so I feel like I'm learning about this disease off the web & others experiences instead of from him.
Stacy,
The syprine is used to pull the copper out of the blood and the zinc blocks any zinc that may be in your food and water. As we have learned more about this disease you should be on the zinc also. We also had problems finding a doctor that knew anything about wilson's. Chad was playing football and was being scouted by several colleges and needed a extensive physical. That doctor noticed his platelet count was low and it snowballed from there. We were sent to a cancer doctor because that thought it was cancer. But grateful it was not, but out of that were lucky that our doctor who was willing to help us find out what. I searched the web until I came across Wilson's and here ordered a biopsy that was then sent to the Mayo Clinic and the rest is still playing out. Our gastro doctor here was willing to learn all he could about the disease and then refered us to our neurologist who with Chad now has 3 patients. We fill like for the first time someone knows what they are talking about. It makes a big difference. Try to get your doctor to brush up on Wilsons or be a very active patient.
Good luck and always no there are others here to listen.
Does chad take over the counter zinc or Galzin? Thank you so much for your posts =)
He takes 50mg of the gluconate otc. We were unable to find the acetate, but he tolerates it find. Galzin was much to expensive when the otc works just as good for him.
Hi Stacey,
My doctor here in Turkey is a prof. in gastroenterology and hepatalogy and has over 30 WD patients. Because this disease afflicts those of Balkan origin or Eastern Europeans (mostly that is), there are quite a few sufferers here - although treatment drugs still only come from the U.S. and England (except for zinc). Through this website, though, I learned of a book by a reknown WD specialist Dr. George J. Brewer and people in this site highly praise the book and that they've learned a lot through it. I have also asked a cousin living in the U.S. to bring it to me next time he comes over. The pariculars are:
author: George J. Brewer (MD)
title: Wilson's Disease for the Patient and Family - A patient's guide to Wilson's Disease and frequently asked questions about copper
Publisher: Xlibris first published Apr. 2002
ISBN - 13: 9781401029043
As for vitamins, my doctor only recommends taking vitamin E every other day - all others have copper, even a scant amount. In fact I can't even take Glocosamine because of the shellfish content.
I wish you the best - at the end of the day I think it's best to learn as much about the disease as possible and become our own doctors (so as to "double-check" our own doctor, not to give him/her up). I hope this information helps. I know I was desperate at first.
many store brand multivitamins do not contain copper...like cvs(pharmacy) zinc also chelates iron and some b vitamins...so a multivitamin is wise.
Hi -
I was diagnosed 12 years ago and I am now 30. The meds I was on (penicillamine) were too harsh so I have been off of them for at least 5-7 years now.
It's quite frustrating to have to tell your doctor about your disease and watch them pretend to know what their doing when they really don't and wont ask for help because they are too concerned about their own ego. You can say i am stereotyping physicians but I have not found now one Dr. in my 12 year search that has taken proper proceedings with the disease (testing for cooper levels urine copper levels, biopsy etc...) My most recent Dr. tested for copper levels in my blood and said that a 24 hr copper urine "was not necessary" when I am sure it is since I haven't had one done in about 2 years. My blood copper levels came back 19 mcg/dl but I am not sure what that means.
I write this in hopes that someone can share their experience of their phenomenal doctor and hopefully recommend me to someone like them. I know the wilson's disease association has dr. referrals but I would be interested in hearing if any of you have visited them.
While I don't suffer from extreme symptoms I sometimes have anxiety attacks, my brain thinks alot faster than my speech and I experience tremors from time to time. I self medicate with what the state of California offers to treat these symptoms. And while this treats my insomnia and panic attacks, I would like to start treatment so that I can attack the disease not just its symptoms. Overall I am 30 and healthy...I would just like to keep it that way.
Your insight would be greatly appreciated.
God Bless.
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