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Wilsons disease

beechmom
0 Recommendations

Our oldest son 28 now has been not improving at all,what are we to do? The doctors told us with time and zinc he would get better. I have seen nothing but his body getting worse like he had a stroke,sleeping lots,speech prblems with drooling and swallowing problems and choking. There are also days where I dont think his brain is working properly. We live in Canada and the cuprimine didnt work and now the zinc isnt working,is ther anything that will work? Its killing our whole family and I also have 2 more boys who have wilsons disease.

Explore topics in this discussion:

Wilson disease Syprine Cuprimine Penicillamine

13 replies

RICHA

Dear Beechmom,

WD's medicines usually take some time to work. In my case improvement started showing after 6-8 months of the begining of treatment. Be patient and keep consulting the Doctors.
Regards and best wishes!

Richa

RICHA

Dear Beechmom,

WD's medicines usually take some time to work. In my case improvement started showing after 6-8 months of the begining of treatment. Be patient and keep consulting the Doctors.
Regards and best wishes!

Richa

Brennie

Dear Richa, my son has been on Trientine for 10 months. His doc was not happy with his progress which has stalled this last while. He changed him back to D-Pen ,which is stronger, last week and we have noticed little improvements already. Fingers crossed he will have no bad side effects. He also had a course of Dimercaprol ( BAL ) some months ago. Its a booster and helped. He has gone through bad spells as well , it seems part of this horrible disease. Is your son taking the meds the right way ? thats important. very best wishes for your family

JersMom

Jeremy has been on Trientine (Syprine) since August 2008...within 6 months improvements started. Currently we have Stalled as Brennie put it. We are in Canada and your Docs can make arrangements to have Trientine brought into Canada! He was originally on copramine and was taken off due to side effects. Canada is behind in the times and we must fight harder and consistently! Jeremy still has a feeding tube...occassionaly he can eat pretty well, but, not always. He can only eat pureed foods. He still drools and speach problems. Currently he is really struggling with speach and eating? Talk to the docs about Trientine.

Brennie, I am curious; would there not be still side effects with using d-pen again?

JersMom

I forgot, where in Canada are you Beechmom? I am in Kelowna, BC

Gregor

Hi
I have just joined up and I really relate to your frustration! I live in New Zealand and while I cannot complain about the public health system as such - I find the specialist I am seeing only lives by "the book". I wish he would look into the lives and experiences of WD patients - he could learn a lot!
I started taking Pen D and zinc early this year - but two months ago a routine blood test revealed that Pen D was destroying my blood platelets at a most alarming rate! There is a name for this condition, just cant think of it right now. Then the frustrating process of obtaining a govt funding for Trientene started. The specialist was pretty good about filling in all the forms etc and then we waited and waited. so for more than 2 months I was just taking zinc. Being off the D-Pen didnt seem to have an extremely adverse affect - only that my tremors got really bad, especially when tired or distressed. I experienced a few panic attacks too. some days my wife thinks I've lost a marble or two - but I still hold down my job (she thinks I am very brave, by the way) as a welder - which as you can imagine is quite a challenge!
BTW - my wife read somewhere that stopping and then re-starting Pen-D is not such a good thing - but you better research that yourself.
I have been on Trientene for two days now - and I definitely am experiencing more tremors - which is rather disconcerting. But maybe that is just because the medication has to settle in my system? Who knows what these horrendous chemicals are doing to us?????
I wish you all the best in finding a good doctor and decent meds!
By the way my wife is my scribe - If I had to type this, I'd still be here in 2010! (Joke)

Brennie

Hi Jersmum , not so far ... but it's only been a week. He is in Rehab trying to dodge therapies, still expecting miracles to happen. It's very frustrating. Lat time he was on Pen a year ago his white blood cell count fell so they changed him to Trientine. The UK doc said he would have persisted for longer to get the copper out. We are back there now.

coppertop

I was on TM(tetrathiomalybdate) in 1991 at the university of michigan...i had severe migraines, hand tremors, rages, sleeping ALL the time...i improved within weeks...check to see if TM is available...or a fast decoppering agent like it...i took it in conjunction with galzin 3 times per day...

beechmom

Yes we are in Sask Canada. our drs in winnipeg diagonosed our sons 15 yrs ago and still not getting better. we have talked to dr brewer in the states who swears by zinc but he has been on that for 3 yrs and still no inprovement.is it possible that he might be 1 that none of the meds will work. in the past before the zinc he was on cuprimine and noe we are going to saskatoon in nov to try the trientine

beechmom

I did hear that this new drug TM was really good but yet not availalbe yet in Canada but in the states is still was not approved and only on the black market ,is this true

coppertop

I believe I was guinea pig #11 on TM...I did not realize it was not approved yet...I remember that Dr. Brewer said you need to also get rid of existing copper...zinc only prevents more absorption...Molybdenum is also a decoppering agent and available at online pharmacys without script...it could be administered in conjunction with zinc...be careful to supplement his iron and b vitamins as it also chelates those. I was self diagnosed as I was a nosy kid with stupid physicians all my early life. Hate to be so blunt, but I would be dead if I listened to any physicians before Brewer...my advise is not that of a medical doctor..just a wd survivor.

Skyemanator

I had no idea there were "so many" of us! I was diagnosed in 1980 by a neurologist fresh out of school. Thank God! BUT - this is to low platelet guy - I had a very low platelet count and my spleen went "bad" and was removed before WD diagnosis. I'd not heard that D-penicillamine lowered platelets, and your spleen may be doing what mine did. I will drop you a private note just in case you don't come back here soon.

Here's the really fun part of my life: I was diagnosed with MS in 1996 on top of the WD!

And why is this site "Wilson disease," and not "Wilson's?" And Mr. Wilson can have his disease!

8-)

Skyemanator

Oh yeah, I got much worse before I got better. Back "in the day" there was only penicillamine for treatment. I was taken off it and put back on. Dr. got me up 2 grams a day before any improvement, and I spent nine months with a gastrostomy tube, extremities flapping!

I was 23 at the time. 29 years ago. My how time flies!

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