A medication question

I have been doing well, first on cuprimine, and now on zinc, for about 30 years, after having been devastatingly ill for nearly 15. I am currently doing my student teaching late in life toward an elementary school teaching degree.

My question is this: I broke my kneecap into three pieces in August (dog pulled me over on a walk) and after having two screws inserted, my knee is still not right. I was advised by my orthpedic surgeon to take fish oil to help with my recovery, and to prevent serious arthritis in the future.

I currently am searching for a new W.D. doctor, as mine moved his office beyond my transportation abilities, so I have no one to ask about the advisability of fish oil for someone with WIlson's Disease. I have been taking glucosamin chondroitin since my injury, with no one to ask about that, either. No doctor will answer a question if they have not seen you in their offices.

I am abit nervous about the possibility of taking something I shouldn't. At the same time, it is so important to be mobile as a teacher. Does anyone have any information on the compatibility of fish oil or glucosamin chondroitin with Wilson's Disease? My symptoms were neurological rather than liver-related.

By Judy_Nguyen
Posted March 7, 2009 at 2:18 am
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That's a good question.... i'm a grad student, with WD... we're taught minimally on Fish oil, but the benefits of it are said/being studied... to benefit a whole host of things in your body... helps with vision, lowers cholesterol, helps decrease progression of age-related macular degeneration, helps delay onset of alzheimers and parkinsons...It's a vitamin supplement, not yet FDA approved. but no side effects have been noted, you can check out online sites like mayoclinic.com

(but considering you have more neurological symptoms than hepatological... perhaps fish oil could help? have u recently done an MRI to see if there is copper in your basal ganglia/midbrain area, being the cause of your symptoms?)

i don't know much about the other drug, just that it's the drug of choice for osteoarthritis. your orthopedic surgeon should know your medical history, so he can thoroughly evaluate your situation before Rx'ing you medicines.

Good luck, i'm sorry if I wasn't much help. please do let us know when you figure things out.

By espower
Posted March 7, 2009 at 9:57 am
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My mom is heavily into nutrition that I normally ignore. Then both my children were diagnose with WD and we wanted to do everything we could - especially for the oldest who was in liver failure. Mom recommended vit a, vit e, glucosamin and fish oil. Everyone agreed with E the hospital folk put it in her on it right after we brought it up. As for the rest, the doctor (hepatologist) said that since they didn't interfere with the meds, we should go for it. Later my mom read up on milk thistle, but he (doc) was not too keen on it so we dropped that idea.

I'm not a doctor so I can't really tell you what conflicts with what, but in essence, as long as your alternative supplements do not conflict with the real stuff (just zinc now?) then you're safe. I'm a big proponent of fish oil though. If it's just zinc you're on you should be in the clear since our children are both on it and they are on a medley of other things. If you have other meds you should be able to just ask your general practitioner to look up the meds and see if there are any problems with whatever you decide to take.

Just to be safe, even when you get the OK, you might want to take the zinc an hour or two apart from any of the other things (including the fish oil)

JudyNguyen, can't have an MRI, she has screws in her knee :)

By QueenofCopper
Posted March 7, 2009 at 10:05 am
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hey there Manickmutt
How do you Feel? hope all is goof 4 u.. i think maybe u should contact the wilson's disease association maybe they can give u a good doc's # to help u.. i also have the neurologial affects of wd i am 43 and still going strong for now.. i was currently diagnosed with a brain anurism.. So life is a challenge, i put my faith in God always!
Denise

By Manickmutt
Posted March 7, 2009 at 10:21 am
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Thanks for the info, especially about no MRI with screws in my knee. Having them is a new thing for me, and the only thing I knew so far along those lines was to tell the dentist before drilling for about the next year.

The orthopedist (who is a big shot in his area) won't research the WD concern with fish oil or gluco. I have found doctors generally rather afraid to advise on WD related questions if it is not their area of expertise. One would think he would make a phone call, for all the monry I pard him.

By espower
Posted March 7, 2009 at 10:54 am
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After my children were diagnosed this fall, all the cousins had to be checked and they all tell the same story. Docs don't want to say boo about WD if they aren't an expert. Sorry you have no one out there. Have you tried just leaving a messsage with the question on your old doctors voicemail?

Both sisters and my brother ended up calling my childrens' hepatologist who was so helpful he literally faxed the forms and instructions to their doctors so that my nephews and nieces could be tested correctly. Only my little sis live near Boston where we go, the other two are in Michigan.

For that matter, I think the whole GI team at Childrens Hospital Boston is great and might answer a very generic question like "is there any conflicts with taking zinc for WD along with fish oil". Of course you're talking to someone very biased as they've just transplanted my daughter successfully and take great care of my son.

By mom2six
Posted March 7, 2009 at 12:22 pm
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Our local pharmacist has been a wonderful resource for information. Even tho she can't prescribe herself she offers suggestions on what might work and what might interfere.

Even though your doctor has moved could you still call them and ask questions?

Good luck finding a doctor closer!

By Manickmutt
Posted March 7, 2009 at 2:55 pm
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Thanks so much for your reply. I had severe neurological symptoms many many years ago, but they have been gone for that long. I have a very slight slurring of speech still when I am very tired. Thanks especially for the idea of checking with the Mayo Clinic about fish oil.

By Manickmutt
Posted March 7, 2009 at 2:59 pm
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My idea was that possibly the fish oil would be categorized under some diet violation. I know that years ago I was not supposed to eat shellfish, which I do now occasionally. I just thought that taking fish oil on a daily basis might be a problem. My liver has always functioned fine, so I know I am one of the lucky ones.

By Manickmutt
Posted March 7, 2009 at 3:03 pm
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Thanks for the suggestion of asking the pharmacist. I tried calling Dr. Schilsky several times, but he does not respond. I get the feeling that he isn't interested now that he knows I will no longer be his patient. His new office is in Greenwich, which tips me off to the possibility that he may only be interested in paying patients.

By Manickmutt
Posted March 7, 2009 at 3:30 pm
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Hi Denise,
I just noticed that you had responded to my journal entry. I wrote you a message on your profile earlier.

I am so sorry to hear about your aneurism. Life just doesn't seem to cut some people a break.

Please feel free to write any time.

(I looked on the list of doctors on the WD website, but there are none listed near here. Also none listed in NYC (surprising!) which would be easy as there is bus service from Bethlehem.

Lorie

By JEAN2
Posted March 8, 2009 at 10:41 am
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My grandson Clay is almost 19 and was diagnosed with WD at 17. He has severe neurological presentation. He can't walk, talk, has feeding tube. I was wondering what helped your neurological symptoms so many years ago. He is already on Zinc maintenance and has had Botox for the severe dystonia and PT and ST during this time. Any help would be appreciated.

By Manickmutt
Posted March 8, 2009 at 2:43 pm
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I am happy to help however I can. I was treated at a special hospital floor, federally funded at the time, in the Bronx, by Dr. Irmin Sternliebm who since retired and passed away recently.

What helped me at first, since I was so terribly ill and loaded with copper, was daily BAL injections in the buttocks, which were quite painful, but did the trick. I think I remember that BAL stands for British Anti-Lewisite (misspelled, I'm sure). At the same time, I took large amounts of cuprimine.

Zinc won't help get anyone better if they are ill. Zinc prevents the further absorption of copper, but won't remove copper that is already there. For that I needed both the injections temporarily, and large doses of cuprimine, which must be taken on an empty stomach.

I dont' understand the use of botox- it's just putting more poison into his system. Are you sure you have a reputable doctor with expertise in Wilson's Disease? I saw about 9 neurologists before being diagnosed, and the one who diagnosed me gave me the cuprimine on a full stomach, which was completely wrong. He was so happy to have found a WD case, I think I was like a trophy on his wall.

We found Dr. Sternlieb by putting an ad in the NY Times classifieds.

Please let me know if any of this is helpful.

Lorie

By Amy4
Posted March 10, 2009 at 12:12 am
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Hey,
This is Clay's mom. I was wondering what neurological symptoms you experienced. How old were you when you were diagnosed as well. Thank you so much.

By cybo
Posted March 10, 2009 at 6:11 pm
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I am seen at UOM hospital by dr. Askari. I have been on milk thistle and fishoil. Dr Askari has no concern with them only that to make sure the fish oil is of high grade and made from fish low in merury (sardiens, bona) no salmon for that will interfer with the cuprimen. You can also just call there and ask. because im no doctor.

By Manickmutt
Posted March 10, 2009 at 8:44 pm
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Hi,

I was diagnosed in 1977 by Dr. Stanley Fahn, who was the ninth neurologist we consulted. They all thought I had a cerebellar intention tremor (which my mother has) Dr. Fahn was a very well known neurologist (at one time treated Muhammed Ali) but didn't know that cuprimine was to be taken on an empty stomach. I kept getting worse, until we found Dr. Sternlieb.

I was 22 when I was diagnosed, but my symptoms began at age 15. Those symptoms began with hand tremors, progressed to tremors in my legs during my last two years of college. At that time I also suffered from bulemia, which was a warning of Wilson's Disease approaching. I think bulemia was my way of trying to control my body, when I knew I was losing control.

By the time I was diagnosed I was unable to speak, walk, write, dress myself, and losing the ability to swallow. My face had lost expression, and I was overcome with tremors. All of these symptoms remained severe for about a year, but my struggle with Wilson's symptoms, including the psychiatric part which affects about 30% of patients, lasted about 15 years.

I hope this helps,
Lorie

By esther2k5
Posted March 18, 2009 at 6:27 am
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I did take glucosamine chondroitin for a period of time and now am taking ground flaxseed (which like fish oils has omega 3 essential fatty acids and is beneficial for joints, etc) as I have arthritic degeneration in my lower back.
I take zinc also for my wilson's and haven't had any problems with the glucosamine or the flaxseed. The main thing is to keep up the zinc or other med; that usually is enough to prevent any problems though I have to admit that, sometimes, I overindulge in high copper foods like nuts and worry that the zinc won't be enough.
Esther

By Dvora
Posted March 18, 2009 at 3:40 pm
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re: Manickmutt's post of March 7, 2009 at 3:03 pm
"... I tried calling Dr. Schilsky several times, but he does not respond. I get the feeling that he isn't interested now that he knows I will no longer be his patient. His new office is in Greenwich, which tips me off to the possibility that he may only be interested in paying patients."
----------
If that were the case, then Dr. Schilsky would have given up on me a long time ago. I haven't seen him in over 2 years (therefore he has not received money from me) and he still replies to my e-mails.

I do not know if he has yet managed to set up a NY-based clinic.

I am sorry that you and he didn't get along. I have found him to be helpful, kind, and informative.

I hope you find another closer WD doc, or figure out how to maintain a working relationship with your old doctor.

Dvora

By Manickmutt
Posted March 18, 2009 at 7:29 pm
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Hello,

Thank you for responding to me message. I saw Dr. Schilsky only once, after Dr. Nacht was killed in a biking accident.

Dr. Schilsky sent no notice that he was moving. When I found out (from another patient) and called, he kept saying that he intended to open a NYC office. When I finally gave up waiting and asked him for Pa. doctor recommendations, he emailed me a few in Phila., which I appreciated.

Since then, in August I broke my knee, and for months was unable to access my upper floor where the phone numbers were stored. I called his office three times, saying that I was unable to find the numbers. I spoke to his secretary who was very sweet and promised to speak to him and call me back. To this day I have not heard from him.

I have no trouble getting along with people. Dr. Sternlieb and I had a great relationship, as did I with Dr. Nacht.

For 18 years I ran my own business. If I had neglected to return calls, as did Dr. Schilsky's office, I would have lost clients. Dr. Schilsky was a tremendous disappointment to me.

Lorie

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