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meds 1-3 hrs before or after eating important?

mic
  • By mic
  • Posted March 7, 2008 at 11:48 am · 21 replies
  • In Newly diagnosed
  • Shared with the public
0 Recommendations

Is it truly important to take meds 11-3 hrs before or after eating?

Explore topics in this discussion:

Kidney transplant Zinc acetate Wilson disease Incontinence Peptic ulcer Dialysis Pain Syprine Cuprimine Liver transplant Penicillamine Depen Stress

21 replies

Dvora

Yes. But it's 1 hour before, 2 hours after.

The 1 hour before allows the med to be absorbed before food is introduced into the system.

Not sure how the chemistry works, but if I remember correctly, about 2 hours for food to start digesting, so by then the medicine has a chance to be absorbed.

You didn't mention which drug you are taking, but some people who take zinc find it easier to eat breakfast and take the zinc 2 hours later because the zinc sometimes irritates if taken first thing in the morning.

esther2k5

It is absolutely essential that you take whatever med for wilson's one hour before eating or 2 or more hours after eating--otherwise, the medication will not be absorbed properly. I know it's a pain but the meds won't be effective unless you follow the rules of taking it on an empty stomach.
Believe me, I know that a lot of non-compliance issues are around taking the meds properly. What I do is take it first thing in the morning and then after an hour have something to eat and take it 2 hours after lunch or dinner. It becomes habit after a while.

George3

Hi Esther,

You are just new to this community butI applaud you for your comments; especially your messages to the depressed man.

I was in Dr Brewer's study to pass Galzin for 11 years, & then he said at leeast an hour between meals. I do like you do, take my Wilson's med when I wake up, & then wait one hour before I eat. Then I take my second zinc before I go to bed, making sure I didn't have a bedtime snack one hour before. My 24 urine & blood work, which I have checked every six months are always good.

I was diagnosed 42 years ago, & I am not sure if you go on the other WDA discusion group or not, but Fran, who has been taking her meds since she was 8 years old, suddenly needs a liver transplant.. I have known several other WD patients that have needed liver transplants after years of being on their meds too. Kind oif makes me wonder where I stand.

Keep up the great work, Esther.

Have a great day.

A long time WD survivor,
George

mom2six

George, Just wanted to tell you how encouraged I feel knowing that you have been a "Wilson's survivor" for 42 years! My son, who is now 8, was diagnosed when he was 2 1/2 years old and has been on Zinc ever since. (He will soon be switching to Galzin 3x a day). I used to stress over this so much I'd practically lose sleep wondering how long his life spam would be. Hearing that you have dealt with it and I assume no major problems with it will help me sleep better knowing my son has a chance at a long, basically healthy life too. Good luck and may God continue to keep you healthy!

Quick question: Is there much difference between liquid Zinc and Galzin?

George3

Hi There,

Thanks for your message.

It must be difficult for an 8 year old to take medication & I can't imagine the difficulties that you had when he was 21/2. You are another SUPER amazing Mum.

Galzin is Zinc Acetate. Dr Brewer did a study at the University of Michigan, in Ann Arbor to get zinc acetate passed for WD, He did research from 1979 to 1997. I was a part of his research study from 1986 to 1997. I would spent 2 week periods there twice a year. Dr Brewer would have some of us take high does of different vitamins before our visits then see how the zinc acetate would be affected. He had me & others take one zinc a day, instead of the usual 3 for a few months before my visit & see if it did the same job as 3 zinc. When we were there, we would eat the same food there everyday for 12 days, & measure the amoumt of copper by saving our urine & our stool, & make sure the same or more copper wouold come out of our bodies, as we were taking in. It sounds bad, but we could pick foods that we liked. We did many other tests when we were there too, but we could leave the hospital, as long as we didn't have tests scheduled. It was like a holiday, plus every thing was paid for, except our fair to get there.

I have never taken liquid zinc, but as long as it contains 25 or 50 mgs of elemental zinc, it sould be OK. Galzin is expensive to buy, & so many of us are taking OTC(over the counter) zinc. I am taking Zinc Gluconate from Walmart.

If you have any more questions or just want to talk you can e-mail me at georgefeldmann@yahoo.ca at any time. No question is silly.

I have a younger sister, Jeanne who was diagnosed in 1967, at 11 years old & has been taking Depen or Penicillamine for 41 years also, & is also doing ok.

I have some questions for you now. How was your son diagnosed so young? Where do you live? What is your name? Do you write the other discussion group?

Take care & keep up the GREAT work.

Your friend,
George

esther2k5

Many thanks for the kind words--in the nearly 30 years since I was first diagnosed with wilson's (while asymptomatic) I've been through enough experiences that I felt I had something to offer in this forum; though I don't need support per se, it is nice to share with others who have this rare disease.

I used to take trientine which I thought to be the best med around but had to stop taking it because, unfortunately, it was prohibitively expensive (as an orphan drug and not in the formulary) and like yourself have been taking zinc gluconate (100 mg 2x a day in capsule form (from swansonvitamins.com) which in my opinion is much better than tablets that may not break down properly--though I am considering switching to zinc picolinate (a little more expensive) as I understand it is absorbed better than zinc gluconate. I am also considering adding carnosine (a supplement) to my regime which I understand to have excellent copper chelating properties but would have to take it separately from the zinc as I don't want the zinc to be chelated.

I found out on my own--and not through any doctor--about zinc treatment of wilson's while I was still on penicillamine which was always first prescribed around the time I was diagnosed (the late 70's). I remember being shocked to find out that zinc sulfate, apparently, had been used successfully in Europe for a number of years. I switched to zince over 20 years ago on my own, but, because I had never had wd symptoms I was very lax about taking the zinc until I started having bizarre neurological symptoms (falling, and balance problems, slurred speech, incontinence) and I finally realized that they were symptoms of the wilson's, Then I researched and requested trientine which reversed all the neuro symptoms very quickly (in less than a month)and certainly after that wake up call, I took my disease seriously and took the trientine regularly until last year.

So far, so good with the zinc gluconate and I really do consider myself most fortunate to have a genetic disease that a number of effective treatments--I consider myself blessed with excellent health and vitality and do not worry about my wilson's or the future because I take my zinc daily.

As for offering good advice, it came with the price tag of experience..,and also from doing my own research and evaluation.

Happy to share,
Esther

mom2six

Hi George! Thanks so much for responding to my post. Earlier I had typed a long post but my computer had froze and I lost it all. ( So now I am trying to remember everything I wrote. I’m sure the first go round was a lot better then I will write now.

In the beginning of giving Justin his medicine at such a young age was harder on me then on him. He would say it tasted good. He used to laugh as they stuck his arm with the needle for labs every month. I would cry inside for him. He has done very well with the 2 liver biopsy he’s had too. I was so stressed and worried so much about making sure I gave him his Zinc and Ferrious Sulfate at the precise time every day. Watched everything he ate. For him it began as just a part of his life. Like breathing and eating. Holidays. such as Easter and Halloween, were hard. While trick or treating with his big baby blues he would inform the houses “I can’t eat chocolate.“ Now he’s learned to just say “Thank you” and give it to one of his siblings (or Mommy!). Even his baby sister (she’s 3) would say “Justin can’t have chocolate” when we attend birthday parties, etc. It’s sad. But he keeps his spirits high. In a way I think it was better to start at such an earlier age because he doesn’t mind doing without some things since he doesn’t really know what he’s missing.

That is so wonderful, for lack of better words, that you became part of history in helping other Wilson patients!!! My oldest daughter Crystal (more on that in a bit) was also in a clinical study. Not so much for the medicine part but for the actual disease. That is so great that your sister is doing so well after all these years too! Have either of you had set back at any time? Any symptoms, etc.

As for how we found out Justin has Wilson’s. … In 2001 Crystal, age 14, became sick. On Friday Dec 7th she was “ok” and went to school. By the time she came home she wasn’t feeling well. She hadn’t felt good for about a month or so prior. Very depressed (took her to a therapist who wanted to just prescribe her anti-depressants. I said no. I just knew in my mommy gut that something else was wrong--thanks God I listened to myself or she’d be dead) She came into the kitchen while I was making supper. Her eyes were yellow and hurt. I told her to go wash off her glitter make up thinking that it was some irritant. She came back into the kitchen and that’s when my husband noticed the back of her neck was bright yellow. I took her to the ER. They said I could either go home and come back in the morning for a biopsy or stay the night. I chose to stay. Thank God we did because she became very ill quickly. Throwing up, in constant pain on her side, turning more and more yellow. No one could figure out what was wrong. Thank God her pediatrician called Denver’s Children Hospital and talked to the liver specialist who thought Wilson’s. By Monday Crystal was rushed by ambulance there. We followed. By the time we arrived (we live in Colorado Springs, 86 miles away) she was in worse shape. The last words she spoke to me for 4 or 5 days was “It was a bumpy ride” I hung onto those words like Gold.

Anyways, she went into complete organ failure. Her heart and spleen enlarged, her kidneys failed, her lungs collapsed, and of course her liver was failed. They wanted to put her on the list for kidney transplant too. I said “No, I want to wait a bit” Thank God, thru dialysis they became ok. The transplant coordinator took me into a room and told me, my husband and my friend that she had 12-24 hours to live. Do I want to talk a Priest?? I went numb. I felt like I was living a movie or better yet a nightmare. After her transplant they let us see the liver. It was the ugliest thing I had ever seen. It was dark green and bumpy like a frogs skin. I became so angry that that slap of green crap was what almost killed me daughter! Or was killing her. Sounds funny, but I wanted to punch it!

To jump ahead a few weeks (she was there until first part of Feb. 2002, I stayed at Ronald McDonald house, the other 3 stayed at my folk's and a friends house since they werent allowed there.) I had my other 3 children tested for Wilson’s. My other son and daughter are carriers. I since have had 2 more daughters who have not been tested since they have a different father . At first the Dr. felt no need to test Justin since he was so young and usually Wilson’s don’t show up until age 10 or there after. I insisted. Thank God or who knows if he would be alive or go through what Crystal did….I have lost many sleepless nights worrying about that.

I don’t usually write on any other web sites since I’m not sure where any are! Lol After Crystal’s transplant I did try to start a book with pictures we took of her at the hospital and how yellow she became, my memories of it all, etc. More for theraputic and to help Crystal understand what all she went through since she was in a coma and very “out of it” from medication and such afterwards. There’s more to it all, of course, but I know I posted way too much as is. Sorry everyone!
My email is Jim2Chel@aol.com

George3

Hi Esther,

Thank you for your message & sharing the swanson site where you get your zinc & telling me about carnosine. Is this in health food stores or where would you buy it?

You have taken care of yourself very well. Great job. I am smiling here.

Some people from the other discussion group would be interested in reading nmore about the carnosine. Do you mind if I share it with them?

Do you ever do 24 urine tests or have your copper & zinc levels checked? I would be interested. My zinc is only 50 MG per tab.

What state are you in?

Take care & have a great weekend.

Your friend,
George

esther2k5

Hi George -
I do have my copper levels tested yearly though I've never checked on zinc levels and it has never been suggested before though I may suggest it when I next have my tests done. In regards to 24 hour urine tests, with zinc treatment, copper is excreted much more in the stool than in the urine so the 24 hour urine tests are really unnecessary--I haven't had my urine tested in several years and my doctor has only been concerned with blood work.

As for the carnosine (an amino acid), you can get that at swansonvitamins.com as well as the zinc gluconate (in 50 mg capsules as well) at a better price than most health food stores and it has a flat shipping rate of $4.95. Vitacost.com also has excellent prices for supplements and the same flat $4.95 shipping cost.

I haven't yet gotten the carnosine but will eventually. As far I'm concerned, it can't hurt as long as I take it separately from the zinc.

Esther (from Massachusetts)

esther2k5

Hi George -
I forgot to mention this in my previous post--feel free to bring up carnosine within your other wd group.
Esther

mom2six

I have a questions....
Lately I have been reading on here that there are so many different names for Zinc...zinc acetate, zinc sulfate, zinc gluconate....is there really that big of a difference in all of them? If so why are some people on one kind and some people on others? Don't they all work to eliminate the copper out of the liver?

kalapi

hi mom2six
I take zinc sulfate for my WD with Trientine. I think there is not much difference in the form of Zinc you take. Zinc being metal it is toxic for the stomach. you may get ulcers. so depending upon your tolorence your doctor should decide which in which form you should take your zinc. Out of three zinc preparation the acetate may cause asdic reaction in the stomach most where as gluconate may cause the least. i had peptic ulcer in past so my doc may have decided on zinc sulfate or as I come from Europe Zinc sulfate is prefered due to the cost of zinc acetate. How ever I have appointment with my Liver specialist on April 28 at UMDNJ NEWARK New Jersey. I will ask him about the differece

worriedmom

George,

My son just diagnosed to have WD a week ago. I am very worried. I bought Dr. Brewer's two books, one for patient and family and one for professionals. According to his research/treatment, none of his patient had completely liver damage. It seems as long as the patient take the medicine, it'll be fine. The patient he found had real problems are the ones who did not keep taking their medication. You mentioned that many WD patient need liver transplant, what is the reason of it? I am nervous after reading this. However, I am glad to see you have been fine for the past many years.

To other viewers, reading Dr. Brewer's book is very encouraging. He sees to have most updated info to us. reading other website made me nervous. Since my child was just diagnosed, I did not know anything about WD a week ago, other website made me very scared and depressed. We are lucky to have Dr. Brewer did research in WD area for more than 25 years. It seems his research group is the only research group studied WD in detail in the whole world. I highly recommand his books to viewers here.

I also have a question. Can my child have any snack after the medicine? He is on Galzin. pretty soon, he'll be on it three times a day. He may have to take one while he is in school (5th grade). As a mom, my heart is broken. I blame myself give him this disease. Lucky he is diagnosed quite early. He hasn't have much symptom, except elevated liver function, mild tic.

I will read more on this site. I hope to exchange info here and we can support each other.

collegemom

Hi worried mom!

My youngest daughter (five) is the one that had the symptons and we first found out about the disease. My oldest (eleven) just got diagnosed too. She still has to have the biopsy and more bloodwork. She is in fifth grade also. Just thought I would say that we both have kids in fifth grade. This has been such a hard year for her as far as girls and fitting in. She is at the top of her grade and I just found out that some of the girls find her smarts intimidating (go figure)! Anyway I know you have a boy and it may be easier becasue boys aren't so critical.

Hope to talk to you more.
Bobbi

mom2six

Hang in there Worried Mom!!! I It doesnt feel that long ago when I was in your shoes and could have also had your screen name!

I also have 2 children who has/had Wilson's. My oldest daughter recieved a transplant...long story...and my son who is 8 1/2 years old has WD. He is in the 3rd grade. He was diagnosed at age 2 1/2, thanks to his sister who had WD. He currently takes Galzin 3x a day. I give him 1 in the AM before school..the 2nd in the after noon around 2:30...the time he gets out. He has his snack around 3:30. We eat dinner around 5, he takes his Iron pill w/ his meal. Then the last Galzin before bed. It will get easier as time goes by to work out a system best for you.

I worried my self sick when all this WD was so new to me! Sometimes I still worry alot, but I've learned to not freak out so much over the small stuff. As loong as your boy keeps on track with his meds, go to the doctor appointments, watch the diet a bit, everything will work out. This board is a wonderful place to be! There are so many knowledgeable people (George F. for example!)

I also felt guilty for so many years! Sometimes I still do. But i've learned I have to let go of that. It's just the luck of the draw I guess. Nothing we could have done differently while pg. We didn't give our children this disease on purpose. Now, if we didn't help our children now that we KNOW they have this disease, then maybe we would have something to feel guilty about. But since that isn't the case...and I know you must be a caring, and loving mother because you came here for support! Thats all you can do.

Like I said, hang in there! It will get much easier as time goes by! Trust me.

garypop

Dear Kalapi

My wife has Wilson disease and we Live in New jeresy, We use to see Dr schilsky but he moved to Yale CT. Which doctor do you see in Newark NJ

Gary

kalapi

dear garypop
The Dr at UMDNJ is Dr Carroll Leevy. He is liver specialist at UMBNJ Newark. If Your wife has Neurological symptoms the Dr at UmDnj is Prof Hillen Machteld. She is Director of Adult Neurology clinic. If you need their telephones let me know. Hope your wife will find these doctors helpful. I regularly go to them. good luck

mac2

My daughter, 26yrs old was diagnosed w/o any symptoms other than elevated liver enzymes in april 2008. I was a nervous wreck. I went online and a lot of the bad stuff stayed in my head.
Just remember, the hard part is over. Getting the diagnosis. As long as your son takes his medicine he will be healthy like all the other kids. Problems arise when people stop taking the medicine because they feel fine.
My daughter takes her medicine, no longer drinks alcohol, (hard for someone her age) and stays away from the high copper food. ie shell fish, chocolate, liver (no biggie)
There is a food list on the wda website that shows copper content for each food. i try not to get too crazy about it but it is good just to know.
your son will be great, just make sure he takes the medicine. good luck even though you don't need it

McVeggie

question has trientine been an approved drug in USA for a long time? I asked my doctor to give me that drug she goes she checked her newest 2008 drug book and those book doesn't have anything on trientine. So, she wouldn't prescribe it to me. She then proceed to giving me a letturce on how I shouldn't believe everything I find on the website about my condition after all you guys aren't the professional, and she is. She knows what's best for me. I am trying to minimized my intake of meds. I don't want to take more drugs to cure the side effect of cupprime. She just want to give me more drugs and change it when it doesn't work anymore. The last one she gave me will make me sleepy. I flat refused to take that as I have to work during the day. I think I trusted you guys on here more then my own doctor after all you are either all the suviors of family that has WD or has WD yourself. Everyone here is speaking from experience.

esther2k5

Your doctor sounds ignorant, quite frankly, if she cannot find out anything about trientine which has been approved for wilson's for many years and which I used to take regularly with great results--the only reason I no longer take it is that I cannot afford it as it is not a formulary drug and it's very expensive so I've been on zinc gluconate for maintenance with very good results as I was already decoppered by the trientine (syprine).
If I were you I would look for another doctor who is more knowledgeable and not threatened by your quest for a better treatment for your wilson's.

Send her these links on trientine: http://www.drugs.com/ppa/trientine-hydrochloride.html
http://www.mayoclinic.com/health/drug-information/DR601373
http://www.medscape.com/druginfo/dosage?drugid=8855&drugname=Trientine+Oral &monotype=default

Good luck and I hope you get off the cuprimine and onto syprine (trientine) very soon. Let me know what happens.

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