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Sick of it

alysa88
  • By alysa88
  • Posted February 19, 2008 at 11:55 pm · 22 replies
  • In Teen chat
  • Shared with the public
0 Recommendations

Has anyone gotten sick of taking their meds? I need help..I was diagnosed with WD when I was 13 years old and I am now 19.. When I was first diagnosed I had alot of the neurologic systems i.e. tremors, drooling, slurred speech and all that jazz. Recently I have found myself experiencing the psychological symptoms like depression, this scares me quite a bit, because I've never been depressed before, last november I even got so bad that I was suicidal. I went to a counsiler and she said that there was there was nothing she could prescribe me in the way of depression medicines, and I just had to get my copper levels under control, which is easier said than done. And also w/in the last year I have been going through periods where I just don't take my meds on account of I don't want too. bah. Has anyone else dealt w/ feelings like this? please help.

Explore topics in this discussion:

Surgery Jaundice Wilson disease Ulcerative colitis Brushing Cuprimine Depression Penicillamine Liver transplant Cystic fibrosis

22 replies

-Melissa-

I'm sorry Junebug, but you make it appear as if you're not taking any medication for WD and that might come off bad to some of the people on here. Some people might read that and think that you sound happy and healthy and she's not taking meds, so I'm not going to either. WD is fatal if medication isn't taken (chelator or Zinc). So for you to come here and say that you're "med free", I don't think thats what should be posted here, because we need to take meds to keep the WD under control or the disease is fatal.

Maybe you should clarify.

junebug23

I was a very uncooperative med taker because I was diagnosed when I was young too. I was uncompliant as the doctors say. 11 years later I had neurological symptoms so severely that I nearly died. I am not sure whether or not I caused that but I am pretty certain. Because I was older, I became strictly compliant and I am happily off all meds and symptom-free with near-normal liver panels at the age of 32. This is my hope for you. Meds suck but they're better than death.

McVeggie

hiya Linda,

I been diagnosed with WD since 1994 or 95 I forgot the exact year. Been on cuprimine ever since then. Recently, I have ask my doctor to give me Galzin. I was on 1000mg cuprimine per day initially then reduce to 750 mg per day. Taking the cuprimine has just ruined my stomache and I couldnt barely eat any food after awhile taking cuprimine. I have all neurologic systems the tremors, drooling, slurred speech as well as depression. The tremors is a lot better now. my copper level is good according to my doctor which mean what I don't know. I am thinking of changing doctor because I don't feel like my current doctor knows my condition that well. I have to research my own med to ask her to prescribe to me. Anyway, She isn't the one who diagnosed me with WD. Here is my question for you Linda don't you have the nauseate side effect on your stomache? how many mg are you taking per day? My current doctor just keep changing the side effect drugs for me she has given me at least 4 different one now. they work fine to relief the side affect for a short while. after a while they just wouldn't work anymore. Right now I take 25 mg of Galzin 1 to 1 1/2 before meal in the morning. I take my Galzin with a small piece of lunchmeat. and 500mg of cuprimine after meal at night before I goto bed. The nauseate side effect seems to have improve a lot. At least I am eating a lot more regularly now and can eat the food. As verse before I just can't hardly eat any food sometimes would even vomit everything I just ate out.

Schwebke

Alysa,

I am going to be 60 years old this year. I was diagnosed with WD when I was 24 and went through everything you describe. I happend to share a hospital bed with a patient who had Cystic Fibrosis. Do you know how many pills she took every day? Maybe 40 to 60. I don't think she made it, but I did because I TOOK MY PILLS. I have been on cuprimine for over 40 years and have lived the most incredible life. I want you to think positive, take your pills, and follow your dreams. You may write me at my schwebke@istar.ca if you wish to chat. Good luck my dear. Life is worth living and taking a few pills every day isn't a big thing.

Linda

mic

I have depression myself. I once had a week where I wanted to died but having no idea why? My doctor sent me to see a psychologist and they told me if I want I can try some drugs for depression. It the same drug for people without WD, the drug just help left up your mood. I myself dn't like taking drugs so I never try them.

James3

Hey alysa,
I too had a similar thing going with the depression. They couldnt prescribe anything for me but i didnt have many neuro problems.
I got home yesterday myself from 2 weeks in hospital with something un WD related.
Have you got any good advice?
I dont know what to tell you except hnag in there with the meds. It gets annoying i know.
Hang in there though.
James. :)

mom2six

Hi! From what I recall the first initial test they did on Crystal's 3 siblings (along w/ her cousin's) was a Serum Ceroplasma test. My son Justin's test indicated it fell into the catagory of Wilson's. On a later date we did another blood test (me included) and that's when they matched up all our DNA and confirmed who had it and which of us were carriers. From what I remember it did take a while because they had to mail it to British Columbia. That's good that your siblings don't show any symptoms. In some cases though it takes awhile. The Doctor told me in families there is a 1 in 4 chance of having it. But in our case that wasn't good enough odds considering out of the 4 kids 2 had it. Good luck! If you need more info from me, feel free to ask. I've kept notes all these years and will look up more if you want me to.

mic

Hi, I am 18 and have two younger sibling. They don't have any sign of Wd yet. The doctors won't do any test for them untill my DNA results comes back, which might take months. Is that what happen to your three children? did you needed to have crystal's DNA result first? What kind of test did the docs do?

George3

Happy Birthday Crystal,

I am so happy that you saved your brother's life. When I was diagnosed 42 years ago, they found my younger sister also had WD, & she has been taking her meds for 41 years & is doing fine.

As far as taking your meds every day, & YOU MUST---a nurse once told me---think of it as brushing your teeth---a daily chore you SHOULD do,,,,,

JUst my 3 cents worth.

Best wishes,
George

mom2six

As Crystal's Mom, I TOO am glad (and greatful!) that she is here too! Six years this past Dec. 13th was her transplant and not a day goes by that I don't thank God for my 2nd chance with her. There was a period of time she didn't want to take her meds (there were SO many of them!) but thanks God we got her back on track. It would have KILLED me if she would have died because of something she "didn't want to do anymore".

A few days after Crystal's transplant, I had my other 3 children tested for this unheard of disease. My youngest son at the time was 2 1/2 years old. The doctor didnt really feel the need to test him because he was so young. But I insisted. Thank God I did because they found out he also has Wilson's. In a round about way, Crystal saved her brothers life. If it woudn't have been for her having it we never would have known my son had it and as you know, and I know 1st hand, the early you are diagnosed the better chance for survival. What a double blessing I received!

Justin has been taking Zinc with no problems so far. Also has to add Iron drops. When you are removing so much of the copper with the zinc it also is removing iron from your body. So far so good. He,too, doesnt like taking his med's at times. Says it tastes funny but he sure is a good trooper. It's just a part of life for him now and he understands the importance of it, along with the proper diet, or he will die. As a mom, It's all so scary. I seen first hand how quickly a person can go down hill without medicine ( if only we had known sooner about crystal's condition she wouldnt have had to go through all that )and I'll do my damdest to make sure he doesnt go through what Crystal did.

One last thing, our liver specialist also said that once through transplant that person will no longer have WD. As for a partial liver transplant you'd have to ask for I'm not sure.

Happy Early 21st B-day, Crystal!

Love you!

Rose5

I agree Crystal - they would both be the same - you would be taking medications either way

- but they do say that if you can keep your old liver - you are better off trying to stick to it - but if you cant you cant ----
nature has a funny way of choosing itself whether we can save the old or get a new.. we really dont get much say in it in the end.........

Like I said I am glad that you are here to tell the tale :):)

stay safe
Rose
xx

sugarbum87

Hi Rose

Ok,so from what my doctor tells me, that once you go through a liver transplant then you no longer have WD. But as I was telling Alysa, people shouldn't think that they could stop taking their meds now to make them self sicker so they could get on the list thinking that will be the end of it. It's not. You'll still have to take immunosuppressants for the rest of your life (although there is research being conducted about possible kidneys being able to be transplanted w/out the use of the immunosuppressants, so maybe in the next couple years it'll get perfected and they can try to have it work w/ all the other organs). Anyways, I'm getting sidetracked now. So, yes, I believe that after a transplant you will no longer have WD because you have a new liver that will be able to function properly (hopefully). I know some doctors disagree, so I can see how you are getting opposing sides on it. But as I said before the specialist that I have gone to all through my adolescent post-op was somewhat an "expert" on WD and he said that I no longer have it. As for any symptoms that I may have, like the tremors and slurred speech, is from the immunosuppressants that I am on. So, as far as some symptoms go, it is a no win-win situation.
Crystal

Rose5

Welcome and great to have you in the Community x

sorry to hear what you been through but so glad to hear the hard part is all over and you are here talking to us :)
Does that mean when you have a liver transplant you are no longer WD??
We had another member in here that had a transplant but havent seen him for a while - Iain??

I hear so many different versions of once you have a liver transplant you are no longer WD so I am wondering if thats how it all works - since WD IS in the liver??

I think thats great that you are studying to become a transplant co ordinator
-- with what you have been through you would be fantastic support to the patients as much as the job itself
I hope all is going well with you

stay safe
Rose
x

sugarbum87

Hi Alyssa.

I am hoping that I might be able to help you at least a little bit. I was diagnosed w/ Wilsons when I was 14 and in 9 days will be celebrating my 21st birthday! =) Before I was diagnosed I was going through the same thing w/ the tremors, drooling (mostly in my sleep though, lol), and the slurred speech. I think the speech part was the worst & I would always say "I can't talk today" to try to cover it up... I am glad that you were able to get your diagnosis at a young enough age. Me, on the other hand, did not. As with everyone, I had it all of my life. We did not know I had it until I got EXTREMELY sick & jaundice and ended up in the ER (I was 14). I spent a weekend at a hospital in Colo Spgs, and then they transported me to The Denver Children's Hospital where this amazing specialist had previous experience w/ Wilson's & diagnosed me. Although, i was already in a coma by the time they diagnosed me with complete organ failure. I had to have an emergency liver transplant. I would have died w/out it.

I know what it's like to feel sick of taking your medicine & dealing w/ it (I don't know about the zinc & all that for wilson's, but I did feel that way after my transplant about the medicine I have to take to keep my body from rejecting my liver). I have been there. I think it is a "stage" that us young 'ens (according to my elders, lol) go through. We just want to feel "normal" again. I guess that I can help the most w/ the medicine part. I don't want to scare you into taking them, but, it is able to get your copper levels in check w/ the medicine you are in, even if it does take some dosage adjusting or switching meds & so on. Would you rather be able to control your disease, or get so sick that it is to the point that you go into liver failure and need a transplant? I am going to school to become a transplant coordinator, and let me tell ya, it can be a long wait on the list. A lot of families that I have talked to have lost their loved ones because of the wait and not enough organs to get transplanted. And after a transplant, you still have to take medicine to keep your body from rejecting it, and right after surgery you could have up to 31 pills you have to take a day.

So, I hope that I have helped in any way. I am a bit tired so I probably could have done a better job at writing this if I would've waited until the morning to write it. lol. If you would like to chat some more feel free to write me!
Crystal

-Melissa-

Hi Alysa,

I'm 25 (will be 26 in a couple weeks! :-) ) and was diagnosed about a year ago (Jan 2007). I was actually in the WD protocol through the University of Michigan and just went for my 1 year follow up. They had noted that my copper levels had significantly increased in October and they thought the Zinc wasn't working properly. I had been taking TUMS occasionally for heartburn/acid reflux and I guess that makes the zinc not work. I started on a different medication to control the acid, and they'll see if the Zinc works better now. However, my Zinc levels were fine when I was checked. So I might be one where the Zinc stops working good too. Hopefully when I do my 24 hour urine in March my copper level will be down, because I would hate to start on trientine.

The reason this is scary for me is because I had started having neurological symptoms that I didn't have before diagnosis.

I just wanted to also tell you that I think bouts of depression is normal with anyone even without WD. But if you're concerned you could maybe see if your copper levels are under control. I too have days where I'm sick of taking my meds, but I do it anyways because I don't want to die. I also had some troubles with the Zinc upsetting my stomach and then I would get in these downward spirals of feeling bad for myself for needing to take these medications.

If you ever want to chat off this website, feel free to send me an email. mjaffeldt @ hotmail.com

Hang in there,

Melissa

Rose5

Thats interesting that you mentioned that the zinc stopped working - as that has happened to a few people that I have spoken to

--its something that people maybe have to be aware of and have regular checks when you are just on the zinc as in -- have a check more often than when you are just on the chelators..

We say mainly its taking your meds but sometimes it can be something within the body that needs to be looked at....coz zinc does work differently to trientine...
Its amazing the things you learn just in talking to people and everyone sharing their experiences - makes us aware just for ourselves -- thanks x

well i am glad that you are on top of things -- stay safe and hope your having a wonderful day
hugs x

Rose

alysa88

Nope just the trientine, I was on Zinc for about four years, and then it stopped working about two years ago, we aren't sure why, my doctor thought it might be because around that time I was diagnosed w/ ulcerative colitis and was on different meds for that trying to figure out what worked so it might've interferred some how w/ the Zinc. I might be trying it again though once my levels are back to normal.
Thanx for the support =)
Alysa

Rose5

Hi Alysa x

-- I am so glad to hear you moved down with your dad - I think its good to have that support around you specially when you have those down and bad days - Good for you for taking that step :)

Thanks very much for the online support for Lauren - my daughter - she has one other person she talks to that she has met online that has been a great support as well with WD and I agree that I think that helps knowing that other people have the same issues

I am so glad to hear your back on the road and bubbly - I think we all have those days where the world gets us down - but we are here for a reason and each and everyone of us is IMPORTANT :) Never forget that xx hugs

Are you on Zinc as well or just trientine??

Keep in touch and stay safe
Your post made me smile :)
Rose
x

alysa88

I am on Trietene now..and yes I do have have family support now, I didn't have any in November, but I moved down to Cali to be w/ my dad, that seems to be helping. I used to be SO good about taking my meds..I think last year, when my world kinda fell apart I let myself fall apart too, I dunno I'm on the road back to my bubbly self again, hopefully I can keep it there. Thank you for your response, best wishes to you and your daughter. And something for your daughter too, it helped me alot when I was first diagnosed, there is a place called starbrightworld.org and its an online comminuty for children w/ chronic illness's, I think I'm the only one on there w/ WD but it helps to talk to kids that are going through similar things.

George3

Hi There,

First, welcome to this site.

Second, don't get discouraged. You have come a long way. It is very important that you take your meds faithfully.

What meds are you taking?

I was diagnosed 42 years ago, & had neurogolical systems, & fought with many side affects of penicillamine, but since I have been on zinc, 22 years now, I am doing and feeling great.

I was able to lead a rather normal life, work, get married ---a couple of times---own a home---cars---play sports, ect. Now, I am enjoying being retired at 60.

You are lucky that you were diagnosed at 13, & get all your troubles over young.

Again, you must take your meds. If you don't ---heaven or maybe "HELL" is waiting for you.

Best wishes,
George

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