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Taking Syprine & Zinc

chadsmom
0 Recommendations

Can you take syprine and zinc together and both work

Explore topics in this discussion:

Cancer Wilson disease Syprine Dystonia Speech therapy Penicillamine

22 replies

worriedmom

Did you guys read any of Dr. Brewer'x books on Wilson Disease? Why is your boy still on Syprine if he is neurologically presented?? They suggest Syprine for at most 4 to 6 months for patients with Hepatic presentation. For your cases, galzin should be long due. Your son needs to control the copper in the blood, not to release it from storage into the blood which is what Trientine does.

I am not a Dr. But I read all the papers I could find as a scientist on the subject. It seems you son should be on galzin now if he is not having a heptatic failture now.

jayant

Thanks Heron,

I will meet concerned doctor in the month of Sept.09. I will ask him about taking Syprine (trientine) instead of d-pen. Availability of Syprine (trientine) in India needs to be confirmed.
Here in India, there are very limited number of Clinical laboratories available where 24-hr copper test is carried. & we have to rely on them.
Is there any other alternative test?

Thanks,

Jayant

Heron

Are you saying that she was taking one 200 mg tab of Zinfate, containing 50 mg of elemental zinc, only once a day, in other words a total of 50 mg of zinc once a day? That would not usually be enough. On the other hand, if her urine copper is normal, I don't know ...
Is there any possibility that you could get Syprine (trientine) rather than Penicillamine? For most patients, Syprine is less likely to make neurological symptoms worse.

kalapi

dear Jayant
I understand your concern. But there should not be any problem in starting D-pen again. Only you will have to see if it works in getting rid of Copper as before or not. D-pen some time causes neurological deterioration in the patient. I am sure your docs may have considered this and then started D Pen again. D pen is the best treatment if one is able to take without any complication. I had taken it for 28 years without any major probs. How ever it may be best for your daughter to take in the begining to stop the copper going in the brain. We all here are patients and not experts though we contribute towards helping others know more about WD and find other options to the treatment. I know you may have the best possible docs available for your daughter. They are the best persons to ask. How ever as more research is going on sometimes the docs are not aware of new things at that time you can tell them about new research. hope your daughter gets back to normal as soon as possible.

jayant

Thanks Heron,
24-hr urine test is done after every three months. The results, since Oct 2005, are varying between 41 to 60mcg/24hr i.e. within normal (15-60mcg/24hr) range but close to higher limit. Test report in last month was 57mcg/24hr. My daughter had performed well in her studies till June 08. D-pen is stopped in June08. However, since last few months, the hand-writing (Quality & speed), speech is deteriorated.
Presently my daughter is taking ‘Zinfate-200mg tab’ per day, &
Benadon-40mg tab (Pyridoxine Hydrochloride) --- ½ Tab per day.
Artamin-250mg (D-pen) – 1 capsule per day is started again ,since last week.

Zinfate i.e. Zinc in the form of ‘Zinc Sulphate’ contains approximately 50 mg of elemental zinc.

Is there any harm to repeat Artamine (D-Penicillamine) once it was stopped?

Heron

Welcome to this website Jaynant!
I am sorry your daughter is having problems. I am not a doctor, but I suspect she might not have been on the right dose of zinc. The standard is 100-150 mg per day, in 2 or 3 doses of 50 mg each. It has to be 50 mg of elemental zinc.
Has her doctor been monitoring the levels of copper in her urine and blood? This should be done at least once a year, and could tell you whether the problem is that copper has gotten too high, or something else.

jayant

Friends
I am from India and my daughter is with WD since Oct 2000. D-Penicillamine (Artamine) was started in Oct 2000 & was continued till June 2008. The tests viz.-24 Hr Urinary copper, SGOT, SOPT, etc carried-out every month & were satisfactory. The test results of 24 Hr Urinary copper were within normal range. Artamine (D-Penicillamine) was stopped in June 2008. Benadon 1/2 Tab + Zinfate 1 Tab per Day continued. During this period she had done well in her academic study.

However it is noticed, since last few months, that the hand-writing (Quality & speed) is deteriorated, difficulty in speaking is also observed. We consulted doctor June 09. The MRI of the Brain is preformed in last week & imaging findings are consistent with W.D. Therefore Artamine (D-Penicillamine)-250mg per day is again started from June 09 (i.e. after 1 year’s gap). I hope this will improve my daughter’s performance.

Even though the 24-hr urine test results are within normal limits why the copper is accumulated in Brain? Is there any other reason?

Whether anyone had gone through such experience?

Is another test available to ascertain the accumulation of copper in Brain?

Kindly Inform.
Jayant

kalapi

dear lindy
Thank you for your comment. I have been on zinc since 1996. I have never been low in iorn. When I was put on syprine in 1997 as my copper level shot up my iorn level droped and Docs had to stop syprine. After few months my iron was normal without any supplement of iorn. Now again after starting syprine has cuased Iorn to drop. You may be right that Zinc causes iorn to drop. But it may differ from person to person as it has in my case.. If you check instruction which comes with syprine it tells you that medication (Syprine)may cause iorn deficiency in some cases. I have not checked my urine copper but I am going to ask my doc to carry out this test when I go see him on July 6. thanks for you suggestion of 24 urine test. i have taken max dose D- pen 3000mg per day. That too in 2 equal dose. This was prior to 1996. I even don't remember for how long I took this dose. If i remember I think out of 28 years while on D- pen I might have been on 3000mg about 20 years. This was when I was in India. I was stupid to take this kind of dose without consulting a proper doc. But I was child and at that time as my symptoms got worse i use to increase my dose of D-pen. I am a lucky person not have my organs damaged due to this. Though I have a very rare side effect on my skin called EPS (ELASTOSIS PERFORANS SERPIGINOSUM). only 1%of patient taking Dpen develops this condition. After stopping D-Penn it disapears but in my case it has never stopped but sloly prograssed. There is no medication for this condition. Atleast I don't have come across.. I have seen worlds best Dermatologist when I was living in United Kingdom( London). I am going to see a dermatologist at cancer research centre on NJ as my conditon has worsen after I was put on Syprine. Hope he or she has an answer to the progress in my EPS.

Atorres

Brennie, my daughter was diagnosed on September last year and since then she is under Penicillamine treatment (8 months ago). Right know she is taking 4 pills 1,200 mg per day (2 in the mornings one hour and a half before breakfast and 2 in the afternoons one hour and a half after lunch). She is also taking B vitamin. She is not having any kind of therapy today. When she started the treatment the symptoms where mainly dystonia in hands and head and walking and balance problems. In couple of months those symptoms improved very fast but the slow talking and swallowing problems came out as kind of new symptoms. Chelating cooper from her body apparently caused that.
Today she is showing great improves on her speaking abilities. She is talking more clearly but very slowly (not as fluent as normal people) and she is also showing improvements in her hand writing skills and swallowing issues. The dystonia problems almost disappeared.
She never stopped school attendance so she suffered bullying at school while dealing with WD symptoms. Any way I need to tell you that her teachers and principal assisted us a lot and gave her special care and certain concessions as the no need of taking notes at class and letting her photocopy notes from classmates, etc. And I´m sure that she had some help with her grades too.
Now that I know that there are many different effects in WD patients while taking meds and that those effects may vary depending on how they are mixed (chelators and zinc), the dosage and which chelator is used (Penicillamine or Trientine) , I will emphasize in this aspect on our visit to UCLA. Apparently by reading all your comments I understand that my daughter is responding well to Penicillamine treatment and that she could improve better if we switch to Trientine and Zinc in the right dosage.
Thank you all

lindy

hi kalapi,
from what i have been told it is not the syprine that causes low iron it is the zinc,Cathryn became anaemic when she was on zinc and this is the reason her gastro dr took her off of it. also that is a high dose of syprine to be on, have you had your urine copper checked lately, 24hr test, if your copper levels are at a safe level then i believe you could drop the dose of syprine or maybe just take zinc.
just my opinion.
take care
Melinda x

kalapi

hi every one
I do take Syprine and zinc. I take1250 mg per day of syorine and 300mg of zinc per day. A agree it is very diffiicult to balance the doses of both. I do not work so atleast I can manage some how . I take 2 caps of syp in the morning before I have my breakfast. after 3 hours I have my 2caps of Zinc. 2 hrs later i have my 1 syp cap. 4 hours later I have 2nd dose of zinc. 2 hours later i have 1 syp cap and an hour later i have my last syp. 3 or 4 hours later I take my last dose of zinc. If it is difficult for me I am wondering how difficult will it be for others. Besides this I have been told by my Doc to take Iorn supplement 325mg a day as my iorn level has gone down. I know because of syp my iorn level has gone down. Can any one suggest when should I take my Iorn supplement as it interacts with both of these medicines. I have not started the iorn supplement yet. My Iorn levels is11.6 at present. It is not significantly low. There has been steady decrease in Iorn since I was put on Syp couple of years back. Though I do not wish to alarm those taking syp but they should also keep an eye on their Iorn too.

Sis2WD

My sister was prescribed Syprine 3 times a day and zinc 2 times a day so she has to balance alternating her meds throughout the day. I am not sure if any other WD patients have focus issues but it is very difficult to keep her on the schedule because she has very little attention span as a result of the disease. We all work together to remind her to take her medicine and hopefully with the med schedule she will start to see a difference from taking something to remove the copper and something to absorb the copper before it deposits.

Brennie

Thanks Atorres , when was your dear daughter diagnosed ? Is she having speech therapy ?

Mkuilan

I take Syprine 250mg 3 capsula every morning.

Atorres

Heather, it is good to know your experience.
Kind regards.

JersMom

Jeremy takes both meds but they are 6 hours apart from one another so they do not interfere with each other.

Trientine is given at 6 am and 6 pm to work on the Copper deposits in his body.
Zinc is given at 12 noon and 12 midnight to work on the copper coming into his body by way of food and drink.

It is tough to juggle the hours but, we have found this works best.

Hang in there! We all know how difficult this journey is and we are here to support you. My son is improving and we are just approaching our first year of treatment. Keep the faith and feed off of any information you can get from those of us living with this terrible disease. This forum and others is what kept my faith and hope alive! I would read info from here to my son so he and I both would know there is light at the end of the tunnel!

KEEP STRONG!
Heather

Atorres

Hi everyone. I believe that Heron approach on how to deal with a chelator (Syprine or Penicillamine) and zinc is the right one, we are following that pad. First chelating cooper from the body and once reaching ditox using zinc to avoid new contamination. Brennie my daughter has been in the same position as your son James, and I know how hard it is to deal with that. Be patient I’m sure that improvements are going to show sooner or later. For my daughter the dystonia symptoms in hands and legs were the first ones to go away and she is still struggling with the speech issue but showing progress.
Best of luck

Brennie

Hi Chadsmum and everyone,
My son James was diagnosed last October and he is on Syprine and Vit E now. His progress is slow but at least it is going in the right direction. His speech has been worse these last few days and I am wondering why this should happen and should he be taking Zinc as well. Would this happen if he changed his pattern of taking the Syprine, is the process that sensitive. One evening he took his pills a few hours late. The dystonia in his speech ,hands and legs is very stubborn. When he goes out now with his friends people think he is retarded. It is devastating for him. Has anyone ever come across a way to beat this dystonia or at least lessen the symptoms ?
Regards to Chad from James

Amy4

No as far as I was told and the way Clay took them, it was apart. Really hard to fit in 3 zinc and 2 Syprine an hour before or two hours after. Not enough hours in the day

Heron

Hi Chad's Mom,

I wonder whether your doctor is aware that as long as you are taking a chelator like Syprine or Penicillimine, your urine copper will stay high. The reason is that the chelators work by moving copper through your system (in the blood) and then out through the urine. Zinc, on the other hand, binds the copper in the intestine before it gets into the blood, and it is excreted from the intestine through the feces.

I believe you said that Chad has been on Syprine and Zinc since 2007? So very likely his copper levels are quite low by now. The way to get his urine copper to reflect that would be to stop the Syprine and go on zinc alone.

It's very dangerous to up the dose of meds under those circumstances. If Chad's dose of zinc is increased, it's more likely to upset his stomach and make it harder for him to be compliant. If your doctor has been increasing the dose of Syprine, that could explain Chad's increased neuro symptoms.

When I started treatment, my urine copper was 1800 (!). After taking Syprine and Zinc together for a few months, my urine copper was around 300-400 and it stayed there until I stopped the Syprine, when it quickly dropped to under 100.

Again I highly recommend talking to one of the WD centers of excellence -- too many doctors who have only seen a few WD patients guess at how to treat WD, and patients can suffer or even die as a result.

Best,

Ann

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