Continuous issues with Exjade.

Hi Andy and everybody,

I finally thought to post this.

I'm having issues with Exjade since past 2 weeks. In my 4 years of taking Exjade, I've never had such en-longed issues.

I had skipped Exjade for past 3 days and started again with 800mg (1/2 of my dose i.e. 1600mg) today and again I am experiencing mild pain/discomfort near liver and on lower right side. If I stop Exjade, I'm just fine.

What to do? Is there any ailment or alopathy medicine that could be taken?

I'm currently taking HepaMerz for liver (brings SGPT down) and daily take turmeric. Though liver part is not very paining, but first time I'm experiencing mild pain in lower right side as well, lol.

Meanwhile I'm taking IP-6 daily to make sure someone is working on my back to remove iron.

Regards,

-P.

Pratik,

Not to scare you but IMO, you should evaluate your liver condition before starting Exjade again. Here is what I read about Exjade side effects.

From : http://www.us.exjade.com/index.jsp?usertrack.filter_applied=true&NovaId=4029462064339200170

Liver: People with pre-existing severe liver problems should not use EXJADE. A lower starting dose of 10 mg/kg/day is recommended for people with moderate liver problems. Anyone using EXJADE who has mild or moderate liver problems should be closely monitored. They may need their dose adjusted based on efficacy or safety.

Some patients developed severe liver problems, in some cases fatal, while on EXJADE. Many of these patients were greater than 55 years of age and/or had multiple medical conditions already affecting their liver. Your doctor will give you blood tests called serum transaminases and bilirubin before starting treatment, every 2 weeks during the first month of treatment, and then monthly.

I hope that is not the case with you but you should check it out before you start it again. Also, you can switch to Kelfer if that was working for you earlier. After all, there is a reason why we have multiple chelators in the market.

I really love Exjade and don't want to switch to other chelators.

But I now plan to stop for again few more days.

What type of tests should I get done?

Pratik,

I am not a patient so can't guide you from my own experience but from what I have read, here are few pointers.

http://www.thalassemiapatientsandfriends.com/index.php/topic,3867

have the same "Extrameduräre blutbildung" in my body like him. i have this for over 20 years now.
and for the liver-infarkt...a good doc sees it by the "Ultraschall" nowadays where i have the iron troughn
out of my liver the pain is gone away....

http://www.thalassemiapatientsandfriends.com/index.php/topic,308
Poirot mentions to get a  Liver function test (LFT) and a liver MRI for getting a clearer picture.

Pratik,

I am not a patient so can't guide you from my own experience but from what I have read, here are few pointers.

http://www.thalassemiapatientsandfriends.com/index.php/topic,3867
http://www.thalassemiapatientsandfriends.com/index.php/topic,308
Poirot mentions to get a  Liver function test (LFT) and a liver MRI for getting a clearer picture.

I'm having pain near my lower right (kidneys I assume?) more than liver these days. I'm simply bewildered as to why is this happening.

Andy,

Maybe IP-6 is conflicting with Exjade in some form? Because in these past 4 years, I never had such an instance. Although for the past 3 days, I was okay as I had stopped Exjade.

My transfusion is planned on this Saturday, so the blood work will be done on Friday.

Let's see. What tests should I get done for liver and kidney apart from ALT/AST?

edit: I also noticed two small red spots on my leg joints, what's happening? So scared.

-P.

Pratik,
you should really see your hemo or your primary care giver. In this forum, most of us are parents or patients or friends and not a doctor. if something is going on for more than few days and it is bothering you, you should get it checked by the people who are trained to look at these thigns. Just my thought...Hope you feel better soon.

Pratik,

You should also regularly have the serum creatinine test for kidney function. Because HepaMerz is contraindicated when kidney function is poor, and because Exjade can adversely affect kidney function, I would suggest stopping HepaMerz for now, along with Exjade, until you have had the serum creatinine test done. This is quite important.

Pratik,

You should also regularly have the serum creatinine test for kidney function. Because HepaMerz is contraindicated when kidney function is poor, and because Exjade can adversely affect kidney function, I would suggest stopping HepaMerz for now, along with Exjade, until you have had the serum creatinine test done. This is quite important.

What? HepaMerz maybe instead spoiling up things? Didn't quite got it. OK I will stop it. It was prescribed to me more than 2 years ago for the mild increase I had, I was just taking it recently due to these issues.

So serum creatine is same as SGOT or something different?

I'm now stopping Exjade until the reports come, which is on Friday.

Also Bostonian, thank you for advice. I will see my family doc.

Thank you everybody.

-P.

Serum creatinine is a test for the kidneys. The other tests are for the liver. It's not that HepaMerz is a harmful supplement. But it is not to be used if there is a problem with kidney function, and because Exjade can cause kidney problems, you need to get the test done to make sure your level is normal. If your serum creatinine test is normal, it should be safe to resume HepaMerz.

Serum creatinine is a test for the kidneys. The other tests are for the liver. It's not that HepaMerz is a harmful supplement. But it is not to be used if there is a problem with kidney function, and because Exjade can cause kidney problems, you need to get the test done to make sure your level is normal. If your serum creatinine test is normal, it should be safe to resume HepaMerz.

I regularly do SGPT and SGOT.

Isn't SGOT the serum creatine function test?

SGPT=ALT
SGOT=AST
Both are liver function tests. Serum creatinine is a kidney function test. If you got to Table 7.7 in the SOC Guidelines, it gives a complete list of tests required for each chelator. For your convenience, I am attaching a copy of the SOC to this post.

SGPT=ALT
SGOT=AST
Both are liver function tests. Serum creatinine is a kidney function test. If you got to Table 7.7 in the SOC Guidelines, it gives a complete list of tests required for each chelator. For your convenience, I am attaching a copy of the SOC to this post.

Sorry, I was mistaken with the names. Yes, I do get creatine done at least on alternate basis, if not every time. It usually shows as normal. Will get it done this time as well.

And thanks for the attachment, will surely look to it.

-P.

It's second day stopping Exjade today and I'm still feeling "burning like" pains in liver and kidney. My blood work will be done tomorrow. Really experiencing worst time ever with those two organs.

Would IP6 be causing by any chance? Should I skip IP6 for a day or two and see if it helps?

I doubt IP6 could cause pain like that. I would suggest stopping everything for a day or two. Have you ever had kidney stones?

I doubt IP6 could cause pain like that. I would suggest stopping everything for a day or two. Have you ever had kidney stones?

Never.

My kidney always have been superfine. I always used to drink 6-7 liters of water daily and still do so. This time, liver and kidney, both seem to be on target and I believe Exjade is causing this possibly.

Can excess calcium also cause this? However, I don't think that I'm full with calcium, lol.

That'd be good advice to start with, stopping all supplements and medicines for a day or two.

-P.