Continuous issues with Exjade.

  • 107 Replies
  • 82773 Views
*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Continuous issues with Exjade.
« Reply #45 on: December 22, 2012, 07:28:50 PM »
Sonography would show gallstones but could miss a blocked duct. The bilirubin level would be quite high though, if a duct was blocked. If it is a muscle pull or tear, it can take a long time to heal. If it is a spasm, it should pass much sooner.
Andy

All we are saying is give thals a chance.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #46 on: December 23, 2012, 06:18:39 AM »
Sonography would show gallstones but could miss a blocked duct. The bilirubin level would be quite high though, if a duct was blocked. If it is a muscle pull or tear, it can take a long time to heal. If it is a spasm, it should pass much sooner.
Andy,

So what do I do?

I'm taking 400mg (1/4th) since 2 days with some difficulties. Should I ignore the pain and increase the dose to 1200 regardless of all this?

-P.
Every child is special.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #47 on: December 24, 2012, 08:43:11 AM »
I guess I pretty much spotted the cause of this. Exjade. Yes, Exjade/Asunra - the tablet which I used to take since past 4 years never gave me any trouble which now is continuously troubling me.

I was thinking to take Asunra or not today. I was feeling little good and slight improvement in my liver area's condition when I woke up. But when, just now during meals when I only took 200mg (1/8th of dose!), immediately after 10-15 minutes, I started to experience a mild swelling and pain on right side (liver area) and a bit of discomfort in left side as well.

Andy,

I'm really having a breakdown now. My iron is increasing and there's nothing that I'm able to do and solve the situation. Taking prescribed tablets since more than a week, taking turmeric daily twice, but nothing is helping. I even stopped Asunra for the past week.

Should I switch to my good old Kelfer for a while until these issues fixes? Would it be as effective as Exjade (know that I took Kelfer/Defriprone/L1 till I was 13) because I never had nicer reports with Kelfer (the ferritin ones I mean).

If so, what would be the dosage? My weight is around 45kg.

I worked so hard since past 6 months to fight my Fe levels and I was winning, but at last, I feel that I'm now defeated.  :-\

Also any herbs or some medicine or something which may aid to fix this problem could be possibly suggested by you?

-P.
Every child is special.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Continuous issues with Exjade.
« Reply #48 on: December 24, 2012, 03:26:30 PM »
Pratik,

Have you tried any of the other brands of Exjade? It might be worth a try to see if the same reaction occurs.

I favor Kelfer over Exjade in general, as long as it is tolerated. The dose is 75 mg/kg so your daily dose would be 3375 (3500 would be in the acceptable range).  Combination with desferal would be best.
Andy

All we are saying is give thals a chance.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #49 on: December 24, 2012, 04:01:48 PM »
Pratik,

Have you tried any of the other brands of Exjade? It might be worth a try to see if the same reaction occurs.

I favor Kelfer over Exjade in general, as long as it is tolerated. The dose is 75 mg/kg so your daily dose would be 3375 (3500 would be in the acceptable range).  Combination with desferal would be best.
I've took Kelfer for 14 years. Would it be as good as Exjade over all?

Desferal - Never took it neither do I have it's pump. Needle is not a problem for me neither any fear for the injection or it's prick; says a man whose body bares 5 needles daily and more than 5000 needles since these past 4 years, almost. But the time required, 14-15 hours or even 8 hours, I feel is too much. I too work at home, being webmaster as well as a collegian. :(

I know health serves first, but I'll avoid Desferal as far as I can.

I'm still seeing if my condition improves in several days.

I'm feeling little good now, to be specific, 3-4 hours after taking Exjade, where it's major work is done, hence I believe the liver would be relaxing afterwards.

-P.
Every child is special.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #50 on: December 26, 2012, 04:35:43 PM »
Andy,

While I was talking with Dharmesh, he mentioned he had abdomen pain years ago and that it was detected it was liver inflammation and fluid was gathered at one place. He was given a Lasix injection and the pain went away.

Now is it same as Lasix tablet because I take it on transfusion and sometimes other days to urinate more and relive the load.

What should I do to get the liver inflammation tested? Too much of problems these days and hating things now-a-days.

And I took IP6 3 hours back and again feeling little what burning sensation near liver side. Don't know if it's just my mind or something but I guess I'm too bad for IP6 to be suited. Can changing brand help next time?

-P.
« Last Edit: December 26, 2012, 04:44:46 PM by Pratik »
Every child is special.

*

Offline Narendra

  • ****
  • 462
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #51 on: December 26, 2012, 06:14:34 PM »
Pratik - IMHO, while you would love to have yourself armed with all the medicines, you have to listen to your body. I think you should stop taking IP6 for now. Even consider shifting from Exjade chelator to Kelfer for now and see how it goes.

Our body has a system to send signals to us and we need to listen to them. Please consult with your doctor in this regards. While I do understand you being proactive and taking things in your hand, it would be best to get opinion from the doctor's who treat you. Please stay positive and you will get over it. Attack one thing at a time and try to resolve it.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #52 on: December 26, 2012, 06:41:27 PM »
Pratik - IMHO, while you would love to have yourself armed with all the medicines, you have to listen to your body. I think you should stop taking IP6 for now. Even consider shifting from Exjade chelator to Kelfer for now and see how it goes.

Our body has a system to send signals to us and we need to listen to them. Please consult with your doctor in this regards. While I do understand you being proactive and taking things in your hand, it would be best to get opinion from the doctor's who treat you. Please stay positive and you will get over it. Attack one thing at a time and try to resolve it.
You are very correct, Narendra.

I am just the another guy who goes on stocking body with all the things that could be beneficial. I had IP6 stopped since more than a week and just thought today to have one and I got the result, lol. I just wonder how can IP6 affect it as it's a natural substance even found in many of the foods I eat such as Soy, etc.

I will be likely switching to Kelfer in 3-5 days for a while and see how it goes.

-P.
Every child is special.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #53 on: December 27, 2012, 04:23:07 PM »
Andy,

While I was talking with Dharmesh, he mentioned he had abdomen pain years ago and that it was detected it was liver inflammation and fluid was gathered at one place. He was given a Lasix injection and the pain went away.

Now is it same as Lasix tablet because I take it on transfusion and sometimes other days to urinate more and relive the load.

What should I do to get the liver inflammation tested? Too much of problems these days and hating things now-a-days.

And I took IP6 3 hours back and again feeling little what burning sensation near liver side. Don't know if it's just my mind or something but I guess I'm too bad for IP6 to be suited. Can changing brand help next time?

-P.
Any suggestions/comments Andy?

-P.
Every child is special.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Continuous issues with Exjade.
« Reply #54 on: December 27, 2012, 11:36:20 PM »
The most serious issue I have ever seen reported with IP6 use is intestinal gas, and that isn't really serious.  Is there a possibility that this is gas? I would think an inflamed liver would have been discovered by the recent scan.
Andy

All we are saying is give thals a chance.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #55 on: December 28, 2012, 06:12:53 AM »
The most serious issue I have ever seen reported with IP6 use is intestinal gas, and that isn't really serious.  Is there a possibility that this is gas? I would think an inflamed liver would have been discovered by the recent scan.
Andy,

I do get burps frequently in recent times. Though it's very much possible that they are occurring as a result of various medicines that I need to take for liver cure and all are very strong and has bitter taste (although I swallow it).

But I don't seem to spot whole this situation as gastric trouble. It's definitely liver being humming up, I feel.

-P.

Oh and;

http://www.earthclinic.com/CURES/liver_damage.html

It says coated tongue. Now I don't know if I have it or not, but my tongue is always dried up these days when I wakeup and I need to drink water to make it watery again; caveat that my blood sugar is normal, so that's not something which I can identify as Hyperglycemia. Some white spots on tongue are visible. Am I in a big trouble lol? I took 200mg Asunra in the morning and I can experience somewhat rise in discomfort and little pain.
« Last Edit: December 28, 2012, 06:44:38 AM by Pratik »
Every child is special.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Continuous issues with Exjade.
« Reply #56 on: December 29, 2012, 01:36:39 AM »
Pratik,

Is the bitter taste that is belched up bile?
Andy

All we are saying is give thals a chance.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #57 on: December 29, 2012, 06:20:12 AM »
Pratik,

Is the bitter taste that is belched up bile?
Andy,

I don't get what you mean exactly. The burps have now stopped. My liver seems to be swollen up. As well as the pain in left side is again visible after taking Exjade yesterday.

I've applied to get Kelfer and I'll receive it today most probably and start it right away for time being.

I also plan to meet a liver specialist on Monday most probably.

-P.
Every child is special.

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Continuous issues with Exjade.
« Reply #58 on: December 29, 2012, 07:26:05 PM »
Bile is the bitter taste you get in your mouth sometimes when you burp. Regular bile burps are usually a sign of gallstones but can also indicate a blocked duct between gallbladder and liver. Can you learn more about the scan you had? You need to know that they looked for both gallstones and blocked ducts.
Andy

All we are saying is give thals a chance.

*

Offline Pratik

  • Thal Major.
  • *****
  • 826
  • Gender: Male
Re: Continuous issues with Exjade.
« Reply #59 on: December 30, 2012, 06:06:51 AM »
Bile is the bitter taste you get in your mouth sometimes when you burp. Regular bile burps are usually a sign of gallstones but can also indicate a blocked duct between gallbladder and liver. Can you learn more about the scan you had? You need to know that they looked for both gallstones and blocked ducts.
No, fortunately I never had any bitter burps.

And I went to my physician again, lol, not giving up so early; to probably get to try some other medicine.

I took one dose at night and one at this morning and I'm at least feeling good than what I was feeling yesterday. The medicine is "Spasmo-Proxyvon" if I'm not mistaken.

I really hope that this clears out this weird situation that I'm revolving around since last 2-3 weeks.

I'll see if I feel much better with this or I'll pay a visit to the liver specialist.

-P.
Every child is special.

 

SMF spam blocked by CleanTalk