Continuous issues with Exjade.

Pratik,

IP6 washes out of your body very quickly. There is no possibility that this ongoing pain is related to IP6. There is no reason wood apple would be involved either. It's actually supposed to be good for the stomach.

Are you eating anything like yogurt or buttermilk with live cultures in it? This would be beneficial. Does the pain lessen if you take antacids? If these don't help, it may be the gastric issue is caused by the liver or gallbladder. The best thing you can do is get your iron load down, as this will improve organ function.

I think the med the doc gave is working, and that you should make sure you consume something with live cultures to repopulate the stomach bacteria.

Pratik,

IP6 washes out of your body very quickly. There is no possibility that this ongoing pain is related to IP6. There is no reason wood apple would be involved either. It's actually supposed to be good for the stomach.

Are you eating anything like yogurt or buttermilk with live cultures in it? This would be beneficial. Does the pain lessen if you take antacids? If these don't help, it may be the gastric issue is caused by the liver or gallbladder. The best thing you can do is get your iron load down, as this will improve organ function.

I think the med the doc gave is working, and that you should make sure you consume something with live cultures to repopulate the stomach bacteria.

I'm improving daily, I'm not taking any antacids or such. The burning pain is actually no more (the one that I used to feel in the middle cross-section on both sides). I cannot say it a pain now or don't know how to phrase, discomfort I guess? But I'm a lot happy then before. I'm not taking any pain killers now and I feel the gas is slowly reducing day-by-day. Yes it's taking time but I hope it would eventually level out.

Well, I'm not a much buttermilk fan, although my dad and mom suggests it a lot of time, especially after we discovered that this pain is due to gas and all stuff, and I drank on Sunday but no more after it. That won't be a problem, no worries, I'll start consuming it daily for now. Thanks.

Consuming what with live cultures (I assume it means buttermilk and all that or some spices mixed in buttermilk?) may help?

And oh, I've also stopped Kelfar since past 4-5 days because I felt pain in my leg joints and little on back, still have little bit. Don't know, gas trouble may also cause join pains. So I was wondering whether if I could start Exjade for now? (I'd take 400mg initially - 1/4th of my dose, if you advise). I think Exjade won't have caused issues to begin with, this all may be due to gas trouble only - sheesh!

Oh and I just got my blood work done on Saturday as my transfusion was scheduled on Sunday and the readings were:

SGPT - 38
SGOT - 52

Creatine: 0.3

All other readings were normal values. So should I be okay to start Exjade again now with low dose? Or would it add to constipation trouble?

Thank you very much, Andy.

-P.

I would agree that you should begin Exjade again with a low dose. You need to be chelating.

Hi Guys,

Today is second day of restarting Asunra/Exjade with 1/4th of my dose (400mg). I'm splitting that too in half-half tablet part.

-P.

Andy,

I can now definitely confirm IP6 is the real culprit of my stomach constipation/pain issues. I noticed the same pain immediately after 30 minutes of taking it.

I was thinking to change the brand, maybe. I'm currently taking the one by Dr Shamshuddin, IP6 Gold.

I took it with ample amount of water and 45 minutes before launch and 2-3 hours after I eat any gluten (milk tea) product.

Are you taking the one from Puritan brand? How is it? Have you felt any such issues anytime?

Thank you.

Hello Andy,
My daughter is on 5 yrs now and is on 40mg/kg asunra for past 3+yrs. However, she has had repeated instances of gastric ulcers in her upper duodenum, 3rd confirmed instance now. Wanted to understand that if you have seen any case where this has been recurrent issue in chelating patients and possible suggestions on how this may be handled.

Ulcers had completely healed with continuous administration of sucralfate syrup (2-3 months) and 1 month course of proton pump inhibitors.

PS:
1. LFT and Creatinine levels have been pretty much below upper side of normal levels or at times slightly elevated, never had be cause of worry.
2. Asunra is given in 2 split doses in water, after food.
 
warm regards,
R

catchR,

I am sorry to hear of this side effect.  Is Jadenu available to you?  Approval in Canada is taking an exceptionally long time, hopefully you have it where you are.

Sharmin

40mg/kg for 5 yr old is a huge dose.

The same kinda thing is happening with a local thal known to me.

Have you tried with low dose?

Thank you for catching that Dharmesh, missed that your child is taking 40mg/kg daily.  That is a very large dose for anyone - especially for a child. She may be at risk for other side effects as well.  She should on a smaller dose.  perhaps 30mg/kg - depending on her iron levels. 

It is also beneficial to split the dose so that she receives half in the morning and half in the evening.

Thanks Sharmin, Hanuman Aashrit for your replies!

Initially, we started off at 20mg/kg. However, her serum ferritin climbed close to 4000. That's when we reviewed the dosage and we slowly increased 30 and then to 40 mg (per kg). Over past year her ferritin hovers between 300 to 800.

Her current dose is 35 mg/kg, split in 2 doses (after each meal).

Thanks,
R

For a young child that is an ideal ferritin level.  When exjade is started ferritin levels go up for several months - this is an indication that the exjade is actually working.  Exjade removes iron from organs and dispels it into the plasma - showing higher ferritin levels.  This does not mean that more exjade is required, it means that exjade is doing its job and soon the ferritin levels will drop. 

Sounds like you are on a good plan  

Sharmin

thanks Sharmin!!

any suggestions on to handle duodenal Ulcer issues?

regards,
R

Milk thistle may be of some benefit for the ulcer. Since it does have benefit keeping liver values in range when taking Exjade, I would advise milk thistle.

At 300-900 fe the dose should not be exceeding 20mg/kg

thanks Andy for your reply! will try introducing milk thistle...any recommendation on dosage for 5yr old?

Just got LFT values and they have come back elevated both SGOT & SGPT 100 U/L
 
Hanuman Aashrit,
any reason for keeping asunra at maintenance dose of 20mg/kg?? I believe 100-200 mg is the new target for thals.

best regards,
R

PS: I sometimes wonder how to manage the all the supplements that need to be given day-in day-out.