Continuous issues with Exjade.

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Offline Andy Battaglia

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Re: Continuous issues with Exjade.
« Reply #15 on: December 13, 2012, 06:22:12 PM »
Introduce things one by one when you start back up to see if you can determine what is the cause.
Andy

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Offline Pratik

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Re: Continuous issues with Exjade.
« Reply #16 on: December 13, 2012, 06:46:33 PM »
Introduce things one by one when you start back up to see if you can determine what is the cause.
Will surely do so.

It is also important to know that while winters being great, it's also a headache for me to manage my sugar levels. My POST launch sugar just before 30 minutes read 550, terrible. Winters are always sugar shooters. So the pain might be also slightly aided to increase because of it? Not sure, as the time it was when introduced a week or two back, I had normal sugar levels.

-P.
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Offline Pratik

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Re: Continuous issues with Exjade.
« Reply #17 on: December 14, 2012, 11:03:04 AM »
Hi Andy,

The reports have arrived (ferritin left). As below:

Hb: 9.9 (unexpected!).
SGPT: 131 (last time it was 141 or so).
Serum Creatinine: 0.4 (it's normal I believe?)

Today is 3rd day stopping Exjade but the pain is still there, most effectively in lower right region. I will pay a visit to family doc today most likely. Bewildered as usual as to what's causing this.

-P.
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Offline Andy Battaglia

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Re: Continuous issues with Exjade.
« Reply #18 on: December 15, 2012, 03:47:52 PM »
Pratik,

Your creatinine level is fine and that is great news. The fact that the pain persists while taking no supplements or meds suggests that these are not the cause. I would suggest pursuing an answer that may not necessarily be related to any substance you are ingesting. Appendicitis? Kidney stones? An intestinal virus? As far as IP6, it can cause some stomach discomfort because of the amount of powder ingested at once. My wife suggests taking a lot of water with the IP6, followed by tea (no milk). You can also split the dose so you don't take as much at one time.
Andy

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Offline Pratik

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Re: Continuous issues with Exjade.
« Reply #19 on: December 15, 2012, 04:18:48 PM »
Pratik,

Your creatinine level is fine and that is great news. The fact that the pain persists while taking no supplements or meds suggests that these are not the cause. I would suggest pursuing an answer that may not necessarily be related to any substance you are ingesting. Appendicitis? Kidney stones? An intestinal virus? As far as IP6, it can cause some stomach discomfort because of the amount of powder ingested at once. My wife suggests taking a lot of water with the IP6, followed by tea (no milk). You can also split the dose so you don't take as much at one time.
I'm feared from Appendicitis or kidney stones as well. That's why my doc suggested to get the sonography done, so I have planned to do it on Monday as today was my TX day.

I'm already splitting IP6 dose and taking it with adequate amount of water. Taking two capsules daily, one 45 minutes before launch and the other 45 minutes before dinner as well. I am swallowing capsule directly, not taking powder form.

Also I believe IP6 did nice job in renewing quality and life of RBCs, I believe.

Okay, I will try to add green tea to my regime while taking IP6.

-P.
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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #20 on: December 16, 2012, 12:49:40 PM »
Hi Pratik....hope you find the cause of pain soon and get well from it.

My son has been on Exjade for a week now and was fine with it. I started him on 1500mg (bw x 20) of Exjade a day split dose instead of 2000mg (body weight x 30). He has had a very bad and persistent cough so yesterday we bought some cough mixture VENOS (Beechams) and after taking this (7.5ml) after midday he started to develop a rash. What was initially small red spots has become very dense and is covering his arms, torso, neck, face, just everywhere. He says its not that itchy but is making his skin feel very warm. He has stopped taking Exjade for now. I phoned the Pharmacist who said not to continue with the cough mixture and as we had hayfever tablets at home (cetrizine dihydrochloride), I asked if this would help stop the reaction. They said it was okay to take 1 pill and that the rash should start clearing in 1 hour. It has not cleared. I do not know if this a delayed reaction with Exjade...if it was the cough mixture is should have cleared by now. We are going to the hospital today. I hope Insha Allah, Allah willing, the rash clears up soon.
Has anyone had this with Exjade (I know that Fatinsyakirah had this problem with their daughter but there is no further post to say the outcome) and how soon before the rash cleared? did you continue with the Exjade afterwards?  


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Offline Pratik

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Re: Continuous issues with Exjade.
« Reply #21 on: December 16, 2012, 02:30:22 PM »
Hi Pratik....hope you find the cause of pain soon and get well from it.

My son has been on Exjade for a week now and was fine with it. I started him on 1500mg (bw x 20) of Exjade a day split dose instead of 2000mg (body weight x 30). He has had a very bad and persistent cough so yesterday we bought some cough mixture VENOS (Beechams) and after taking this (7.5ml) after midday he started to develop a rash. What was initially small red spots has become very dense and is covering his arms, torso, neck, face, just everywhere. He says its not that itchy but is making his skin feel very warm. He has stopped taking Exjade for now. I phoned the Pharmacist who said not to continue with the cough mixture and as we had hayfever tablets at home (cetrizine dihydrochloride), I asked if this would help stop the reaction. They said it was okay to take 1 pill and that the rash should start clearing in 1 hour. It has not cleared. I do not know if this a delayed reaction with Exjade...if it was the cough mixture is should have cleared by now. We are going to the hospital today. I hope Insha Allah, Allah willing, the rash clears up soon.
Has anyone had this with Exjade (I know that Fatinsyakirah had this problem with their daughter but there is no further post to say the outcome) and how soon before the rash cleared? did you continue with the Exjade afterwards?  


I've currently stopped Exjade since couple of days, not going to start unless the SGPT levels go down.

Sorry to hear about your son Amby.

But when and if I get reaction/rashes that makes me itching, I take Avil (by Aventis) and they disappear in no more than 15-20 minutes.

-P.
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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #22 on: December 16, 2012, 04:45:02 PM »
Pratik...hope the sgpt levels come down (super)quick!

He was told at the hospital to continue with the Exjade and to take Piriton for the rashes.The rashes has appeared now cos the Exjade is now properly in his system, to give it time, it is a usual thing to happen and it should clear. Only if the tongue starts swelling should he return to the hospital  :(.

Pratik, from your reply, it appears that you have had rashes on and off with Exjade so should we expect that to be the norm with Exjade or should the rash not return.....? 

 

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Offline Andy Battaglia

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Re: Continuous issues with Exjade.
« Reply #23 on: December 16, 2012, 06:34:39 PM »
Emby,

The rash is usually only temporary and lasts no more than 2 weeks. Try only 1/3 the dose when he re-starts. With Exjade, it's just a matter of getting the body use to the new drug.
Andy

All we are saying is give thals a chance.

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Offline Pratik

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Re: Continuous issues with Exjade.
« Reply #24 on: December 16, 2012, 06:45:21 PM »
I'll start all the supplements from tomorrow, I believe, Andy; as the possibility is ruled out I think as I did stopped them for 2 days and I'm still at the same stake.

I saw my physician and he advised some tablet which I'm taking since Friday evening but still no good. He also told me to got sonography done, but as it was Sunday today, I'll get it done tomorrow. Lets see what I stand, so fed up as well as scared from inside as to what maybe causing it. I hope not stones or appendicitis.

-P.
Every child is special.

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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #25 on: December 16, 2012, 06:55:36 PM »
Hiya Andy....the rash appears to be lessening on his face after taking 10ml Piriton but they have told him to continue with the Exjade. He was taking 1 and half (500mg)  tablets in the morning and 1 and a half in the evening instead of the 2 tablets he is supposed to be taking in the morning and then again in the evening. would this be okay to continue with?

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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #26 on: December 16, 2012, 07:02:30 PM »
They said that they don't think the cough mixture had anything to do with the rash but told him not to continue with it. They said it could be a result of a cold/flu virus as it is very common in younger children but think it is more likely to have been caused by Exjade although they can't say for certain.

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Offline Andy Battaglia

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Re: Continuous issues with Exjade.
« Reply #27 on: December 16, 2012, 07:08:23 PM »
It all depends on the severity of the rash. If it's under control and not bothering him, keep him on it. Our other administrator Danielle, had a horrible rash when she started. She got past it and takes Exjade regularly. It is truly a temporary thing.
Andy

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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #28 on: December 16, 2012, 07:15:51 PM »
Dear Pratik....praying everything turns out well for you. Please try not to worry too much...and this from someone worrying alot at this side of the world  :wink.....it.s a good thing the body gives out warning signs giving us time to take action..and yes it is scary cos sometimes there is no warning. God Willing you will find the cause and be able to treat it successfully and easily.
Thank you for your valuable feed back on Exjade.

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Offline Emby

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Re: Continuous issues with Exjade.
« Reply #29 on: December 16, 2012, 07:23:05 PM »
Thanks Andy. Will do that.

 

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