Exjade Question........

Hi everyone!! I have been on Exjade 500mg tablet daily for about 6 weeks now and have been having nausea on and off as well as an indigestion type feeling in my stomach. I am now trying to take the Exjade dosing of an evening instead to see if it makes any significant difference. Is anyone out there taking it at the end of the day instead of the start of the day and what are the rules for this? Is it 4 hours after the evening meal? should I also have something to eat half an hour after taking it?. My ferritins now have gone up from being 1300 (before Exjade) to 1400 (6 weeks into Exjade, which my doctor says is all going as it should). I certainly dont want my ferritin levels to go up too high. Does anyone have any more info on this? thanks to all who reply, I so very much appreciate it.......God bless, Siena

Hi, Siena.

My stomach was pretty bad when I was taking the Exjade during the day, and it calmed down a lot since I started taking it at night instead.  The instructions for evening is the same as taking it in the day.  It's recommended to take it on an empty stomach, but not required to eat afterward.  If you want to take it before you go to sleep, just make sure you eat an early dinner and then take it before you go to bed.  It takes a lot longer for me to digest for some reason, so I usually wait a few hours after I eat before taking the Exjade.  I'm not sure of the exact amount of hours that you should wait.

As for the ferritin levels going up, this usually happens with Exjade before it comes back down.  Just give it some time before you get worried.  Sometimes Exjade doesn't work for certain people, so you will have to wait and see if your ferritins come down.  My ferritin went up before it came down also.

Give it a few months and see what happens.  I hope your stomach problems decrease with taking it at night.   

Hi Danielle and thank you so much for answering my question. So far so good with the indigestion/upset stomach and I hope it continues this way. Im still not too sure as to how many hours I should wait after having my evening meal but at the moment I am waiting about 2 hours. I hope this is ok. May I ask what your ferritin levels were before you commenced Exjade and how much they are now? and how long did it take for your levels to actually go down? I hope Im not being intrusive in asking you. Also, how are you going with your arrythmia? do you take medication for it? I also have it and get bad bouts of it from time to time which render me feeling quite depressed over it. I am trying to learn how to cope with it but it is so so hard. Hope to hear back from you and again, thank you for taking the time to reply, hugs Siena 

I'm glad your stomach is doing better.  I hope it continues to stay that way, also.

My ferritin had gone down from 2,000 to 800 when I was taking the Exjade regularly, over a 3 month period.  I was also using Desferal, so that contributed to it.  However, the past few months, I kinda slacked off between having the heart and stomach problems and my ferritin went back up to 2,000.     I'm doing it regularly again now, though.

My arrhythmia is gone now, ever since I had the last cardiac ablation done in October '06.  I don't have anymore palpitations or rapid heartbeats.  I didn't want to go on any medication, so that is why I opted for the ablation once again.  This was my second ablation.  I had the first one done back in 2001.  Have you seen a cardiologist about your arrhythmia?  If so, what did he/she suggest?

I'm not a big fan of heart medication, as it tends to make you lethargic.  I don't need to be any more tired than I already am with Thalassemia.  I'm sure you understand what I mean.

You shouldn't have to live that way.  It's very uncomfortable to live with an arrhythmia and can be extremely debilitating when serious enough, as mine was, so I would definitely see what you can do about it.   

If you have any other questions, or need advice, I'm here.  Don't hesitate to ask me anything.   

Hi again Danielle, thanks so much for replying to my post. Im so glad you no longer have any heart arrythmia, that would be such a blessing. Yes,  having it is SO debilitating and renders me depressed for days thinking that at any given moment it can rear its ugly head. I was put on medication 3 years ago and I must say that at least with the medication the beats dont go any higher than 80 or so but until it reverts to normal rythym it can take up to a day and of course, this leaves me feeling all washed out. I started getting AF (atrial fibrillation) after I lost my longed-for baby son 10 years ago after I continually grieved over his loss. It broke my heart (litterally) as I had to go on fertility drugs to fall pregnant. Two miscarriages later and I end up with AF which has become the bain of my existence. I am too frightened to have an ablation but if I was guaranteed that it would work I might think about it. How often were you getting the arrythmia and was it AF? how long did each episode last with you and how did you get through each one? Again, sorry if Im being intrusive but I really dont have anyone else that I know that gets this so Im really relieved that there is someone who understands what its like. My husband trys to give me support but he really doesnt understand the frustration and fear that I have. Thanks Danielle, I look forward to hearing from you again.....kindest regards, Siena

Hi Siena,

I'm so very sorry to hear about your beloved baby boy, and subsequent miscarriages.  How terrible.     People say there is no such thing as an actual "broken heart" when grieving, but I beg to differ with all of them.  That kind of stress can definitely give you heart problems.   

I was diagnosed with SVTs (Supraventricular Tachycardia), and was having the arrhythmia every day.  Each episode was different, but they were all horrible.  Some lasted about 30 seconds, while others lasted for hours.  I tried to do everything, but nothing ever helped.  I was told to "bear down" (as if having a bowel movement) when I was having an episode, to slow my heart rate, but that never helped me either.  I just had to deal with it until it passed.  Each time that I had an episode, my heart rate went so fast that I couldn't even breathe.  Even if I was sitting down, doing nothing at all, my heart rate would jump from 80 to 250 out of nowhere.  It was so uncomfortable.  I just couldn't take it anymore, and I didn't want to go on medicine because I was already tired all the time.  So, I had gotten a few different opinions from Cardiologists, and had gotten one of the best Cardiologists and best heart hospital in New York.  Each Cardiologist told me that I should shoot for the ablation, so I gave it a shot, because I didn't want to deal with being like that anymore.  I know now that I made the best decision.

I'm glad that the medicine is at least helping you.  If you are still having problems, I would definitely get some different opinions.  I would hate to see you stay like that.   

And you are not being intrusive.  Ask me anything you want, or vent if you need to.  I'm always here.   

Hi Danielle,

I understand that you are taking desferal with exjade. Did your doctor recommend it to you? Is the dose for desferal been cut while doing it in combination with exjade?

Right now i am taking a dose of 750mg of exjade and my desferal had been stopped. This is my 5th week on exjade. So far i'm not having any side effects other a slight increase in my ALT. My ferritin had doubled on the second week of using it but slowly it is coming down. Hopefully my results will get better and i'm hoping that my ferritin can be reduced more

Hi Danielle,
I understand that you are taking desferal with exjade. Did your doctor recommend it to you? Is the dose for desferal been cut while doing it in combination with exjade?

Thank you for private messaging me.  I didn't see this before. 

Yes, my doctor recommended using them both together, and he cut the dose of the Desferal down to two or three nights a week, instead of 7.

If you have any further questions, that weren't addressed here or in the private message, please do not hesitate to ask.   

Siena!!!

If your still getting nausea from the Exjade you can try and take some Rennies, they really good and dont have anything else in them except for calcium and magnesium for heartburn...

They should help you out there...

 

One side note about antacids. Do as Smurfette advises and take one with calcium and magnesium. Do not take an antacid with aluminum in it if you are taking exjade.

http://www.drugs.com/exjade.html

What other drugs will affect Exjade?

Do not use other iron chelating medicines with Exjade unless your doctor has told you to.

Do not take antacids that contain aluminum while you are taking Exjade. Aluminum antacids include Amphojel, Gaviscon, Maalox, Mi-Acid, Mylanta, Rulox, and others.

There may be other drugs that can affect Exjade. Tell your doctor about all the prescription and over-the-counter medications you use. This includes vitamins, minerals, herbal products, and drugs prescribed by other doctors. Do not start using a new medication without telling your doctor.

Hi Sienna

I went on Exjade after changing from L1 and found my stomach took a pounding for some time whilst being on Exjade. Since starting it almost 6 months ago, my stomach is alot better for it now days. When given the initial directions i was told 250mls of water to dilute the tablets in but since going up a few doses I now just fill a large glass with water and disolve them. Easier to drink and easier on the stomach.

My ferritin levels went up alot once I commenced Exjade but over the last 2 months they have come down alot. I feel better and my skin has cleared up I have noticed. Not that I was dark in colour but since my "lack of attention for self medication" for some time I am doing alot better now days.

In regards to the AF, well I do wish you all the best and I am sure you will sort things out in due time. If you need anything you know where I am.

Miaki xx