Exjade dosages and results........

Hi everyone, would like to hear from anyone who commenced Exjade and had their ferritins go up before eventually going down. I am still waiting for my ferritins to go down and I have been on Exjade now for over 3 months. When is it the right time to increase the Exjade dosage? I commenced on one 500mg tablet daily when my ferritins were at 1300. Its 3 months later and ferritins are still on the rise and Im becoming concerned even though the medical staff is not. So I would just like to ask anyone out there about their experiences. First month my ferritins went up to 1400, 2nd month - high 1400's and now at just past 3 months - 1800. I am now freaking out! Im almost tempted to double my dosage on my own but have made an appt to see the Thal specialist. I am on 1 unit of blood every 2 weeks and maintain a HB of above 11. Hope to hear from anyone who can shed some light on this for me. Thanking you in anticipation....

Hi Siena.  Please don't increase the dosage yourself.  Ferritins usually go up before coming back down with Exjade.  For some it takes a few months, and others it takes more.  I'm sure your doctor will increase it on his own if he feels that it's not working.  If you increase it yourself, you may end up with severe digestive or other issues.  Just give it some more time.  1800 is not terrible, so it will be ok.   

Are you taking your Exjade on an empty stomach, and taking it the amount of days prescribed to you? 

Hi Siena,

Your dosage is low so please consult with your doctor. I feel that your doctor has proceeded correctly by not increasing the dosage too fast. This can make exjade much more tolerable for the body when first starting with it, but now that it's been 3 months, bumping the dosage up is the next step as long as there has been no problem with side effects.

When using exjade, patients have to show some patience. In many patients there is an initial rise in blood serum ferritin but this does not mean it is also rising in the organs. It may in fact rise in the blood because it is being removed from body tissue, so be patient and give it a chance.

I must've missed that part.  You are only taking 500mg, Seina?    Yes, that's too low after three months. I agree with Andy.  I'd definitely talk to your doctor about it.  As long as you are tolerating the drug well, then your doc should increase the Exjade per your body weight.

I still don't recommend you doing it yourself, though.

Thank you SO very much Andy and Danielle.....I made an appt and am seeing the doctor this coming Tuesday. I too definitely think its now time to up-the-dosage. Just really need to tell you both just how much of a relief it was to see you both "come-to-my-rescue" when I needed someone the most, as I had spent a very restless night mulling this over in my head. Much affection to you both... Siena xx

I'm glad you made an appointment with your doctor, Siena.  We are always here for you guys when you need us. 

Let us know how it goes.   

Hi siena,
Im on Exjade & have been on it for alittle over 3 months,i was told by doctor that 500mg(1 tab) is not enough and will not take iron out he told me it wouldnt do anything just on 500mg (get iron out of the body) so u need at least 1000mg (2 tabs) for it to be taking iron out of the body.This could be incorrect but this was what i was told,check with your doctor,and it could explain why your iron level is going up & not down.For a week i too took 1 tab and my iron went up now ive uped the dose(by docs request) and my iron level is dropping.Good luck with it all!
sydneygirl

Thank you "Sydney Girl" for your reply, it gives me hope to know that by adjusting the dosage, the ferritin levels will go down. I SO look forward to seeing this happen for me too. Ive been quite depressed the past few days upon hearing what my levels are, so Im quite keen to get started on a higher dosage. I will keep you all informed as to how this pans out for me. Much affection to all of you.....Siena

Hi Siena,

There's no reason to feel down at all. You've been on a very low introductory dose of exjade, which I believe is a better approach, as it lessens initial reactions while the body gets used to the new drug. 500 mg is a very low dose and most patients are on a dose 3 times that or higher, depending on body weight, of course. Give it some time and work your way up to your maximum dosage. Exjade can have serious side effects in some people leading to kidney failure. It is only a small percentage of people, but with the new guidelines concerning monitoring of exjade, I think more doctors will take a cautious approach, introducing patients to the drug.

Hi there Andy, lovely to hear from you. Gosh, there is so much to know about every drug isnt there? I guess Desferal had its own dilemmas, as well as the fact that there was also "needles" involved...... I have to say though that even though the "needle" part of things has now thankfully been eliminated, there is now the added concern of other effects that can happen from this fairly new drug. Its still new with not really that much known about it and so I do feel that we are kind of like "guinea pigs" to some extent. I would like to stay on the lowest dose possible, just enough to get my ferritin levels down. You know what? I think a cure for Thal is the only way we can absolutely get rid of any unwanted side effects along with the worries and concerns, whether it may be from blood transfusions, iron overload or any other thing that can come along. I must say, it can get rather scary being a thal recipient but we are doing the very best we can with what is available to us currently. Fingers and toes crossed and quite a bit of praying, that things will only get better. Thanks again Andy for just "being here". Much affection.......Siena (Melbourne Australia) 

Hi all....I saw our Thalassaemia guru today and my dosage of Exjade has been upped to 1000mg daily. Andy, he explained it exactly how you did (you really should be charging specialist prices I will be on this amount for a month and then do the ferritin levels to see if it is working, if not, he will up the dosage again to 1500mg but Im quite content to at least have been heard. Hopefully this new dosage will see my ferritin levels begin to decline. I will keep you all posted. Thanks again for your replies.....so greatly appreciated, Siena

Hi Andy

           Is There Any Side effect of Exjade

There are some known side effects to exjade. The most common side effects are a temporary rash and some stomach discomfort and diarrhea. In a small percentage of patients there is a more serious side effect that can cause kidney problems. Because of this, it is now recommended that creatanine levels be regularly monitored.

We had an earlier thread about exjade that includes the new information on exjade at

http://www.thalassemiapatientsandfriends.com/index.php?topic=643.0

Hey guys..

I saw all these posts about Exjade and really wanted to point something out.. I've been on exjade for about a year now. It does help in bringing your iron levels down, but the most important thing with increasing it's dosage is to watch for gastric problems. Since you have to take it on an empty stomach, it's very easy to develop severe gastritis and that's no fun, trust me, I had it. My dose was increased to 2500mg and within two days, I was throwing up, had severe abdominal pain and could not even keep water down. They did a abdominal ultrasound on me and saw that my stomach lining was really damaged. My doctor later told me that he had increased the dose on two other patients and they suffered the same side effects at 2500mg. (I think that's the max dose) These symptoms get worse if you take the exjade dissolved in orange juice due to its acidity.

Ive now started doing desferal 3 days and taking a lower dose of exjade. Taking it at night few hours after I eat is helping also.

Also, like Andy said, make sure your kidney functions are tested monthly. Like I said, i've been thru it and it is very painful.

Good Luck!!