Hello to you all!

Hi,

My name is Jos.-. On April 17, 2009 I was diagnosed having Beta Thalassemia with HbE-disease. So I'm rather new to this idea itself and this 'part of the world'. Looking all over the internet for information. My specialist for internal diseases told me that I'm heterozygote and there were not many bad effects to be expected. But he prescribed me Exjade to get rid of my too high serum ferritine.

I didn't start yet with Exjade. Looking around on the internet I'm not very happy with all the stories about the side effects of this medicine. Is there anyone who can tell me some more about Exjade? Are there other parts of this forum to look at or ....

Kind regards,

Jos.-

Hi Jos
HbE-beta thal is usually less severe and most patients may or may not require hypertransfusions. How old are you and how was your thal diagnosed ? Since your doc has prescribed you exjade he probably must have conducted your liver and kidney function tests and found it ok. My three year old has been on this drug for the last 6 months without any side effects, so you don`t have to worry much about it. Do check out the posts in the iron chelation corner, you will probably find all the answers to your queries and if you don`t just question.

welcome to the site
maha

Hi Jos and welcome to the site

How much is your serum ferritin???


manal

Hi Jos

Has your serum ferritin been checked and have you had any liver or heart scans to to give an accurate measurement of your iron load? Even without transfusions, your iron can get high because your gut will absorb too much iron from food. There are some things you can try to reduce this absorption and there are also natural supplements that can help reduce the iron load, but an analysis of your true iron levels is a must.

Thanks maha, Manal and Andy for your kind replies. Let me give you some answers to your questions.

* First of all some personal data: I'm 60 years old, live in the so called Green Heart of The Netherlands, work at the student affairs department of an university. I'm married and we have two kids studying at two other universities in The Netherlands
* Last January I decided to take part in a health check organized by my university. 'Let's see how healthy I am!'   
I didn't had any complaints till then
* Results: serum ferritine 1255 ug/l, plus too much glucose and too much cholesterol. 'Of course' my blood pressure was too high too.
* the medical examiner referred my to my GP who in turn referred me to an internist. The first diagnosis of all three doctors was hemochromatosis
* In last February in hospital I had several extensive blood tests resulting in: no hemochromatosis, we have to look further. On April 17, 2009 I got the word: heterozygous beta thalassemia and heterozygous HbE-disease. So I'm a carrier and don't need blood transfusions. Because there was no hereditary hemochromatosis I got medicines for the diabetes mellitus type 2 (metformine) and for the cholesterolemia (atorvastatine).
* Last February I also had an ECG and an echography. All was fine except for a too fat liver (don't know the correct word in English).
* On April 17 my blood data regarding cholesterolemia, diabetes and blood pressure were really good because besides using the drugs I live like a monk with respect to my diet. My serum ferritine which was at the start 1255 came down thru 1003 to 800, but went up to 920 ug/l, probably as a result of atorvastatine. So my doc prescribed me Exjade (deferasirox) to get that serum ferritine down and referred me to one of the sickle cell centers in The Netherlands where all patients with sickle cell anemia and thalassemia have to be treated/examined.

So that's the story to my rather simple question 'are there any positive results about Exjade and it's side effects to tell?'

Thanks in advance for another round of replies.

Jos.-

Jos,

Thousands of patients around the world use Exjade daily with few if any side effects. Most side effects are temporary and can be minimized by using lower doses to start and working your way up to the effective dose. With that said, it is only honest to mention that there have been deaths in patients using Exjade and most of these have occurred in older patients, but of great importance is that most patients who have died had a long history of kidney and/or liver problems. Because of your fairly low ferritin level, you may be able to take a lower dose, as you don't appear to be dealing with an ongoing iron buildup, although an MRI scan would help verify this.

Your ferritin is high but not dangerously so. If you are interested in trying a natural approach, there are several things you can do to lower your iron level. Observing a low iron diet is the first step. Using some simple changes to eating habits will also affect how much iron is absorbed from your food. Eating dairy and drinking tea with meals will lower the iron absorption in your gut. Vitamin C increases iron absorption from food so citrus fruits and juices should be taken only between meals. There are also some commonly used supplements that are known iron chelators and also strong antioxidants which can help protect your body from the damage excess iron does to the cells. IP6 (Phytic Acid or inositol hexophosphate) and green tea extract are both in this group. Many members of this group have seen a change in skin tone within weeks of starting to use IP6 and this shows a reduction in iron.  Because your ferritin is not terribly high, and if you're in no hurry to use a drug to remove iron, you may want to investigate a natural approach first.

HbE and beta thal carrier together can actually result in a transfusing major, depending on the particular beta mutation. Some HbE beta thals manifest in more of an intermedia condition, where transfusions aren't needed but hemoglobin levels are significantly lower than normal. One effect seen in some with non-transfusing intermedia is excess iron absorption and the effect is sometimes much higher in organs than ferritin tests would indicate. Because diabetes can be caused by iron overload, this should be investigated. Again, if you have not had any scan of your liver or heart for iron load, this should be done. Do you know what your hemoglobin level is and do you have a history of a low hemoglobin level?

Also, your children should be tested to see if they are carriers of either gene, as this is important information to know when they choose to have children of their own.

Hi Jos,

Welcome on the forum   About your exjade, personally i don't think your serum ferritin is that high that you should be using exjade,exjade has a few side effects like any other medicine,and people who already have liver problems should not be using it,because it can be fatal as it can result in hepato failure.IF you already have problems in liver,other wise there are quite a few members here,including my 8 years old daughter who are using exjade,but the problem with these patients is that they keep recieving huge amounts of iron through regular transfusions,but thats not your case,so i think you should first try some natural ways to lower your ferritin.

First of all,don't take too much iron rich food,red meat,i assume your doctor must have asked you to either stop or cut down due to your cholestrol? Its good because red meat is the main source of iron.Between  do you know what is your hb level? Start taking tea with meals as tea inhibits iron absorption from food.

One thing you should look into are anti oxidants like IP6 ( Inositol Hexaphosphate) Its a powerful anti oxidant and a mild natural chelator too,It will help avoiding damage caused by extra iron in the blood and will help you chelate naturally,of course its not powerful like exjade but its natural and has no side effects.

I hope this helps,if you have any other questions in mind,please feel free to ask .

Zaini.

Andy, Zaini great minds think alike ''at the exact same time''

manal

Manal,

I didn't see Andy's post first otherwise i wouldn't have posted the same thing,and its a coincidence that we posted by the difference of few minutes  .

Zaini.

Thanks Andy and Zaini for your responses. I'm going to look at them right away. And of course to the Iron Chelation section of this forum as Manal suggested earlier on.

A quick respons @ Zaini: my Hb is 8,2 during all of the four times they examined my blood the last few months.


Jos.-

Hi Jos,

If its 8.2 gm/dl then its quite low,that makes sense that your body is absorbing more and more iron,when hb is chronically low,body tends to absorb more and more iron through the gut,so i think avoiding iron rich food,tea after meals,no citrus fruit with the meals and IP6 will hopefully solve your high iron problem,it may take a little bit time to do it the natural way,but i'd say its better then taking exjade.

For your low hb,please take folic acid,and if you can find wheat grass it may help you,even if it won't raise your hb you will feel a big difference in your energy levels.

Hope it helps .

Zaini.

Hi Jos,

Have you ever been told you are anemic? Hb of 8 is classified as thalassemia intermedia. It's high enough to avoid transfusion, but low enough to have an impact on many quality of life and health issues. In light of your low Hb, I think it is imperative that you do have a liver MRI or heart scan (T2* is the most accurate measuring tool for cardiac iron load) to determine if your iron load is higher than your ferritin would indicate. It is quite common for intermedias to have ferritin levels that are high but don't look dangerous, but actually have a high iron load in their organs. This really needs to be determined to decide the course of your treatment. If it is a simple matter of high ferritin levels, this will be easy to address with short term chelation and possibly at a low dose. If the organs are involved, you will have to chelate accordingly. If your organ iron is high, it means that there is an ongoing problem of excess iron being absorbed in your gut. Regular chelation would be needed if this is an ongoing problem.

The dietary tips given previously are very important when thals have low hemoglobin levels. Do all you can to minimize your iron intake and avoid iron cookware. The body will absorb more iron than it needs when anemic, regardless of the cause of the anemia and in thalassemia, low iron is not the problem, so be conscious of your iron intake and try to take tea with your meals.

I find it amazing that this was never diagnosed before in your life.

Hi Zaini and Andy,

Thanks again for your responses, although it's not fun reading them, because it underlines the possible seriousness of my current health problem.

To be as clear as possible, I'm afraid we use different measures for describing Hb. In the Netherlands mmol/l is used as a measure for Hb. The normal levels for men are 8,5 - 11 mmol/l. According to Wikipedia 1 g/dL equals about 0.6206 mmol/L. My arithmetic isn't that good this morning to be able to calculate how much 8,2 mmol/l is expressed in g/dl. Let me say it is (just) a little below the minimum normal level for a grown up man.

So no one ever told me that I'm anemic. And in my opinion I never had any reason for thinking of having for example an energy problem or what ever problem with quality of life or health issues. Because of that my blood wasn't examined for a long long time.

As I understand out of your reaction Andy an MRI is really necessary, the echography plus ECG I had are not enough to know the real situation of my organs and to decide the course of my treatment. Does this still stands now our confusion of tongues is taken away? By the way what does T2* mean?

I will try to follow the tips regarding the diet.

Thanks once again. Great site, great people.

Kind regards,

Jos.-

I remembered something our member Dore, also from the Netherlands told us about hemoglobin measurement, so we need to clarify the unit of measurement in which your hemoglobin level is expressed. Is your Hb listed as g/dL or mol/L? this makes a huge difference. If it is the latter, your Hb level would actually be normal.

Jos,

Thats why i wrote "IF its 8.2 g/dl" because i had a hunch that you were not using this unit,as our member Dore is from Netherlands and once i got confused with her readings too.

God its confusing,it took me an hour to convert this  your Hb is 13.2 g/dl which is quite normal.

Zaini.