Exjade, antacids, and other drug interactions

Hi everyone,

I am 35 with thal. int.  As of today I need to go back on Exjade.  I was taking it for about 6 months, but stopped due to developing Gastritis (similar to an ulcer) and other health problems unrelated to Thal.  From what I remember you had to be careful with antacids while taking exjade.  Does any one else talk antacids with the Exjade?  My doctor wants me to do both and is looking into what would be safe. 

Also, what other drug interactions are a problem.  I am currently taking Premarin and other herbs etc. due to having a full hysterectomy in January.  I do not like taking any medication so needing to go back on exjade is bothersome, but i understand the benefits from doing it.  At this time I am not getting transfusions, however i did get many over the past 5 years (post pregnancy and other issues).  I am hoping to be done with the transfusions for a while.  With this in mind, I am hoping that i won't need to take exjade for a long period of time. 

Thanks in advance,

Lisa

Hi morellilisa ,

You can take antacids when you take Exjade as long as the antacids don't contain aluminum (personally, I question the safety of long term use of aluminum containing antacids and recommend that they are never used). There are many antacids on the market that do not contain aluminum.

If you have stomach problems with Exjade, try switching to evenings to take it.

Also, if your iron level is not significantly high, you might want to try the natural supplement IP6 and/or green tea extract. Both are natural chelators and also strong antioxidants and are of value to anyone with a high iron load, but in cases where the iron load is not very high, they have been known to control the iron load without also using chelating drugs.

Hi Andy,

What number is considered to be not significantly high?  As of my last blood test, my iron level was at 1700.  My doctor wants me to go back on Exjade at 1250mg.  This seems like a high dose.  What is the normal dose?  As I stated before I do not care to take medications.  I would prefer to take vitamins and herbs if they have been proven to work just as well.  One of the major down falls of taking exjade is needing to go in once a month to have my liver/kidney functions tested.  This is a huge side effect to consider and I hate to lose any blood due to my anemia (my Hb is around 7). 

Thanks for the info,

Lisa

Hi Lisa,

The Exjade dose is determined by your body weight and is usually prescribed from 20-40- mg/kg body weight, depending on the iron load, and how quickly the reduction in iron load is needed. Someone who is not currently transfusing and whose iron load is relatively low, can probably manage with the low 20 mg/kg daily dose, although 30 mg/kg would lower the ferritin faster. Should you have to resume Exjade, try starting out with a half dose for the first 1-2 weeks and see if your body does a better job tolerating it. Then raise your dose in increments until the desired dose is reached. As I mentioned, some people have also had success taking it in the late afternoon or evening on an empty stomach.

How many transfusions have you had? What was your ferritin level before you took Exjade the first time? Have you ever had any scans done of your liver or heart to measure the iron load? If your organs show iron load, you will probably need to use a chelation drug, but IP6 and green tea extract can add to this chelation and also help protect the organs from iron damage by their antioxidant effects. If you have no iron load in your organs, you can work to lower your iron with the natural supplements and see if this makes a noticeable difference.

Andy,

for the first 29 years of my life I never had a transfusion.  Then I became pregnant and everything changed.  Since having my son I have had 18 transfusions (since 2003).  Prior to having my son my ferritin was around 1200. I went on desferal for a year and my number went to 700.  Later I went on exjade because my number went back up.  I was on exjade for 6 months (june 08 to dec 08).  I stopped due to the stomach problems and I also experienced other major medical problems unrelated to the thal (full hysterectomy).  During december and january I had 4 transfusions due to complications etc. resulting in the hysterectomy.  This caused my numbers to go up even higher- no surprise.  I get an echo done every year (past 6 years).  My doctor does not feel that it is necessary to scan my liver.  However, I did have a CT scan done in December trying to find out why I was sick and they did look at my liver and did many blood tests to compare functions (different Dr.).  I was told it was all normal. 

Are there any other drug/vitamin/herbal interactions I should be concerned about while taking exjade?  I take sooo many things to treat not only the thal. but also menopause due to the hysterectomy.  Where can I find IP6?

thanks,

Lisa

Hi Lisa and welcome to the site

My doctor does not feel that it is necessary to scan my liver.

I really don't agree about this because in thal intermedia the ferritn readings are not a reliable reference to determine iron overload in organs. It was found that Liver Iron Concentration (LIC) is more in thal intermedia patients than thal major though they have the same ferritin level

Unreliable readings of ferritin in Thal intermedia were also discussed and how same ferritin has a different LIC in thal major and thal intermedia patients. I was able to copy the readings and you will find a great difference in the LIC range

http://www.thalassemiapatientsandfriends.com/index.php?topic=2863.0

Ferritin                         LIC mgFe/dry weight TM         LIC mgFe/dry weight TI
500                                       2.7                                 5.8
1000                                     5.4                                    11.6
1500                                       8.2                                 17.4
2000                                       10.9                                 23.2

These numbers really shows that we never depend on serum ferritin in TI for detecting iron overload

The the name of the scan that measure the iron in liver is ferriscan and the one that detects iron in the heart is called T2*

As for the IP6, you can buy it online from Puritan's Pride

http://www.puritan.com/antioxidants-040/ip-6-inositol-hexaphosphate-005745

manal

Hi Manal, plz can i know what is dry weight TM and dry weight TM?

thanks Manual for the info. 

I live in a suburb of Chicago so I am relatively close to Children's Memorial in Chicago.  My plan is to go there to have an annual done.  I will ask to have the iron scan you mentioned done.  I have been there in the past (3 years ago), however all they did then were blood tests.  I was actually told upon my first meeting that I do not have Thal. This was very frustrating since I had been dealing with symptoms of thal for 32 years.  In the end they determined that I have some sort of mutation that makes my thal unique.  I don't know the specifics, just that they said I will be labeled intermediate and that only 50 or so people have this specific thal mutation.  What made the dr. question if I had thal was the high amount of fetal hemoglobin i carry.  It is still so confusing to me, but I am learning. 

Would the liver function tests come out in the normal range even if there were high amounts of iron in the liver?  Just curious. 

Lisa

Hi Lisa,

You will probably need to use Exjade, but you can try IP6 and green tea extract to see if there is any benefit, before starting on Exjade again, or take them along with Exjade for an added effect. Puritan is a good source for both. You should also try to follow a low iron diet as excess iron absorption from food can be a major source of iron in non-transfusing intermedias. Drinking tea with meals also helps inhibit iron absorption from food. Unless your iron load is severe, you most likely won't see any signs of overload from liver function tests. The main concern with Exjade is to take it on an empty stomach and avoid metal containers or utensils. A list of known interactions (there are not many) can be seen at
http://www.rxlist.com/exjade-drug.htm

Contact info below for Chicago. Make sure you are being seen by a doctor who treats thalassemia.
Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618

Hi Mohamed

I meant by TM : Thalassemia major and by TM: thalassemia intermedia

manal

The doctor I saw at Children's was one with in the Thalassemia Department.  I also worked with Dr. Thompson on trying to get on a study for exjade before it became available.  My iron levels at the time did not go high enough to become qualified for the study.  It was at 994, so I was told to eat lots of foods containing high iron amounts.  3 weeks later my iron level was as 630.  No one could explain why this happened.  My theory is when I was there (1st visit) they took about 12 vials of blood for testing.  Has anyone heard of this happening?  Dr. Thompson has also been in contact with my Dr. updating him on all results and treatment options.  My doctor has suggested that I return to Children's for  more testing due to their facility and daily interactions with Thal patients. 

Thanks everyone for the info and support.  I am grateful to have found this website.  My entire life has been full of questions and feeling very alone in regards to no one else understanding what I go through or how I feel due to not having thal themselves. 

Lisa