Exjade dosage Vs. Desferal dosage

Andy thank you so much for the appraisal..

Umair, I have had a MRI T2 scan and guess what!!! YOUR WRONG ABOUT ME HAVING PROBLEMS WITH MY HEART AND LIVER....

I DONT HAVE ANY IRON STORED ANYWHERE IN MY BODY!!! MY T2 SCAN SHOWS I HAVE A HEALTHY AND NORMAL HEART NO PROBLEMS WHAT SO EVER AND JUST BECAUSE I HAVE HEP C DOESNT MEAN I HAVE I HIGH LIVER IRON... ITS ALL NORMAL ....

I AM ALITTLE ANNOYED NOW!!!

NOT HAPPY, MY TRANSFUSION REGIME IS FINE THE WAY IT IS... I DONT NEED ANY LESS OR ANY MORE BLOOD..

I WAS ON DEFERIPRONE BUT DUE TO NEUTROPENIA FROM IT, I HAD TO GO ON EXJADE NOW. I AM DOING FINE WITH IT..NO MAJOR SIDE EFFECTS EITHER...

PRIOR TO L1 AND EXJADE I WAS DOING DESFERAL FOR 30YRS NON STOP THANKS TO MY MOTHER!!!

SO NO ONE IN HERE CAN EVEN SUGGEST OR THINK THAT I HAVE HIGH IRON STORES IN MY BODY..

I AM ALITTLE DISSAPOINTED IN UMAIR IN EVEN THINKING LIKE THAT...

SORRY IF I OFFEND ANYONE BUT I AM UPSET NOW AND MAD

 

Hi Smurfette,

Your mom has done a great job with your desferal, your iron levels are amazing!  I am glad that the Exjade is working well, my son is doing well with it too (so far so good..).  I wish you continued success with your chelation - you are a role model for other thals    I didn't even know that a ferritin level of 300 was achievable for a regularly transfused thal until I read one of your posts a few years ago.  I hope that I can do as amazing of a job as your mom has done. 

I think Umair confused your case with someone else's, in which the ferritin levels and SQUID, T2* levels didn't correlate earlier this summer. 

Smurfette, would you kindly share how many days a week and how many hours a night you used desferal while you were growing up?  Many people can learn from you as keeping the heart and liver healthy is the key in thalassemia. 

Thanks 

Sharmin



 

Sharmin 

Thank you!!!!

I used to wear my pump for 7 nights a week when I was younger, and when my ferritin down, we reduced the the days to 5 days a week non stop, I even used to wear my pump out too..

Having a ferritin of 300 is good and even lower is better.. I did get it down to 152 at one time 

To be frank with you, I have never had any heart problems in my life regarding thal!! As I said before my liver iron is good apart from having Hep C.

I am sure that you will do a great job in doing what ever you can for your son... See my mum was determined to give me a normal life as possible..

With determination and faith you can do anything and achieve anything...

Just dont give up or say i cant do this...

Take care

Smurfette,

Thank you for the inspiration and encouragement and the opportunity to learn from you.  After meeting people like you I do believe that anything is possible 

Wishing you the best of everything, always,

Sharmin

oh Smurfette ,
i wasn't talking about your hear ... i mean to say that ....

in Smurfette's case , i think she need's less Tx's or Iron is stored in somewhere else in er body ...

only this was for you ,,, and i want to mention that , we can't expect that only ferriprox will bring SF down .. we need to have desferal as well  to take SF to normal levels ....

then if i m not forgetting then i think i red it somewhere about someone else ( not you  )

as i heard that one of the forum member's SF were normal but when she had an SQUID test iron found in her heart, in a high Levels

if anything offend's you then please ignore that i mean't anything like that ,  you are talking about ..

Take Care
Umair

Hi smurfette ,
How r u doing .... i just read your full post ( first one in which you are a little rude ) ..
 .. hahahhaa. sorry i didn't say that in my first post bcoze i hadn't read your full post before replying first time ... i just red first 8  lines of your post and then sent first post in reply ...

you are looking rude... i feel that its realy funy hhahahaa ... wow ...

SORRY IF I OFFEND ANYONE BUT I AM UPSET NOW AND MAD

ther is nothing that offend anyone and for me  , nobody can offend me ...

hey if you read your post with emotional  rude effect you will have fun .. i realy enjoyed it ...

NOT HAPPY, MY TRANSFUSION REGIME IS FINE THE WAY IT IS... I DONT NEED ANY LESS OR ANY MORE BLOOD..

i dont think that i said your Tx regime isn't working fine ... well leave it all ...
 
it is  too long since i have faced something new .. soo its a good change for me .. you make y face smiiley after a long time  .. thanx smurfette ...    happening something new give's the intiative that we are alive ...
soo wats up ? .. are you doing well na ??   ...


Take Care
Umair

 Hehehehhehee who is  A little naughty an quick and react's realy fast ... Dont mind ...

Edited : hey you said to  me in a chat session on this siite that , Nobody can Offend you .. i did it , hurray i make the impossible to possible .... 

Andy,

During the trip my son's dose was increased from 500mg to 625mg. 

And Umair, just like Andy said, we were also told that the adequate dose of exjade is 30mg per kg of body weight, so my son is now receiving that dose because he seems to have tolerated the lower dose well. 

Sharmin

hi Sharmin ,
i will keep it remember when i will start Exjade . its realy usefull info for me ...

I started off with Exjade with the dose of 20mg/kg.1000mg/day was what I would take. But, I'm off it now due to low ferritin levels.


\peace/

That is awesome Sahil!  I am hoping that with the new dose of Exjade my son's ferritin levels will be low enough to get him off of desferal soon. 

I hope that your ferritin levels stay low - way to go 

Sharmin

bad news for me
I had my ferritin checked and it came out 9000 :s. last time (about 8 months ago) it was 7500. I am on combined therapy. I take 12 vials of desferals a week and 4 capsules of Kelfer daily. Oh and i have 2 pints of blood every 14-18 days. one thing that i am noticing for 2 years now that my urine usually doesn't change colour when i take chelators, does this mean chelators have stopped been effective on me? or does i need to increase my dose of desferal? someone plz guide me through this.

Dear Tariq,

I am sorry to hear that your ferritin levels are going up.  This should not be happening with combination chelation therapy.  Chelation therapy is usually determined based on your body weight and transfusion volume (cc of blood per kg of body weight).  I am more familiar with Exjade doses than Kelfer.  How many days a week and how many hours a day are you using desferal?  I don't think that chelators have lost their effectiveness on you.  Do you take vitamin C  1/2 hour after beginning desferal treatment?  You will notice the color of urine to be more red the next day if you take vitamin C with chelation. 

Because you are transfusing quite frequently, your chelation dosages may have to be adjusted accordingly.  If your ferritin levels are in fact an indicator of your actual iron levels then you may need more aggressive chelation therapy - chelating for longer durations is best - 7 days a week 12 hours a day - until the ferritin levels decrease.   Of course your physician needs to determine this for sure.  This is the advice we received when my son's iron levels were 2880 - and following this advice we were able to bring it down to 1320 within 6 weeks. 

Most importantly, as ferritin levels over time may be a good indicator of liver iron concentration - they are not a perfect correlation and can be misleading.  Therefore, if you have access to SQUID or ferriscan you will have a better idea of your liver iron.  If your liver iron levels are high then you should be on an aggressive treatment plan - and then re-evaluated every six months until your liver iron levels are within an acceptable range.  You should also consider having a T2* done to see if there is iron in your heart and if it has any effect on your heart function.  Don't worry, because chelation can reverse this effect. 

Please begin getting answers and chelating aggressively immediately, the free iron in your body is not good for your organs.  You should also be on antioxidants such as IP6 to offer some protection against free iron, also never go more than 24 - 48 hours between desferal as desferal will bind some of the iron and protect you from organ damage. 

You can also see the list of supplements which Andy has listed such as vitamin E to protect against oxidative stress.  With the increased chelation you will also need zinc and calcium/magnesium. 

Also note that if your iron levels are above 2000 any fever in the body needs to be treated as high iron levels can lead to infection.  This point was stressed to us while we were in Oakland. 

Best of luck getting those ferritin levels down Tariq,

Sharmin

Sharmin,
thanks for your quick response.

I take desferal in 8 hour infusions with 3 vials at a time. and no i am not taking vitamin c for sometime now because i can't find any good brand of vitamin c tablets here and i dont trust the one that are available. i think i will look for imported brands or may be Zaini can guide me what tablet is she giving to her daugher. Regarding Vitamin E, as soon as i heard from Andy from his Singapore feedback, i have order the tablets and will start using them from this week.

Regarding SQUID and T2, i will discuss with my physician about them and lets see if i have access to these tests.

One more thing, i was thinking that since havent had my spleen taken out yet, is this the right time to have spleenectomy to reduce my transfusions and hence slow down the accelerating ferritin levels?

Tariq,

In thal major it is not always beneficial to remove your spleen.  Is your spleen enlarged?  It is important to determine why your tx requirement is high.  If you are having hemolysis due to antibodies etc. then there are other lines of treatment that should be considered first. 

I think that the most important thing to do is to increase your chelation, it is a good thing that you are on L1 that will help to protect your heart.  Maybe Andy can guide you regarding the L1 dose.  I do think that it is a good idea for your doctor to increase the duration of your desferal infusions - because the duration is even more important than the actual dosage.  In some cases here patients are admitted and given 24 hour IV desferal if their levels are too high.  In your case I think that you should be on at least 12 hour infusions 7 days a week for a while because the chelating agents have two tasks to manage in your body: 1) Remove the stored iron from your body  2) Deal with the somewhat large/frequent iron coming into your body with your transfusions. 

Perhaps once the iron stores in your body have decreased, less chelation will be required to deal with iron coming 'in' form the transfusions. 

At the same time, try to find out why you are needing more blood - are you having increased hemolysis?  could the blood be better matched?  do you have allo or autoantibodies?  You should ask your doctor these questions and your doctor should speak with the blood bank.  Receiving fresh, well matched blood should make a difference.  In the case that you have antibodies, first you need a good cross match, then your doctor can try prednisone - if that does not make a difference then IVIG or rituximab can be considered (but this only applies if you have antibodies).  All of this should be considered before discussing the removal of your spleen. 

Sharmin

Tariq,

Your dosage of both desferal and L1 are too low. You should be getting at least 20 gm desferal in one week and your time is too low also. One thing that was verified for me at this conference is that it is better to spread that same amount of desferal over more hours because even though you take the same amount, by taking it for a longer period of time each time, it increases its effectiveness. Desferal only chelates iron while you are using it, so 8 hours is far too short. Minimum right now should be 12 hours/day, 5 days a week. Even better is if there are some days in which you can pump for 18-20 hours, because you are going to need to work hard to get your ferritin down. Believe me, if you get serious and work hard, you will reverse this high number. If you don't, well...we all know the answer to that. By the way, the reason I say this information was verified is because Shilpa has used this method for a long time with good results. She routinely takes desferal for 18-20 hours at a time, along with low dose L1. Anyone who saw her at Singapore will agree that she looks in very good health.

Also, why is your L1 dose so low? Do you have any problem with joint pain or low white cells?

Tariq, you need to work hard and we are here to give support. Let's work together to bring you out of this dangerous situation. We have seen what Umair has done and you can do this too.