Desferal not working

Andy and Joanne could not put it better. Everything that is said in this thread is said right, not to terrify you but to put you on guard and make you realise where your priority should be.
When I started desferal my ferritin had reached 8.000 and back then I was not aware of the consequences. When -years after- I realised the danger I had been in, I was so scared and thanked God I had not been dead back then because the truth is I was really close.

Nothing else matters more than your life and your good health and both are in great risk right now.
Please understand that and act asap.

Lena

I had a T2* done August 2010. it showed normal LV/RV/LA/RA size and function. There was significant iron overload in the liver and the myocardium, but otherwise, the test was unremarkable.

Do you have the T2* score?

I have a copy of the report, but I dont see a score on here, what am I supposed to be looking for?

It will be a number between 1-40. You should see something that refers to Myocardial loading or Myocardial T2*.

I have hepatic T2* 2 ms and myocardial T2* 8 ms

8 is considered as borderline severe cardiac iron loading. 2 is just above severe loading in the liver. This does need immediate attention. I would again suggest contacting Dr Thompson at Chicago Children's. The example shown below was from a patient with mild iron loading in the liver and a safe (above 20) heart range. This patient has been on combination chelation for years using desferal and Kelfer (Ferriprox, L1, deferiprone) and was 40 years old at the time. The scales at the bottom are the reference scales. Do not be mislead by the term moderate, as moderate does need attention. For reference, our member Nur, went from 8 to 20 in two years of 12 hours desferal 7 days per week. Her chelation routine was a faithful 7 days per week during this period.

Archana,

I am so happy to see you trying to understand what needs to be done. You don't have to give up all what you want to do. You just have to understand "You can reduce Iron Overload by taking proper measures".

As your cardiac loading is high, I think you can make a case of Compassionate Use of Ferriprox in the US. Please talk with your doctor about it and as Andy has mentioned your best option is to talk with Dr. Thompson at Chicago's Children's Hospital - that will do you a world of good and take you to the best steps to be taken.

Hey guys,

just wanted to post an update. I talked to my doctor and she said that since we just made a change in my chelation this month, we can't make another one until 2-3 months. But she thinks that my ferritin should begin to decline, and if we're still not happy with how fast it goes down in a couple months, shes going to put me on the Exjade as well as the desferal. I suggested the ferripox, but she says that she has had better and safe results with an Exjade and Desferal combination. So we are going to wait for a few months and then probably add the Exjade. I know its not ideal, but it makes sense to only make one change at a time...

Thanks for all the support,
Archana

Hey guys,

So its been a while, I thought I would post an update. My doctor called me a few days ago, my ferritan levels were 7403. After peaking at about 11000 at the end of last year/beginning of this year, they finally started dropping a few months ago and have been steadily dropping. I about started crying while walking in for my transfusion, I was so happy. I know I still have a LONG way to go before I'm anywhere near where I need to be, but I'm on the right path.

Right now I am taking 2000mg/8ml over 8 hr infusion on desferal everyday. I am meeting with my doctor in the next month or so and am going to ask about starting Exjade at a very low dose to target iron in the heart, because I know thats a major concern right now. My goal is to have my iron completely under control by the time I graduate (06/2012).

I want to thank everyone here and send a special thanks to Narendra and Andy, who really brought the seriousness of what I was doing to myself to my attention.

Thank you everyone!

Any possibility of taking desferal for longer periods than 8 hours at a time? I would also suggest diluting it more. The longer you can take, the better the results will be. Desferal and Exjade can be used together, although I still recommend the Ferriprox/desferal combination, as it is most effective in the heart.

I've never thought about diluting it more. Thanks for the suggestions, I'll bring them up with my physician when I next meet with her. I believe I'm maxed out on the dose I can get on desferal so I guess the next progression would be to increase the infusion time.

I know that my physician has used the ferripox/desferal combination before on previous patients who were refractory to desferal/exjade. I believe that my physicians hesitance in using ferripox is that I had severe nausea, and diarrhea with the exjade and so she is hesitant to start me on the Exjade or the Ferripox because they are both known for having nausea, vomiting, and diarrhea as side effects. I will, however, bring it up with her again and discuss the potential use of simultaneous antidiuretics to manage those side effects.

Thanks!

The recommended amount of water to use with 2g is 20 ml. With your iron level you really need to be taking for longer periods at a time. Even if you could manage a couple days a week when you took at least 12-14 hours, it would make a difference. Honestly, I think you need combination therapy to get the iron load under control. You would most likely be eligible to get Ferrirpox in the US. The biggest problem is that desferal only chelates while you are taking it, so for 2/3 of the day you are getting no chelation. For high iron loads especially, the chelation goal should be as close to 24 hours per day that you can get and this can be accomplished with combination therapy of desferal/Ferriprox or desferal/Exjade. Even a low dose of Ferriprox daily would help if added to the desferal. I know a patient who has used desferal and kelfer (Ferriprox) in combination for years. She can only take 1/3 to 1/2 the normal kelfer dose daily due to joint pain and she has to stretch her desferal simply due to the cost of desferal, but she has managed to keep her iron load under control and has a T2* score of over 20. She dilutes the desferal even further and takes for up to 18 hours when she takes desferal, which is only a few times weekly at most. Although she created this method on her own, I learned that this method has since been tested and it was discovered that taking the same amount of desferal over a longer period of time will definitely provide a better chelating effect, even though the same amount of the drug is used. The length of time taking desferal is very important.

Archana, its so good that you have taken measures to improve your health. I can imagine that thal is not something u asked for and that keeping up with treatment can sometimes be a burden. I ask u to please keep this thought in your mind as u make your decisions always....i know u do not know the children whos parents spend days and nights on this forum...but remember they are looking up to u. Most of them r young and don't know what's to come, they need support and positive results from adult thals.  Even more, the children aren't the only ones looking for hope and inspiration but the parents are too.  We look to older thals for guidance, hope and reassurance. You r our glimpse into the future....u r the role models we want for our children....u r the inspiration our children need to be succesful with their future health.

I know its deep but I just read this thread and I was amazed at how much u sounded like me just a few years ago. My health was always put on hold but I also didn't have thal major. Now I think of my son when I make a decision not to take a test, or take my vitamins.. Or anything of that nature.

I hope all this makes sense....I'm so sleepy right now that it is hard to focus on my mobile screen!!!

Cari,

Thank you so much for you kind words, I can only hope to live up to your expectations. I've made mistakes, a lot of them. Now I am trying to make up for them. I'm willing to do everything I can to get there. You think of you kids, in a way I do too. I don't have any yet, but I want to. So I need to keep myself healthy in order to do so. I also think of my parents who have supported me in everyway they could. It may no have been what I needed but they tried to do what they could and so now I try to be the best daughter they could have.

Bring a patient all my life has motivated to to help others which is why school is so important to me. But I have realized that if I don't take care of myself I wont be able to help others so that also motivates me to keep on top of things. I can proudly say that in the past five months I've only missed 4 doses of my desferal due to reasons beyond my control.

Again thank you for your show of support and the additional motivation you have given me today to take care of myself.

Archana