iron absorption(Desferal users)

:::this post is not intended to be a joke, but should be taken lightly:::

hello everyone! hope everyone is doing well and is enjoying the day!

i was just thinking of a 'new method' of absorping the excess iron in the body and getting rid of it..i guess this is for desferal users mainly.  maybe in hopes of bringing ferratin levels down, and being healthier overall.

**CAUTION******WARNING*******CAUTION******WARNING******CAUTION***
this is by NO means something that should be tested on yourselves!
please share this information with your doctors FIRST!
i am NOT a doctor
********************************************************************
i was thinking to split the normal dose of desferal taken, into two syringes, and placing one injection site on my lower body, and the other on my upper body (of course 2 pumps would be needed for this).

maybe if the medicine were to disperse widely around the body..the effect of absorption would be greater, as opposed to working it's way around the body from one injection site.

i am going to discuss this with my doctor in this upcoming week that i am going to see him.  i also hope to discuss other ways of using the Desferal in which i have been thinking about.

hope to get some answers, and will keep you posted most definetly! 

Well sorry to dampen your thoughts...But I dont think that would be a good idea!!!

1st: You will get a sore body using it that way.

2nd: You ferritin might jump up and you will probably complain that its not working.

3rdly: It will work the same way as you would be using it at nite...

Thats just my opinion, but good luck if it does work...

Stick to what you know best and what is best for your body too...

You come across other problems doing it the way you think might be best..

Since desferal has such a short half life (no more than one hour), it is only effective while you are using it, so the best way to increase its effectiveness is by lengthening the period in which it is taken. Most patients take desferal 10-12 hours at a time. If ferritin is high and one wants to get more effect from the defseral, it should be taken for a longer period, such as 16-20 hours. This can be accomplished either by taking more desferal overall, or by diluting the same amount of desferal with more water so the infusion lasts longer. Patients who do not have insurance sometimes use the latter method to get more effectiveness out of the desferal they can afford.

I agree with Smurfette that if you use two sites it will double the irritation and pain. In fact it might eventually discourage one from using desferal because of the pain association.

i was thinking to split the normal dose of desferal taken, into two syringes, and placing one injection site on my lower body, and the other on my upper body (of course 2 pumps would be needed for this).

OUCH!!!??!!!

 Hello red.
 
     This is Eleni from Greece. I am 46 years old and my ferritin level for the past two years is below 100.
      I reached that point doing combination therapy of desferal (10 vials per day in up to 60 ml water for five days/week) together with ferriprox. In 4 months from 1500 I went down to 45 and since then I keep up to an under 100 level with ferriprox only. So in my opinion if you can take ferriprox as well, do it. Together with desferal it works miracles. (Not ex-jade.)
If this is not possible keep with desferal and try to make it long. There are some silicon balloon infusers we use here in Greece by Accufuser.These make the use of more desferal possible, because you can have water up to 60 ml which means up to 12 vials desferal. If you can find it, use it.
Otherwise keep up with normal desferal procedure, ie: 6 vials in 20 syringe water, as many days as you can, depending on your ferritin level.

Hi Eleni and 

I am so happy to hear about your success with chelation and I want people to realize that with hard work they too can have low ferritin and most importantly, live. I hope people take note of your age and realize that survival is possible for thals as long as they comply with treatment. I know many thals in Maldives who just don't think they will even make it to 30 years old. I think you are a great inspiration to all. 

Hi Eleni!
Yes, what Andy said about you is surely right!  Thanks for the great advice!  I have never heard of ferriprox, but am going to start research on it soon now that you told me about it.  I've heard of the balloon, but never thought for it to work that well, thanks for that too.  As for your ferratin...WOW...Bravo!  Your like a wonderful dream!  COME TRUE! hah     I am going to ask my doctor about your method of desferal and see what he says.  It sounds good. 

efharisto!
(i'm not greek, but i took a couple lessons)

Ferriprox is not available in the US, except under compassion programs for patients who can't use desferal. It is also called L1 or deferiprone and in Asia is called Kelfer. I recently posted about why it is not available in the US at http://www.thalassemiapatientsandfriends.com/index.php?topic=1317.0

Hi again Andy,

       I think you do a great job with this site. In fact I think TIF should have a similar site to advise thals and make them chat. Thank you for your kind words and yes, I have tried hard to reach this point. It needs to be stubborn, to listen to your doctor and last but not least it absolutely needs a doctor who knows. Because I am afraid so few doctors know what to do and I beleive a thal has to check his/her doctor and get personnaly informed and be aware of things and treatments.

definetly lena.
i agree with you when you say you need to have a doctor who is informed as well.
the trouble here is, doctors always seem to 'over-rule' me.
when i give them my viewpoint they become agitated.
well atleast this one doc i have.  aw, i like him cuz he's real nice too and everything..
but he kinda briefs our convos.
and it's not like i havent voiced my concerns.
i dont know. i'm gonna talk to him this week about everything..so hopefully itll change.
but in the meantime..lena, do you have any pointers on how to effectively communicate with your doctor???  or what you should communicate to him/her?? i'm kinda lost.
thanks alot again.
 

Red,

 
1. Do not choose a doctor who has not been working with thals.He doesn't know the right treatment. Preferably a haematologist, although there are physicians who have worked with thals.
2. Get informed yourself. From magazines, if there are any, from sites like this, from other thals.
3. First know and sum up in your mind what you need from the doctor.Be precise with him :treatment, tests, everything.There is no perfect way to contact a doctor. Do it your way, he is obliged to listen to your demands carefully. Talk to him about your desferal concerns and if you should increase the dose. In case your ferritin is high, that is.

I cannot think of anything else. Just be precise with what you want. Good luck!

Thanks again!