Chelation Tips. What do You do to Make Chelation Easier?

Hi everbuddy ,

I use 3 vials of desferal in 15ml of water ( 2 in 10 and then 1 in 5ml at a time  ) .. in 21-24 hours.. i put it a little before the sleep ( 2-3 hours before ) .. i take the pump with me to where ever i go bcoze i made the chelation very long , bcoze its will be as good as it will be long ,...

about mixing desferal , i asked to my doctor that may i mix 3 vials in 10ml she said no , the i asked  in 12 and she replied mixing desferal in less water will make the solution thick , and thick solution could pain and react in cyst , also the  thick solution willl take more time to desolve in the body, untilll it desolve it will remain like a cyst and could be painful experience .... but the light solution will desolve quickly and will not left any kind of pain and llumps,bumps and cyst ....

Best Regards
Take Care
Umair

hi Umair,

its true, the more u dilute the dfo solution the less painful it is... my friend at the conference asked two doctors (one of them i think was dr. fuchereon i think) if it was any less effective to dilute 3 vials in 10ml.. but she was told that it isnt and the only thing is that it is very painful...

but anyway, we dont really have a choice... all the syringes we are given are 10ml ones and if we want more we have to buy it on our own.. no one wants to do that, so we have adjusted to this level. I want to try 4 vials, but i dont want to mix 4 vials in 10ml..

One thing I learned at the conference reaffirmed what Shilpa had discovered on her own. If you dilute the desferal more and take it for a longer period of time, as much as 18-20 hours at a time, you get less irritation and you chelate more iron. 2 gms of desferal taken over 18 hours will chelate more iron than if the same amount is taken over 12 hours. The goal should be to get as close to a 24 hour a day chelation regimen.

Maako, why only 10 ml syringes? Why can't they make 20 ml available also? Helping patients chelate for longer periods should be a goal that is supported with adequate supplies.

Andy I really have no idea why.. I have raised this issue quite a lot of times.. not only me, several patients and parents.. they once gave a lame excuse saying that 10ml is the syringes which could be fit into the pumps... and its not like they dont know there are 15, 20, even 30 ml syringes which could fit the pumps.. 

Hello to all,
I'm on Asunra..m taking
3tabs. of 400mg and 1 tab of 100mg

Hello,

I'm on Exjade. I take 3 tablets of 500mg and 2 of 125  a day. I take them when I wake up and I wait for about an hour before having breakfast since I've seen that, in my case, the more I wait before eating, the more iron it chelates. I know it is not a very scientific data but it works to me so I've got used to wait and I'm doing fine.

Yours,

Laura.

Hi, I dont like Exjade either. L1 doesn't help and deferal almost killed me (I coudln't breath anymore). Pharmacist told me that the doses could be too high. I think he want me to try it again. My doc doesn't want. I? I'll give Exjade an other try. I hear so many good stories about it. The only thing I hate is that my results of tests are blocked. Doc decided to have them every month instead of every week. We are almost a month furter, and I still don't get them. Ofcourse I give them all, but then i am the sorehead.
With Exjade I've lots a lot of kilo's, became dizzy all the time, nausea and I even lost my sight for 30 minutes? They told me that it wasn't from Exjade, but I am sure it was. It happend only once.

At the moment I don't have breakfasts anymore. I can't eat after Exjade in the morning. If someone has a tip what I should do or what I can try to eat; Let me know it!

My dose: 500mg
Next monday: 625 mg.
Every two weeks plus 125 mg.

The doc told me that you can take 40mg - 1 kilo.
My weight is at the moment 45 kilo's so I will reach my end level in 2009.... pffffffffff

And yes, my ferritine is going up: 2100 to 24000

In oct 06 it was 1200. I cant even rememberand I cant even believe it!

Owh: I used the easypump for several years. Our guests arrived so I can't search for a link now.

Hi Maryoom and Dore

It is the first time to hear that you lose weight when you take exjade, but is the reason for this increased metabolism or you just don't eat much??

From many posts, i learnt that the administration of exjade should start gradually until the body get used to it then the dose is later adjusted.

Also i learnt that exjade should not be taken by people who have troubles or illness in the liver cause they have high risk of having side effects

What is more important is that ferritn goes up when you start exjade because overloaded iron is released from the tissue in the blood then exjade starts taking it outside the body . This could take up to a year ntil the ferritn starts to decrease so, you have to be patient with exjade.

Dore, i also learnt that  the dose of 20mg/kilo is a maintenance dose and 30mg/kilo is the dose for effective chelating so i guess 40mg/kilo is a big thing to start with especially that your ferritin is not that high.

manal

well upper arm works best for me as i don't feel any pain there and regarding lumps, i use ice for that. I put on pump before leaving for work in the morning and it finishes up by the end of the day (10-12 hours). Sometimes my colleagues hear the swinging of pump motor and they wonder where that came from  and i tell them maybe my PC is making noises  as they don't know about me wearing a pump.

Also i take Kelfer 500mg 2 after breakfast 2 after lunch and 1 after dinner.

- losing weight:
Sometimes it's hard to eat. I got this problems most of the time is coming in sight.
I can eat everything what i want, but nothing will happend. When I took L1 (9 pills a day) I felt hungry all day long and I gained weight. A bit too much, so I can stand those trouble with Exjade for a while. I lost 4 kilo's so far.
Don't get me wrong: there are times that I eat a lot! I prefer vegetables and fruit rather than sweet and chocolate. That's an abnormality ;)

They didn't test my kidney and liver when I had those bad side effects. I don't know what happend exactly with my body. I only knew that it ruined a summer break

I know that your ferritin goes up in the first 3 months when you are taking it. I didn't know that it could take more than an year before it works  We'll see where the ship comes. If it won't help in the future I will see of I can start dating  desferal again ;)

My doc told me that he heard recently of Novartis that you can also use 40mg/kilo. It seems a bit too high for me..

Offtopic: Asurna sounds better than Exjade 

Tariq, that's funny.   But, why don't you tell them not about the pump?

MaryoOm,

Although Exjade is a very well studied and researched drug, you are right - long term data is not available.  The long term effects and benefits of desferal are well known.  Desferal is also known to be effective, but with exjade it is believed that a few people do not benefit. 

The effects of exjade on any given patient depend on how much iron is stored in the organs.  The chelating agents work in different ways.  Exjade and L1 actually enter tissue in organs and extract iron.  This is the reason why ferritin levels can rise when patients begin using Exjade - the amount of rise seen and how long it lasts depends on how much iron is stored in the organs.  Desferal is not able to enter tissue in organs very well, but it efficiently binds and removes free iron from plasma. 

Perhaps this is why, under CAREFUL WATCH OF DOCTORS, combination therapy works so well.  When used in combination the chelators can have a synergistic effect.  As in my son's case, the exjade removes iron from his organs and releases it into the plasma (this is where the typical patient would see a rise in serum ferritin) - and the desferal binds and removes the iron from the plasma (which is why he did not have a spike in serum ferritin after starting exjade). 

I do believe that patients who have years of iron overload would benefit from using exjade predominately, and using desferal intermittently (a few times a week) - but very careful monitoring is required - blood and urine tests should be done every 3 weeks. 

Exjade can be very hard on the stomach, especially in the beginning.  For this reason exjade should be started at a very low dose and raised slowly.  If symptoms seem to be related to exjade, exjade should be either stopped or reduced - and then started again slowly.  The only way to really monitor the effectiveness of exjade is through ferriscan or SQUID - SF is not always a good measure. 

Sharmin

but anyway, we dont really have a choice... all the syringes we are given are 10ml ones and if we want more we have to buy it on our own.. no one wants to do that, so we have adjusted to this level. I want to try 4 vials, but i dont want to mix 4 vials in 10ml..

Hi everybudy ,
i also use 10ml syringes . as i said :
I use 3 vials of desferal in 15ml of water ( 2 in 10ml water in 10ml syringe and then 1 vial in 5ml water in another 10ml syringe at a time  ) .......

its not difficult to replace the syringe to another , you may  dilute 2 desferal in 10m syringe and when it finish you can attach another new 10ml syringe.  its how i use to take 3 vials 15ml of water by using 10ml syringes .... i hope i explained it clearly ....

take care
Umair