Desferal for 24hour none stop???

I am using a graseby pump (old version). I bought it in the year 1889 and have been using it ever since. Haiker, I think what the others are using is a medis pump (they get it from the hospital right?). All the Thal patients in Malaysia recive the free pumps now.

I have seen the Chrono Pump. it is realy light and really small. but you cannot use the syringe that you are using right now bec it won't fit in the pump. You have to buy the special syringe that's made just for the Chrono Pump. About the price...from what i've heard it is much more expensive. And then you have to buy the speacial syringes too...so i have no idea on how much it cost. But if you are looking for good pump, i'd say Graseby is the one bec look how long have i been using them... 

That's a good question Haiker...about the vit C..I dont really know how long should i take it when using desf. For now, I'm taking Vit C 30mins after putting on Desf.

I have always read that you should start vitamin C 30 minutes after starting desferal. And Chrono pumps are wonderful pumps if you can afford one and as Nur said, you can also afford to buy the special syringes used. Graseby pumps are very dependable.

Hello Andy
I hope you are doing good, please can you send to me the pictures of the pump I willbe thanks or link of it

Qiji

Sajid posted a link to the Crono site some time ago.  http://www.intrapump.com/ambulatory/index.htm

I am using a graseby pump (old version). [bgcolor=#f5ff00]I bought it in the year 1889 and have been using it ever since[/bgcolor]. Haiker, I think what the others are using is a medis pump (they get it from the hospital right?). All the Thal patients in Malaysia recive the free pumps now.

Hi Nur ,
if you dont mind may i ask somthing ?? . that is , is pump was available in 1889  .... hehehe

dont mind , just kidding ,  please ignore it if u don't like it ....

umair

hi nice friend,

Oh...i've made a mistake ...it should be 1989  he..he..

thanks for letting me know. It would be a great history if the pump was available since 1889.   

Currently, my daughter is six years old. When she was 4+, her SF rose upto 4700. That had happened because of inadequate level of chelation that she was getting.

At the point the Doctor had advised her to be on continuous Desferral (in IV) for seven days. That perscription was also ratified by Dr. M B Agarwal of Bombay. We found it very very difficult to administer for seven days continuously as it was affectingher normal day to day life and her veins were also under pressure. So, as per consultation with the paediatrician we started giving her Desf'l in batchers of 60 hours after her each transfusion. I got ratified my decision on administration in this site also. I am sure it will work for your child as well.

It worked like a miracle for her. Thanks to Andy, now she is on Exjade.... that had kept things under control.

This site is the best possible resource on Thalassaemia that I have ever come across.

Hello..

my doctor told me to use my desferal for 24hour none stop for the hole weeks. i just want to find out if any of you guys here use desferal for 24hour none stop..

what is the risk?? will i have any complication later??

This is really wonderful news. I am so happy that her ferritin is now under control. 60 hours in a row may sound extreme for desferal administration, but its effectiveness cannot be denied. I am hopeful that with the lower price exjade products on the market now in India that things will be much more manageable.

I want to add that without the help of members of this group, I would not have been able to help you as I did. Those who donated Exjade and the money for postage deserve a big thanks.

60 hours after bt sounds as a good thing. It's much better then desferal during bt's from my kind of view.
I'm glad your daughter's ferritin is under control .

hi friends when i take Vitamin C

A small dose of vitamin C (250 mg maximum) should be taken within 30 minutes of starting desferal as this releases more free iron which can then be removed by the desferal. Do not exceed 250 mg of C daily when iron overloaded.

one more thing .. i thin, it will b better to take in divided dose .. for e.g when u r going to tkae 250mg of vit-c dont take it once a day but divide it in 2 doses of 125 and 15 mg after .. first one 125mg dose take within the 30 minutes of starting chelation with pump .. and 2nd 125mg dose take at after a few hours to first dose ..... ( Andy, please correct me if i m wrong ) ....

Regards
Umair