IV desferal

Hey Little A,

I am furious the refree didn't see your goal  , well better luck next time dear  .

And good luck for the blood test.

Zaini.

Hey Little-A ,
Buddy , for me , you're the winner of that game , bocze you scored the goal , its refree's fault that he were late to witness the goal ... soo to my point of view your team won by 3-2 and you're the match winning goal scorer of the day .... Best of luck for the next time ..

Sharmin , i hpe his Hb will b fine . please keep updating us ..

Best Regards
Take Care
Umair

gud luck 4 da test lil A!my prayers r wid u!
 

Thank you Zaini, Umair, Pareeshay and Dore 

My husband just left with little A to have his blood test, I hope that his hg is above 10. 

Dore, goodluck with your blood test as well 

Sharmin

Wow ..... Rain of tests ..... i  just came back to home after giving blood sample for CBC, LFT and S.Fe ..... what are you asking when i will recieve my reports ?? , mine reporting date is thursday 19 march just a day before the visit ....

I hope that his hg is above 10. 

Sharmin , I hope the same for him ... he is in my prayers ....

It's my turn tomorrow

Dore, Godd Luck for tests .....


Best Regards
Take Care
Umair

I am still waiting for little A's results - they are taking a loooong time today.  Good luck with all of your tests Umair 

Sharmin

hemoglobin in third week is 99.    I am glad that he is getting ritux this week.  Although his tx requirement has decreased considerably with the first ritux treatment, it would be nice if he could go 4 weeks with 15cc/kg. 

I hope everyone else's blood test results are good!

Sharmin

Sharmin,

This ain't that  bad? do you think ? and hopefully with second round of ritux he'll be back on 4 weeks transfusion schedule. Good luck  .

Zaini.

Zaini,

You are right, it is not that bad - which I am quite happy about.  It shows that ritux is effective for him.  The docs in Oakland felt that he was getting too much blood (about 540ml) every 3 weeks and that is too much.  If the ritux works well now then he can get 405ml every 4 weeks which will make it easier to get his iron levels down.  This way we can reduce, or even eliminate his desferal.  Right now it is taking exjade & a lot of desferal to keep his iron levels in control.  I hope that it works!

I hope that little Z is doing really well!  Is her cold all cleared up?  Our doc said that little A had rsv and that is why it lasted so long. 

hopefully with second round of ritux he'll be back on 4 weeks transfusion schedule. Good luck  .

  Thank you 

Sharmin

Good luck with all of your tests Umair 

Thanx Sharmin sis  ,
its Good to hear the Hg report of Little-A , i hope his gap between Transfussions will increase  soon ... Good Luck Little-A .. Wish you all the best

Best Regards
Take Care
Umair

Thank you Umair.

Little A has his tx tomorrow and ritux on Friday - I am a little nervous and praying that it goes well. 

Umair, I hope that your reports come back with good results too.  How is the IV desferal going?  I hope that your stomach issues have cleared up and that you are taking IP6 now. 

Sharmin

Wishing everything will go fine with our little champion,little A

manal

Umair,

Why did you start on IV Desferal? How're your SF levels now?
I used to take IV desferal of 5g/24 hrs (10 500mg vials) of continuous infusion. I'm now on 2g/10-12 hrs (4 500mg vials) SubQ. I periodically go in for IV infusions of 4g/24hrs. I weigh about the same, too. Generally, you can take more desferal through the IV than the SubQ. I believe for our weight, desferal of around 8g/24 hrs is toxic. Anything below that should be fine but it's not recommended to go THAT high on dosage, especially if you're not much iron overloaded.

What pump are you using, Umair, and are you getting it through the peripheral IV? If yes, how does your skin feel around the site? I usually can't take desferal in peripheral IV for more than 48 hrs at a time. I get a big lump and a lot of pain around the site which takes about a week to fully heal. I also get a lot of irritation around my SubQ site.

In addition to using Solu-Cortef with the Desferal when used Sub-Q, any other suggestions on cream(s) I can use post infusion to help with irritation and to help diffuse desferal more quickly, so, I can use the same site again faster??

Best of luck to little A, Umair, and Dore!! I didn't know too much about our Little A's talent, he's amazing!! Keep up the good energy, little A!!

Regards,
SF

Sharmin ,
Best of Luck for Little-A's Tx and Ritux ( All The Treatments ) , ...
My Reports not arrived in Lab yet , hopefully that will arrive at 1900hrs ( its 1700hrs ) , as the reporting time starts from 1900hrs , i m a little confused about the results ( e.g.. wat would b my S.fe) , but i mhopeful that it will below 1500ng , .. Thanx for the good wishes .... Always praying for Little-A ....

SF ,

Why did you start on IV Desferal?

Buddy ,  i started IV bcoze i was having symptoms of Congestive heart Failure, soo Andy and all other told me to Start IV desferal bcoze IV desferal remove's the iron from heart more effectively/quickly , soo i started IV contineusly for 63 hours ( almost 3 days ) , ... i wanted to complete 72 hours but i was feeling a little ( very little ) lump on my arm , i felt that it is begining of swelling so i decided stop it just before reaching to the mark of 3 days ... and in those 63 hours i took 12 vials Desferal of 500mg ...

How're your SF levels now?

According to my last S.Fe Report it was 2330ng , and i havn't recieved my latest S.fe report yet . You can read all the details of my Chelation plan under this thread , here's the link :
http://www.thalassemiapatientsandfriends.com/index.php?topic=1689.0
its a pretty long thread soo i m wuoting a few thing to that but i will recommend you to read completely bcoze i think it would be helpful for youu to understand the complete pic ...

since Janaury 2009 when my S.fe was 2330ng i started more agressive chelation plan, that is : 
i used to take 6 days chelation for 24 hours in gap between 2 Transfussions (12 days ) and 3 vial of Desferal everyday .... last 4-5 times i increased the no# of desferals from 6-8 for the same time ...

Generally, you can take more desferal through the IV than the SubQ. I believe for our weight, desferal of around 8g/24 hrs is toxic. Anything below that should be fine but it's not recommended to go THAT high on dosage, especially if you're not much iron overloaded.

well, i m afraid of desferal's toxicity and side-effects soo m pretty much carefull about it , i first increased the dose of desferal when i was wearing Pump (IM) , i used to take 8 vials and 40ml water for that , i havn't got any lump on the site of desferal but site ( only where the needle was inserted only that area of 2-3cm ) was hardened for couple of days .... i used thigh for that chelation day ...  but that wasn't soo disturbing , next day i did the same on second thigh after that i did the same on belly ( on belly i reduced 1 vial of deesferal bcoze i m afraid to have any kind of toxicity on belly but its ok for thighies ) for next time i did the same on arm ( my arms are little skiny so i reduced the dose to 6 vials ) and after all i turned again to 1st thigh and that was pretty ok and ready for chelation ....

What pump are you using, Umair, and are you getting it through the peripheral IV?

I m Using an Italian Made Pump, Infusa-T Maker's Medis :  http://www.medis.it/t.asp  ...
No , i m not using any peripheral IV/Port like things ..

I get a big lump and a lot of pain around the site which takes about a week to fully heal. I also get a lot of irritation around my SubQ site.

once i asked to my doctor that may i mix 3 vials in 10ml water she said "No , it will make solution a little thick and that solution will panitrate very slowly in subq , and you are also complaining of cyst at the site of desferal after having chelation " soo i think more water less thicker solution is the answer for your this quuestion ( i m talking about subQ/IM Desferal ).

In addition to using Solu-Cortef with the Desferal when used Sub-Q, any other suggestions on cream(s) I can use post infusion to help with irritation and to help diffuse desferal more quickly, so, I can use the same site again faster??

i never used any cream or spray on the site of desferal ( before inserting needle ) , but i heard some people used to apply Emla cream before inserting needle and some people used to apply Vitamin-E cream to avoid pigmetation on the desferal site ... here's  a thread regarding your this question please check this :
Chelation Tips. What do You do to Make Chelation Easier?
http://www.thalassemiapatientsandfriends.com/index.php?topic=132.msg629#msg629
secondly,  i want to ask that ,for wat solu-cortef used for and wat is the function of this injection , i heard about this injection to staff (nurse ) once i had fever during Transfussion , she told my bro to bring this injection to treat fever ... please do share if you know anything about this injection ...

I hope i answered the questions, if i missed anything please let me know , i will try my best to answer,
don't hesitate to ask abt anything you want to know , Take Care buddy ...

Best Regards
Take Care
Umair