especialy to Andy question abt chelation

You can not only beat with age and knowlegde, but also with chelation! ! Yes, your eyes are working perfectly. I decided to quit for a while. The conclusion so far is that it did not cause the pain. Now I want to see of it has any influence on the pain after tx. Possible not, but we must know it for sure. Pain: I take meds against peptic ulcer. Though we aren't sure that it is a peptic ..... . So I really hope you are able to show my ferritin how you really act like the bravest ferritin!!

Good luck!!!
Ps I hope the knee pain will soon be gone!!!!!!

Dore,
i hope you will get well soon and you will be feeling fine . i m sorry to hear abt pain you're going through ,
ulcer : i have suffered to it , i was on zantac for a long time , couple of years ago ( yeah , exactly when i was on wheelchair and a lil after  tha also ) , my doc discused 2 possbilities for that Ironn & Sugar levels , i dont know where it was exactly bcoze nobody told me that , .... but it was in lower left side of my tummy , eyakh wat a bad time that was .... thanx for the wishes ...

knee ache : almost disapeared but i m stil carefull and on rest ....

Best Regards
Take Care
Umair

Zain Sis,
Thanx alot Sis,   

Best Regards
Umair

Edited : if i failed to get 21 commetns within 21 days , then i will start thinking....... you know i will start thinking wat  

i m still on my stance ,
Q. wat i said ??
A. yep , i said i will start thinking ,

so, i m thinking now Hummmmmm  ... .hummmmm  .... hummmm ..... hummm ... hummmmm  .... hummmmmm  .....

haha ha   i m not gonna do something just only thinking 

Thanx for the lots of Comments

Best Regards
Umair

Hi All ,
Back to the toic of this threa :
i just removed the Canula (a kind of needle that used for IV injection for long period ) after having a complete week of IV desferal at home , yup straight 8 days 24 hour chelation . i administrated that at home after getting pricked the needle from a male nurse who work's at our Family Doctor's clinic ... here's the complete scene ...
at the night of friday 16 may i went tothe clinic of our faily doctor to get canula pricked from the old staff member of that clinic  bcoze he is good at pricking canula ... i went there and after getting pricked the canula i came back to home and had 40 desferal vials in just 8 days ( a whole week ) at home , i administrated desferal on my own .. i kept the canula running 24 hours a day to avoid clots and blockage in the needle .. that's why canula was still in fine running condition when i decided to remove ( BTW, i removed that canula ) ... i never been admited in hospital for only having desferal/chelation   ... i always managed that at home after getting pricked to nearest clinic ( our Family doc's clinic is near by our home ) .... i dont like to stay at hospital for only this hehe coze according to " an apple a day keep's doctor away, but if the doctor is cute forget the fruit " and  there's no cute doctor there at the nearest hospitals   ...  anywayz, it was 4th or 5th IV sessiion since january  .. i started IV desferal in january when 1st Andy and a few other members sugested me to start IV desferal bcoze i was having the symptoms of Congestive Heart Failure  ..  i tried this and found that this method is very good at quickly lowering iron level .. you can read all the story abt previous sessions and Fe test results in previous posts of this thread ...

OKEY , now about how i managed it at home  :
as i know that my daily Desferal dose is 5 vials a day  , i kept the drip runing all the day on slow rate to infuse exactly 5 vials in exact 24 hours , 
e.g : i started chelation at 11 pm i will take only 5 vial untill 11pm next day and then when first day's dose got finished i attached the other drip for the next 24 hour's chelation ...
its easy and same nurses managed that at hospital , but for the people who have the history of alergy to the desferal i will recommend for them to don't try this at home ...

i hope i discussed the all aspects and explained everything abt administrating Desferal at home , if i missed something then please let me know i will try my best to answer that as well as i can ...

Feel free and dont hesitate to ask if you have any questions in your mind , do ask that if you have any ..

Note : i m saying this again , dont try this at home if you have a history of Allergy with desferal , and dont try this if you're not sure you can do it ... i never experienced any side-effect of desferal nor reaction of it , i think that's why it is fine for me to do this at home .. but again saying this IF you have any side-effect, allergy or reaction history to desferal then prefer to do this in provision of your healthcare provider ..

Best of luck for chelation to all of you :
Best Regards
Take Care
Umair

Well done Umair, when will you check your ferritin??

manal

Umair,

Thanks for an excellent post. This option makes IV desferal a possibility for many. As we have seen with you, this will reduce ferritin faster than anything and the convenience of being able to take the IV home allows for minimal interference in one's life. While this method may not be good for younger patients, it should be seen as a real option by those having trouble getting their ferritin down to safe levels.

Thank you for this very useful post Umair - I agree I think that older patients who have trouble lowering their iron levels will greatly benefit from this. 

Nice to see you making so much progress.  Good job, keep it up!

Sharmin

@ Manal, Andy & Sharmin ,
Thanx alot for the complements , yeah its easy for the old thals to do IV chelation at home if they thinki they can manage it ,, and this is wat that show's " older thal know almost more than doctors abt this kind of stuff and  know better than the nurses how to manage needles and this kind of stuff"  i believe that we (old thals) have spent all the life doing and experiencing these thing so we know better than the nurses ...  we can do it better ...

"They succeed, because they think they can." (Virgil)

@ Manal,
i m plananing to test Fe level on tuesday, i wanted to give the gap between IV session and the tests thats why i planned that for tuesday ... i hope that results will be better but at  the same time i know that wil be not superb as bocez i missed the whole week dose of Ferriprox during this ... but still hopefull it (IV Desferal) will show its effects ....

Best Regards
Umair

Umair,

very well done! Let's see your ferritin first, of course  if I were you I would raise the desferal dosage to 6 vials per day. But let's wait for your ferritin and see what your doctor has to say.

Lena.

Lena,
Thanx for the encouragement and complement ...  6 vials a day  its not exactly but nearly an extreme dose ( if i  m not wrong ) .... i hope there will be good results and decreasing trend in test results .... Thanx alot for taking time to reply ... and keep searching for a good multi-vitamin with iron i will need that now ( i hope ) hahaha ...

Best Regards
Umair

Umair,

I seem to have forgotten that your weight is 41 kgs, isn't it?
So according to that, you may be right for the desferal dosage. 

Lena.

Umair,

Why did you miss the dose of ferriprox?

Zaini.

@ Lena,

I seem to have forgotten that your weight is 41 kgs, isn't it?

Exactly , my weight is 41kg .. and yeah according to that i m taking a lttle more than Average dose of desferal ( 50mg/kg x 41 = 2050mg and i m on 2500mg that is around 60mg/kg i choose 60mg/kg dose bcoze my weight is always hovering between 40-45 soo i thought 60mg/kg will be fine dose for me in that case )  ...

@ Zaini,

Why did you miss the dose of ferriprox?

Bcoze of being lazy to send demand draft to ICI Pakistan , in other words i sent draft when My Ferriprox was near to end ( almost end ) and when i sent demand draft and bfore getting new supply my old one got end soo i missed the dose for a few days ...

Lena and Zaini , Thanx alot both of you for taking time to reply ...

Best Regards
Umair

After a 10 day break I restarted Exjade today.I stopped because of the medical advice and the illness and I felt bad untill the day after transfusion. In other words: I was only able to enjoy the "freedom" for two days, and it was good! (I felt also quilty  )

I don't understand Umair's story. What is different than normally? Is it because IV goes slow over a long period? If it is that, then it's common to me. The last months of desferal I used one easypump over 48hours ( I guess) and then a new one. The only thing what hit your nerves is that during the first day you can not feel of the pump is still working.

I really wish that all of you were able to use an easypump aswell; they are indeed easy!

Dore
p.s. Umair, when will you check your fe again? How ofen do you do it? Every 3 months?

What's different about Umair is he is taking IV desferal, not subcutaneous. Right in the veins. It is more effective than subq and is a great help to anyone whose ferritin is so high like his was.