Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: HaIkEr77 on November 14, 2008, 03:28:05 PM
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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??
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The risk would be in not listening to your doctor. If your doctor has said that you need 24/7 desferal, do it. It is an aggressive chelation technique that can help to overcome iron overload. It works.
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Hi HaIkEr77 ,
i use to take 3 desferal vials in 24hours it's ok to use that much long . but , i dont have experienced 7 days a week :biggrin ... now i m on this pla , 6 desferals in 48 hours Non-Stop, once or twice a week , its my own plan , which meet's to my comfort .
hey , are you using any chelater other than the desferal??, like Ferriprox/L1/Kelfer or Exjade/Asunra Oral chelators ??...
Take Care
Umair
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HaIkEr77,
I was on 24/5 desferal. Be awared that the dose of desferal isn't too high. My doc decided to also increase the amount of desferal. That wasn't a smart plan. I developed an allergic, and I can't take it anymore. Nah, new doc won't try again and see what happen. Even the pharmacist said something about the high doses.
I couldn't stand the idea of 24hours for weeks, so 2 nights per week I could sleep on my favo side ;)
At the moment I am taking Exjade.
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Hi,
I am on desferal for 12-18 hours 24/7. I dont have any problem with it. The only thing that i dont like is carriying the pump.
At first, I dont like the idea of using the desferal for long hours but after seeing the result, it was so unbelieveable...I am so happy that i stick with it and sometimes even do the 24hours desferal :biggrin
And that too did not have any side effect...Wether i am doing desf for 12 hours or 24 hours, the effect is when you get your feritin result, it goes down tremendously and you will find it is worthwile for the efforts that you have put through.
try it.
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thanks u guys..
i try my best to keep my desferal running for 24hour.. but sometimes when i'm working it's hard for me to carry the pump..
and my pump are a bit slow.. :whyme
hhmm.. can i thicken the dose example for each bottle of the desferal i only use 3ml of water instead of 5ml.??
and by the way nice friend in taking L1 too.. my dose are 6 tablet / day.. :wink
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Hi Haiker ,
can i thicken the dose example for each bottle of the desferal i only use 3ml of water instead of 5ml.??
once i asked this to my Dr and she Replied No she said diluting desferal in less water will make the solutionthick and thick solution will penittrate slowly until that penitrate that will remain like a cyst over the site ... about the time .. nothing is compareable to the long duration of chelation therapy .. bcoze desferal remain 30 minutes long in the boddy after the stoping chelation after 30 minutes its chelation process will stop .. soo its best to keep the duration longest ,that is only way to keep chelation process continued for a long time ..... i m on Ferriprox/L1 9 a day with long chelation with desferal .......
Take care
umair
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o.i.c...
thanks nice friend.. i got one more question..
why sometime my urine do not change colour to brown when i'm using my desferal... but most of the time it does..??? :huh
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Hi Haiker ,
well , i m not an expert , experts are here noow ,hope they wil answeer your query ,, i dont why i m in supreme members ( i think just bcoze of my junk posts hahaha ) .. well i hope that one of Andy,Manal,Sharmin or Zaini will reply to your question exactly ..... but i guess that it could bcoze of fast infusion of Desferal , as many people kknow the fact that , desfeal remain's in the body and chelates for 30 minutes after chelation ... soo it could b a reason that your r taking it too fast and that is not doing a fine job bcoze of it... it will b good to infuse it slowly so everydrop work for its full time ... i think, i didn't answer exactly ... :grin
Take care
Umair
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HaIkEr77, are you taking vitamin C with your desferal? it does free up more iron to be chelated if you take it with desferal.
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HaIkEr77,
Desferal can have side effects, but they are minor compared to the side effects of iron overload. A very small percentage of people can suffer some toxicity of desferal, most of the symptoms are reversible. Iron overload however, is very serious and it can damage your organs and in effect can be fatal. You need to balance the large risks of iron overload with the smaller risks of desferal toxicity.
I also think that you should take vitamin C, 1/2 hour after beginning desferal it should increase the amount of iron bound and excreted (because it cause the liver to release iron which desferal mops up from the plasma). How well you insert your desferal needle can affect how well and how quickly the desferal is absorbed. If you get it beneath the layers of skin at a 45 degree angle it works very well. If you get the needle between meshed layers of skin then the desferal can pool under the skin. This can either occlude the pump or delay the absorption of desferal. Other factors such as hydration and diet can also affect the color or your urine some days.
We find that when our son takes vitamin C his urine will be darker the next morning. Since he began taking Exjade, his urine is red several hours after taking the desferal off.
Best of luck with your chelation - and definitely keep up the 24hr chelation - nothing removes iron like around the clock desferal!
Sharmin
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Sometimes my urine doesnt change colour too. From what i've told it could be that you are putting desferal while you have a cold or flu. It is adviseable to stop using them if you do and start the desferal back when your are feeling better.
I'm not too sure about this one. Can anyone explain more? and the dosage for vit C is 1 tab for every bottle of desf? is that right?
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Hello everyone,
I always ask myself.. If we were to go on desferal 24 hours a day is that mean we do not have to get a new site? Is this possible??
Can i have a brief picture of what is going one when we doing desferal 24 hours?
New to desferal
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Hi Kinny ,
i think that , you dont have to change the needle or site for 24 hours , while you are on 24/7 treament plan . i mean to say , you may have a full day of chelation with one needle and one site ..
i used to have 3 vial in 24 hours with one needle (sometimes, a little more than 24 hours ) , one poke ... i dont know exactly abt it . alll that i said is on my personal expereince , how i use to have chelatioon ... if you are using Thalaset , you may read the instructions abt the usage of needle , there on needle's packing you ccan find the instruction abt how long you can take that needle in your skin and at-least how much time you should have to change the needle ... abt Baxter's needles that andy sent to me , i red on that ,
SINGLE USE ONLY , DO NOT RE-STERILIZE. REPLACE AT LEAST 48 HOURS ...
you can also check the needle's packaging , that you are using , to know these details .....
finaly my opinion is , one needle , one site , one poke , and a complete session of 24 hours of desferal . after 24 hours you may change the needle ... but its only an opinion ..
Also wait for other member to answer this question ....
Best Regards
Take Care
Umair
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hhhmm....
wow.. so much information.. thank a lot you guys...
To andy, . . yes.. i do take my vitm. c when im using my desferal..
To Nur.. i think u have a point there.. bcoz at that time i have a bit flu..
To Sharmin, . . i'm not very good with needle.. Maybe that one of the reason too.. and thank for u wish..
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Only helping as much as i know.
May i ask where are you working at Haiker? Pejabat kerajaan atau swasta? I am working too and currently in private company and i carry my pump to work too. I agree with you that they are heavy.
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I think what Sharmin said is the likely problem. And this is one more reason that thumbtack needles are easier to use. They go straight in at a 90 degree angle so it's much easier to get them deep enough to do the job.
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hai nur,, i'm working at pejabat kerajaan.. (kerani biasa aje)..
and i yes the pump is a bit big for me to carry.. hhmm.. and sometimes the pump can be a little annoying when i'm working.. i wish they can invent a slim pump which is much more lighter and smaller...
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Hi Nur & Haiker,
I am from Malaysia as well. My daugther is 5 years old. Talking about the pump.. I saw some post stating that there's a light weight infusion pump call Chrono Pump. Have u guys enquire about that? Is it available in Malaysia? I wonder is it expensive. May i noe what brand of pump do both of u using now? I am borrowing other patient's old pump currently. Thou i am still searching for a good but not so expensive pump that available.
Waiting for reply :wink
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regarding the needle @ 45 degree angle, lets say if i am using upper arm site, wouldn't the butterfly sort of stand on my arm, how will i tape it then. I usually start at approx 30 degree angle while entering the needle, then when i feel something like needle has entered some sort of empty area, i slide it horizontally and i really feel that needle is resting between skin and muscle.
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hai kinny and tariq..
i'm using sims graseby pump right now.. which is fixed rate syringe driver.. it take 11hour to finish my 15ml desferal.. i have seen a lot of different pump here in sabah but all look the same size, only some have digital setting and can change the rate hour and speed.. i don't know what the price is but here in sabah free pump are given to all thalasemia. :wink
eemm.. tariq i'm not very good at needle injection.. so i can't really answer your question.. and i never try inject my self at my arm.. maybe someone else can help here... plsss... :huh
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Hello HaIkEr77
I use Desferal, I take 4 Desferal vial, 8 hour in a day, 7 days in a week with out stop and I use 10 cc of water and i use pump I don't have any problem.
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I use Desferal, I take 4 Desferal vial, 8 hour in a day, 7 days in a week with out stop and I use 10 cc of water and i use pump I don't have any problem
Hi Qiji,
isn't it too fast , it means 2 hurs per desferal vial , its too fast ,i thin its best to take desferal as long as u can to take full benefit to it .... i think it too fast .... wait for others wat they have to say abt it ..
Take Care
Umair
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Qiji,
As Umair has said, we would like to see you do your desferal over a longer period of time if you can. You should be using it for a minimum of 10 hours in order for desferal to be really effective. 12 hours would be even better. It is great that you are using desferal 7 days a week, if you add a couple of more hours to each day that would be perfect. Also, do you take vitamin C 1/2 hour after beginning desferal? That would an effective method to remove more iron with desferal. If you don't mind me asking Qiji, what is your ferritin level?
Sharmin
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ya I know that but the problem is time.
what you mean by ferritin level ??
ferritin level = Iron level
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Serum Iron: shows how much Iron is in the Blood (the amount being currently used) while the
Serum Ferritin : shows the amount stored in the body for future use.
something like that :huh
The serum ferritin is a more sensitive test than the serum iron or TIBC for iron deficiency and for iron overload..
Hi Qiji ,
Yes , Serum Ferritin is to check iron Level in blood , as above mentioned quotes mentioning it.... but please wait for other members to reply , it will b good ....
serum ferritin, which is a reflection of the total amount of storage iron.A ferritin test measures the amount of iron in your blood.The amount of ferritin in the blood shows how much iron is stored in your body....
i hope you got your answer ..
Best regards
Takee care
Umair
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Its A Quote From, to read full article here's the link below
http://www.keratin.com/ab/ab014.shtml
An explanation of iron and serum ferritin tests
There are actually several aspects of the iron metabolic pathway that can be tested. In terms of hair loss the most useful test value is believed to be the serum ferritin level. However, testing other iron parameters can be helpful in understanding the general health of patients.
Serum iron level - Serum iron is a measure of circulating iron bound to transferrin and reflects total body iron. Serum iron measurements may be affected by menstrual cycle, time of day, diet, hepatitis, and use of iron containing placebos found in some oral contraceptive packages. On its own this test just gives a snap shot in time of your iron levels and it is not very helpful for defining a chronic iron deficiency or other iron problems. However, when the test value is examined in comparison to other iron tests it can help provide information leading to a disease diagnosis.
Serum ferritin level - Ferritin is an indicator of stored iron in the body. Ferritin is the main protein that stores iron for areas that need it, especially the liver and the bone marrow where red blood cells are made. The iron ferritin level is the first in line to drop if the individual suffers any iron insufficiency from diet, malabsorption or loss during heavy or menstruation lasting more than 5 days. A drop in the iron ferritin level occurs before any depletion in serum iron (as seen in iron-deficient anemia) and may decrease significantly without any obvious symptoms whatsoever. While the serum ferritin level at which a deficiency can be claimed is hotly argued by different schools of doctors, an excess of serum ferritin is generally agreed to be a bad thing. Iron stored at high levels is toxic. The body can only metabolize so much iron in a day. If it receives too much, the body is overwhelmed and toxic effects develop. It is possible to overdose on iron supplements. For this reason, taking large supplement doses of iron is not recommended. If, in response to a low iron and ferritin test result, you start to take iron supplements and feel ill, it probably means you are taking to much for your body to cope with. Take a lower dose.
Its A Quote From, to read full article here's the link below :
http://www.webmd.com/a-to-z-guides/ferritin
A ferritin blood test checks the amount of ferritin in the blood. Ferritin is a protein in the body that binds to iron; most of the iron stored in the body is bound to ferritin. The amount of ferritin found in the blood is the same amount that is in the body.
Its A Quote From, to read full article here's the link below :
http://www.medhelp.org/medical-information/show/261/ferritin
Alternative Names
Serum ferritin level; Serum iron
http://www.chemistry.wustl.edu/~edudev/LabTutorials/Ferritin/Ferritin.html
above mentiod link's index is ,
Key Concepts:
- Importance of Iron in the Body
Iron-storage Protein and Control of the Amount of Iron in the Body (Interactively view a molecule in this section.)
Graphical Molecular Representations
Importance of Molecular Visualization
Different Types of Representations and What Information They Give
Structure of Ferritin
Amino Acids
Peptide Subunits (Interactively view a molecule in this section.)
24-Subunit Structure (Interactively view a molecule in this section.)
Removal of Fe from Ferritin
Crystal-lattice Mineral Structure
Channels
Polar vs. Nonpolar (Interactively view a molecule in this section.)
Another link about Ferritin Test .... but it have the same info ,that above mentioned links have.
http://www.nlm.nih.gov/medlineplus/ency/article/003490.htm
Best Regards
Take Care
Umair
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thank you Umiar for this good information realy you are nice friend.
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:grin :biggrin :grin :biggrin :grin
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hello everybody..
can i ask something. . . what is the accurate time to take vitamin C??
bcoz i seen some people say 2 hour after u set u desferal, some say 1 hour and some say 1/2 hour after beginning desferal..
which one is the best time to take vitamin C?? :huh :huh
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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... :biggrin
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.
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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.
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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
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Sajid posted a link to the Crono site some time ago. http://www.intrapump.com/ambulatory/index.htm
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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 :grin
dont mind , just kidding , please ignore it if u don't like it ....
umair
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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. :teehee
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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??
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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.
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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 :) .
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hi friends when i take Vitamin C
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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