Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Andy Battaglia on March 19, 2006, 11:48:42 PM
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Hello to All,
This is very useful general information and would also be of specific use to me in my upcoming trip to the Maldives for International Thalassemia Day.
What do each of you do to make chelation easier on your body? Whether you use desferal, L1 (kelfer or ferriprox) or exade (ICL670) or a combination, what do you do? What type of needles do you prefer and why? What type of bandage do you use to hold the needle in place? Do you use any cream on your skin to reduce the pain? Are there any tricks you use as far as type of water used in mixing? Do you do anything afterwards to reduce the reaction on your skin? As far as oral chelators, is there a better time of day to take them? With meals or not? Dosage adjustments? Anything anyone can think of in general?
Thisi is a quality of life issue for thals and anything you can offer is a positive for someone else.
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Thanks for bringing up this topic. I really needed to know what to do to make my Desferal session less painfull.
The only thing that I am doing different than the rest of the Thals here in Rawalpindi is that I use a translucent tape with lots of pores in it that makes it easier to tear off the roll with hand witout using scissors etc. Another advantage this tape has that it is less sticky in terms of sticking to the hairs. So unlike the hard white plaster type tape that most patients use here, this is quite comfortlable to take off too.
Another thing that I do to make my session easy is also followed by many who own their own pump is that I start the session at night and hit the sack and by the time I wake up it's done! (Yep, that's right! most patient can't afford it and have to do the chelation within hospital timings. Again another shocker! Our Thal center in the hospital is not 24/7 it has it's timings and is off on Sunday!)
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Yes I agree this topic has significance to people who have a hard time withe their pump...
I am really saddened to hear that most of Maldivians cant afford their own pump!!!! Its really sad!!!!
I have been fortunate when I started wearing the pump 28yrs ago my parents bought mine from england and back then it wasnt cheap either....
Well I use my pump only 1-2 times a week and am on Deferiprone 7 days aweek...so when I wear my pump I mix it with 20mls of water and put it on at nite, so when I wake up in the morning its all finished...I use the long butterfly needles so I dont get any lumps or bumps from the desferal..I have tried the thumbtacks which i have used in my arms cause my arms are less fatty than my legs and tummy..
I have used my pump in the legs, but outter thigh part of the leg and the upper arm, I didnt find it difficult at all....
If you can get the tape that is transparent it is better....We use that here and another one called micropore which is like paper and its good as well....
Hope these ideas help...
Take care all..
:cheer
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Hi All,
Very nice topic to discuss and have knowledge.
Our 3 and half year daughter is on Kelfer twice daily ,Desferal 10g twice a week and 5g three times a week.Her feretin was on the higher side when last checked.
We generally use the pump the afteernoon after she back from the paly school, Since her school starts early morning we find it better to use it in the afternoon.
We use Omnifix plaster to hold the butterfly needle.Before we remove the niddle with a cotton I wet the whole area of the plaster with local spirit. We have noticed that use of Alcohol swab has led to skin allergy.She gets lots of skin irritation after the plaster is removed.For that we just apply her normal soft cream. We have even used Calamine lotion. It has proved to be nice. She feels much better.
As far as water is concerned we use Water for injection for mixing the desferal.
For reducing the pain before using pump, we apply Emla Cream to reduce the pain while injecting.
Will Long term use of Emla have any side effects???
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There is an article about Emla cream at http://www.drugs.com/PDR/EMLA_Cream.html#W05S05
It is very important that the cream be used in the quantity recommended and no more than that.
The table below gives the amount of cream and the size of area covered using age and weight as requirements.
TABLE 2
EMLA MAXIMUM RECOMMENDED DOSE, APPLICATION AREA,
AND APPLICATION TIME BY AGE AND WEIGHT *
For Infants and Children
Based on Application to Intact Skin
Age and Body Weight Max Total Dose of EMLA Max Application Area ** Max Application Time
0 up to 3 months or < 5 kg 1 g 10 cm 2*** 1 hour
3 up to 12 months & > 5 kg 2 g 20 cm 2 4 hours
1 to 6 years and > 10 kg 10 g 100 cm 2 4 hours
7 to 12 years and > 20 kg 20 g 200 cm 2 4 hours
Please note: If a patient greater than 3 months old does not meet the minimum weight requirement, the maximum total dose of EMLA should be restricted to that which corresponds to the patient's weight.
*These are broad guidelines for avoiding systemic toxicity in applying EMLA to patients with normal intact skin and with normal renal and hepatic function.
**For more individualized calculation of how much lidocaine and prilocaine may be absorbed, physicians can use the following estimates of lidocaine and prilocaine absorption for children and adults:
The estimated mean (±SD) absorption of lidocaine is 0.045 (±0.016) mg/cm 2 /hr.
The estimated mean (±SD) absorption of prilocaine is 0.077 (±0.036) mg/cm 2 /hr.
***cm 2 = square cm
There can be side effects when used improperly over a period of time.
WARNINGS
Application of EMLA to larger areas or for longer times than those recommended could result in sufficient absorption of lidocaine and prilocaine resulting in serious adverse effects (see Individualization of Dose ).
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I use thalaset instead of butterfly needle and it has own sticky tape. So I don't need any supplement.
When I dilute desferal enough, it doesn't cause any allergic reaction. As I have fatty belly, it doesn't hurt. :wink
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Well, that wasn't much of a post - somehow I sent it after just saying hello! Anyway, I was going to say that I use the Norfolk Medical Clear-View "Sub-Q" infusion set that comes with a 6mm thumbtack needle, tubing, and clear tape patch. I also use the tape with the pores in it over that. Does anyone else use such a short needle? Sometimes I wonder if it is long enough. First I use alcohol over the spot, and then skin-prep which is a little buffer between the skin and the tape. If I don't use the skin-prep, I get sore, red spots where the tape was. My Desferal comes pre-mixed. Right now I have an old CADD Prizm pump which is big and heavy. I don't like it. I used to have a CADD micro pump which was great, but it kept malfunctioning and they discontinued it. I have attempted to get a Crono pump about 4 times, but I don't follow through and actually send the paperwork. I hope to get one this summer when I have more time. My insurance isn't too keen on paying for it, so I may end up just buying it. I use the pump on my stomach area. I sometimes get big sore lumps. That's my story. Good idea, Andy, to gather this info. You are amazing. I really look forward to checking messages everyday. Jean
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Jean,
I love this group! It's amazing how things come together here. It just so happens that i've been asking people if they ever used the needle sets from Norfolk and along you come and yes you are. :biggrin
I have a good reason for wanting to know about their needles, as that generous company has agreed to send as many needle sets as I can carry in my luggage with me to the Maldives! It is an incredible offer and has only happened because we have this group and they read that I was going to the Maldives.
What I want to know from you is what do you think of the overall quality of their needles. They look very nice in the brochure and with the clear view, it looks like they are easy to use. Have you used any other needles? I'd like to know how they compare. A thumbtack style needle may help with chelation in the Maldives as so many of the patients are very thin and don't have a lot of padding to stick a needle into. A shorter needle may actually be better for them.
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Andy,
What a coincidence! I like it a lot because it is very easy to use, and I really like the clear tape patch. It is 6mm, which I like, but hope is long enough to get the Desferal where it needs to go. Before that I used MiniMed Sof-set, 9mm, which went straight in, then the needle would be pulled out leaving a plastic needle in. I like the Norfolk Clear-View better because it doesn't hurt as much going in. It would be really good for thin people. It's great to hear that a company is giving away free stuff. Good luck on your trip, and if you have any other questions, let me know. Jean
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Guys, I have experinced something very different recently!
Ever since summer started this season, I have started taking citrus juices and I noticed that I am not getting any painful bumps after Desferal session!
I think that due to vitamin C, Desferal instantly chelates iron and does not get the chance to accumulate under the skin. Either it is that or my doctor has finally learnt to insert the needle properly :rotfl
So, here's a question for those who get painful bumps like me:
Do you take Vitamin C during Desferal? If you don't then try it the next time. See if it works for you or not. If your ferritin is low, then maybe, Desferal does really accumulate under the skin.
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Taking vitamin C with desferal is higly recommended as it does increase the amount of iron eliminated. But...and a very big but (lol...not butt) do not exceed 250 mg of C per day as too much iron can be released into the blood stream and gather in the heart where it clumps and reduces heart function. Citrus is a good way to get C as the dose is not so high.
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My theory of Vitamin C causing no painful bump failed this session :( . I got a nasty bump even I had taken Vit. C. Oh Well.... I was good while it lasted. I guess my doc. needs glasses(spects.) :rotfl
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Hello to all,
In spain we use the microjet crono pump, is perfect, little and powerful.
www.microjet.it
we use too minimed infusion set from medtronics:
http://www.minimed.com/products/infusionsets/quickset.html
Hope these ideas help...
Take care all..
Antonio César
www.alheta.com
Spain
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What a wonderful topic, we go through the motions of taking our medicine (like brushing) without putting much thought into it, when actually the steps we take may benefit someone.
I am on Desferal -
What type of needles do you prefer and why?
I alternate between the thumbtack and butterfly with straight needle. Both have a 27-gauge needle; I find the shorter needles cause bumps and the site becomes red, itchy & hot.
What type of bandage do you use to hold the needle in place?
I use a Tegaderm or Transpore (latex free plastic breathable tape).
Do you use any cream on your skin to reduce the pain?
I do not use Emla or anything similar. Through the years I have found that moisturizing helps insert the needle through the scar tissue.
Are there any tricks you use as far as type of water used in mixing?
I use sterile water not saline; diluting Desferal prevents the hard lumps that take weeks to go away. :banghead
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Hi all! What a good topic! i use a pump from Medis(medical infusion system) and i do use Emla since I started the pump, a guage 25 long tube short needle butterfly from braun and have it before i sleep so while i'm sleeping i'm chelating and when I wake up I can remove it already. I do it 2 vials/ 5 ml of distilled water and find it easier if i use the regular tape(the brown one) as compare to the non allergenic tape (the white one and stickiest tape of all........)
I'm so curious about what you are all using, if everything is just available here i would have tried it all by now...... anyway, the only available here in our country as of date is Desferal and Exjade and i have yet to try Exjade at least after I have saved up enough money to buy one let alone a whole box, LOL since it's very EXPENSIVE!
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Hi Thal. Gal,
Regarding painful lumps I've learnt from the valuable members that going deep does not make painful bumps even though it hurts more as you go deep in the first few minutes.
I had also tried going too shallow which had turned into infected lumps although it hurt little in the start but the end is horrible! So don't try it too shallow.
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This is a interesting topic & im glad andy brang it up its good to see how thals from around the world chelate or what they find useful
to help.I was on desferal (4 vials i diluted it in 10mls water each night) i used the butterfly needle with mircopore tape which is white.
I used to put my desferal in my leg (thigh area) i did get alot of bumps & bruises & to help i used to apply sometimes a cream called
Huirodiud(i think its spelt,its a cream to reduce bruising & swelling it did help)
But I now am on exjade 3 tabs per day 7 days week.I find it so much more convinent & no needles apart from transfuions.
I use emla cream only when i go for blood transfusions at the hospital which is every 4 weeks.
Thanks andy for putting that table up about the dosage for the emla cream no doctor has ever said there was a dosage or how much
to apply for your body weight.I was guessing how much to put on.
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Hi Sajid,
I am responding to the question posted by Andy, and speak from my experience. Longer guage needles work for me, the shorter guage does not.
What type of needles do you prefer and why?
I alternate between the thumbtack and butterfly with straight needle. Both have a 27-gauge needle; I find the shorter needles cause bumps and the site becomes red, itchy & hot.
Cheers,
Thal Gal
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Hi Thal. Gal.
That is what I use too. I use longer ones and make them go deep (about an angle of 45o or more!!). Bit painful in the beginning but no lumps! :biggrin
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Hey Sajid,
Yup :yes, anything to may the process a bit more tolerable.
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Hello everyone, i just start using desferal for my princess.
Going on one vial a day dilute with 5ml sterile water going at 12-17 hours depends on what time she back home. :hugfriend
Is the infusion time long enough for one vial of desferal?? should i try to go longer hours?
Currently using thala set needle. So far princess no complain.
I do apply emla cream on the site few minutes prior needle insertion, am i doing it right?
After few attemps the best infusion sites is on the arm. No complain at the beginning but after rotate left and right arm a few times i began to see bumps n even blue black on the sites sometimes :( that really killing me. How can I minimise that?? Any suggestions? :dunno
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Hi Kinny ,
i think no need to extend the time duration ,i think its good to have 5ml withnin 15 hour ,, it is good i think .. if you are using thalaset needles for your cutie pie you may try that on abdomin as well that will be more easy and good , as i m using same style (thumba back ) needle and i m using on abdomin and have no complaint , i play cricket during chelation with pump . if you want then tell me , i will send you the link of my post in which i mentioned about my experience oof playing cricket while during chelation with pump with thumb back style needles ... i use to have 3 vial in 21-24 hours a day ( in one sessions )...
all that i mentioned above is my personal opinion soo please wait for Sharmin/Manal/ Andy's reply as well to have an expert view on this issue ....
Best Regards
Take Care
Umair
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Hi Kinny,
I receive my son's desferal premixed so I don't know much about mixing it. Umair is the expert with mixing:)
My son is 10 years old. We have always used his stomach for desferal, there are more areas to rotate. We find this to work well because kids usually don't have much fat on their arms or thighs at this age so it is a little easier on the stomach. The marks that you have mentioned may be scars and if you are darker skinned then they may be melasma (hyper-pigmentation). Unfortunately, this may be difficult to avoid. Some of the things you can try, if you are using a butterfly needle is to make sure that you remove the needle in the same direction that it was inserted. Also, applying lotion immediately after removing the needle and cleaning the site is helpful. Try to keep the area moisturized most of the day - with lotion such as Aveeno baby lotion or vitamin e cream. Just don't moisturize right before putting the desferal on because then the tape won't stick and the needle can move. The scarring may not be avoided altogether but it can be lightened with good care. I understand, it can be difficult for parents to see the marks.
Best of luck with the desferal! Please ask any other questions which you may have,
Sharmin
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Hi Kinny and everyone,
Well when I used to wear my pump, I used to put the needle in my arms, legs and stomach, you can even go as far as the buttocks, but not too much on the buttocks cause of the muscle there...
Try and rotate the sites all the time, dont stick to one site all the time, thats where you get the lumps and bumps..
What sharmin says about moisturising is true, dont moisturerise before you put the pump on, tape wont stick..
Try vit e oil, which might prevent the marks and scars..
Hope this helps..
Take care all
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Hi! As for me, I'm doing my chelation before sleeping so it would be done by the am........... and if there's a bump in the site i put ice pack for several minutes :biggrin
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Hi all,
I've stopped using Exjade a while ago so I'm back on desferal...
actually I do have many tricks to share
* I use butterfly needles because they are inserted FLAT that way I can sleep on my stomach at night with out worrying.
* I always insert the needle near the hips (the fatty place) so it doesnt hurt.
* I use Emla for blood tarsfusens not for Desferal at home.
* Put it at night and when your awake in the morning its done.
* make sure I insert the needle correctly because if it wasn't a little deep it will cause bumps and a rash, if it was too deep it will cause pain.
*To remove the acess sticky thingy that the plaster leaves on the skin (marks) I use tea (dip a cotton on in a tea and rubb it off).
this will help :)
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Hi Maryoom,
Why did you stopped the exjade??? Any side effects???
manal
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Hi thalpals
First let me correct something.
I am really saddened to hear that most of Maldivians cant afford their own pump!!!! Its really sad!!!!
Theo, im not sure how you heard this, but this is not true.. Even back in 2006 when u first wrote it, (and im ashamed to say i wasnt aware of this thread before..hehe) it wasnt true. Maybe not every Maldivian thal or thier parent can afford a pump, but everyone is very fortunate, National Thalassemia Centre (NTC) provides a free pump to every thal child registered and Society for Health Education (SHE) provides free pumps very frequently for those who need it. Both NTC and SHE provides medis pumps and this has been going on for several years.The only time thals in Maldives go without pump is when the one they use is broken...so we are very lucky in that way.. just clearing this up for everyone :smiley
As for chelating tricks with desferal..
Like Theo said, i use many sites as possible. I use DFO 5 days a week now (before it was 6).. anyway then i do
day 1 on one point on my right arm
day 2 on one point on my left arm
day 3 on one point on right side of my stomach
day 4 on one point on left side of my stomach
day 5 on one point on my right leg
day 6 finally on one point on my left leg
and then i give one day rest
and repeat again the same way on a slightly different site on right arm, left arm, right side of stomach (you get the drift :rotfl) i used to have soo much pain in my arms ( i used to use only my arms when i was younger) but since i started this method im happy to say all my sites are really pain free.. when its time to do it again, the lumps all vanished..
i use 3 vials of desferal in 10ml of water.. 12 hours.. i put it when i sleep.. and take the pump with me to where ever i go if its not done by morning..
i use butterfly needles for my arms and thighs and thumbstack on my stomach.. i donno for some reason butterfly dont want to work on my stomach.. once i got such a bad infection a minor operation had to be done on it.. so after that no more butterfly needles on the stomach..
i use micropore plaster.. it sticks just fine and is very easy to remove afterwards...
:hugfriend maako
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Hi,
Ι use the microjet crono pump, is little and powerful.
www.microjet.it
I used thalaset needle.
Now I use Qkickset or cleo 90 which go straight in, then the needle would be pulled out leaving a plastic needle in and has own sticky tape.
http://www.minimed.com/products/infusionsets/quickset.html
My injection site is the buttocks in the part that we make I.M injection
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For my 2 year old daughter, slightly below the hip area works the best - we rotate the sides and use emla hals an hour before inserting the needle.
whenever we used arms, she used to have pain and swelling the next day and stomach area scars very easily for her.
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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
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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..
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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.
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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..
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Hello to all,
I'm on Asunra..m taking
3tabs. of 400mg and 1 tab of 100mg
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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.
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Hello Manal,
well the first years I was great with Exjade (gained weight, my hair was so thick) but after few months My skin got a little darker, I started to have pain in my stomach and I lost alot of weight ... I talked to DR ALI he recommended to change the amount I took, I did that and it still didnt work.. My iron levels went up so my Doctors told me we cant do anything ... Here I decided to switch back to desfral , what really scared me a close friend of mine had enlarged liver after taking Exjade so that was a wake up call for me.
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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.
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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
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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 :rotfl and i tell them maybe my PC is making noises :crackup :crackup 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.
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- 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 :dunno 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 :wah
Tariq, that's funny. :rotfl But, why don't you tell them not about the pump?
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Manar,My apetit is fine I have no problems with my liver or anything,,, I just react badly to exjade when I had it i vometed constantly which was obviuosly the cause of me losing weight... and about the iron levels going high because exjade kicks them out of the organs then it will go back down ... its a myth its not true, thats what they keep saying but further cases and results show the oposit .
Dore , Exjade does cause nausea read the side effects on the leaflet
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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
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Dear Sharmin,
I know what do you mean for I my slef have combined exjade with desfral,,, I took exjade and on my BT's I took desferal but then my doctors were worried because of the lack of information they had and one of them thought that mixing the two is toxic,,, any ways I am very happy using desfral as It has proved great results with me in years :D
Mariam
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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 .... :grin
take care
Umair
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thats a great idea umair:D i think i will try it :D
thanks n tc,
maako
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Makoo,
but make sure one thing while changing the needle , that is , no air bubble should go inside , that could extremely harmful as air can't dilute under the skin , that will remain as air bubble if that goes in ... soo b careful while changing the syringe . and please wait if you can i will try to upload the video of the procedure of changing syringe realy soon ... within few days .. that will help you to understand the real pic how u can change the syringe and prevent the air bubbles to get in the tube of needle .... soo please wait for the next update ....
Best Regards
Take Care
umair
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Hello,
When I used Desferal, I used 6 vials in 10 ml of water. It was like 1,5 ml per vial.
I was like this for about 12 years. I tried 20ml syringes but it was too much water for me because I couldn't absorb that amount of solution.
I also tried with 72 hours pumps but the problem was the same. It was too much liquid for my belly.
Best regards,
Laura.
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Hi Buddies ,
guess wat i have to share this time ?.... hummmm ... okiey here it is ..
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 ....
and then i posted again this one ....
Makoo,
but make sure one thing while changing the needle , that is , no air bubble should go inside , that could extremely harmful as air can't dilute under the skin , that will remain as air bubble if that goes in ... soo b careful while changing the syringe . and please wait if you can i will try to upload the video of the procedure of changing syringe realy soon ... within few days .. that will help you to understand the real pic how u can change the syringe and prevent the air bubbles to get in the tube of needle .... soo please wait for the next update ....
i made a promise with you that i will uplad a video of the procedure of replacing empty
syringe to Filled one during the chelation to make chelation long using 5ml per desferal vial formula ..... Soo here it is ....
http://www.youtube.com/watch?v=ifgJn8wAJpA
in the Video, i uploaded on youtube , i m droping a drop of desferal to the syringe in tube's chamber... here it is .... i m doing this to fill the chamber area with Desferal solution before attaching syringe to it , a step toward making sure that there will not any air bubble left .
(http://i383.photobucket.com/albums/oo274/Nice_Friend/deferal-1.jpg)
and here in this pic you can see there is no Air bubble in tube's chamber and anywhere else ... make sure that no air bubble should remin in syringe or tub'es chamber bcoze air cant penitrate under the skin ....
(http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC01404.jpg)
at one place in video , i m beating the join area of syringe and tube ( Chamber area ) , it transfer's the remaindered tiny air bubbles to the Syringe from Tube's chamber ... ... unfortunately i m unable to catch that frome alone as pic .... you may use the empty bottle of desferal for this purpose .... when u r doing this please hold the syringe like this ..
(http://i383.photobucket.com/albums/oo274/Nice_Friend/DSC01403.jpg)
Note : as you may see in video , i kept the chamber below my tummy ( where i poked the needle ) as a precaution measure , it will make sure that, volume of water in chamber will remain same as it was when you seprated the empty syringe. all procedure is realy easy but to be done with special care , ....
please watch video carefuly , to avoid ay mistake ...
Best Regards
Take Care
Umair
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Thank you sooooo much Umair for this great effort, i am sure it will be very helpful after seeing :clap :clap :clap
manal
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@ Manal
Your Welcome Sis , its so nice of you ....
@ all
i think that there is a lack of clearityin images bcoze it is taken by mobile camera , please let me kow if anyone face difficulty to recognize wats going on i video i will try to mention that ....
Take Care
Umair