Chelation Tips. What do You do to Make Chelation Easier?

Andy Battaglia

8793
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Will thal rule you or will you rule thal?

Chelation Tips. What do You do to Make Chelation Easier?

« on: March 19, 2006, 11:48:42 PM »

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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Andy

All we are saying is give thals a chance.

§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #1 on: March 20, 2006, 05:25:45 AM »

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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Smurfette

242
Gender:
Me and my Goddaughter

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #2 on: March 20, 2006, 09:08:20 AM »

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..

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ALPA

6

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #3 on: March 24, 2006, 06:40:14 PM »

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???

« Last Edit: March 25, 2006, 06:07:00 AM by Andy »

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Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #4 on: April 03, 2006, 05:12:28 AM »

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.

Quote

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 (Â±SD) absorption of lidocaine is 0.045 (Â±0.016) mg/cm 2 /hr.
The estimated mean (Â±SD) absorption of prilocaine is 0.077 (Â±0.036) mg/cm 2 /hr.

***cm 2 = square cm

There can be side effects when used improperly over a period of time.

Quote

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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Andy

All we are saying is give thals a chance.

baris

8
Gender:
thalassemia major

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #5 on: April 06, 2006, 09:14:22 PM »

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.

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jzd24

372
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Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #6 on: April 07, 2006, 01:52:38 AM »

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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Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #7 on: April 07, 2006, 02:04:59 AM »

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.

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

All we are saying is give thals a chance.

jzd24

372
Gender:

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #8 on: April 07, 2006, 02:58:40 AM »

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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§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #9 on: May 07, 2006, 08:13:04 AM »

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

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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Andy Battaglia

8793
Gender:
Will thal rule you or will you rule thal?

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #10 on: May 07, 2006, 09:40:17 PM »

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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Andy

All we are saying is give thals a chance.

§ãJ¡Ð ساجد

Beta Thal Major
1991
Gender:
اَسّلامُ علیکم Peace be Upon you

Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #11 on: May 22, 2006, 01:46:06 PM »

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.)

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pianjy

12
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Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #12 on: July 19, 2007, 04:33:52 PM »

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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ThalGal

50
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Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #13 on: July 19, 2007, 05:30:19 PM »

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.

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Lyanne

365
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Re: Chelation Tips. What do You do to Make Chelation Easier?

« Reply #14 on: July 20, 2007, 07:44:23 AM »

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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LYANNE