• Welcome, Guest. Please login or register.
    February 18, 2019, 07:37:58 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andy@thalpal.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal © A. Battaglia 2018





54937 Posts in 5836 Topics by 6084 Members
Latest Member: ritaferreira

Forum Tip: 
You can now simply type thalpal.com into your browser and it will take you to this site. Tell your friends about this easy-to-remember name.
www.thalpal.com
« previous next »
Pages: 1 2 » Go Down Print
Author Topic: All 3 chelators at once  (Read 8335 times)
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« on: March 22, 2016, 03:55:09 PM »

Friends,

I couldn't find research on using all three chelators (desferal, exjade, kelfer) all at once simultaneously. My iron is in 5000s and I am thinking to try this much intensive chelation.

Desferal 10 vials (500mg) over 24 hours, two doses of 5 vials 12hr each. I have been doing this for a month now based on the guidelines that for patients with extremely high ironoverload may be given 6gram of IV desferal over 24hours. My dose, though subQ, is 5g over 24hr and I have well tolerated it for last 3 weeks. Also the therapeutic index is below 0.025.

Exjade started at 20mg/kg divided into two doses over 12hr

Now I am adding Kelfer at 20mg/kg daily split over 2 doses over 12 hr

So on daily 24hr basis
Desferal 5g + Exjade 20mg/kg + Kelfer 20mg/kg

This personal research is exciting!
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #1 on: March 22, 2016, 03:58:27 PM »

Anyone who had personally tried this before may share his/her experience.
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Nomad
Junior Member
***
Offline Offline

Location: Germany

Gender: Male
Posts: 148


In Darkest Day in Brightest Night...


« Reply #2 on: March 22, 2016, 04:31:41 PM »

Waleed, I don't really see the point in taking all 3 chelators. What for? I'm on combined therapy (Exjade 22mg & Ferriprox 80mg) since 20 months and it is working very well! Besides Ferriprox is not working below 50mg...
I would rather higher the dose of two chelators than taking all 3! It's too risky I think.
Logged
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #3 on: March 22, 2016, 04:44:41 PM »

Nomad,

Thats the starting dose for Exjade and Kelfer. For Exjade I will increase it upto 30 or 40mg and Kelfer will be increased upto minimum of 75m/kg. The only point Nomad is that I want to do as intensive and as speedy chelation I can. I wil be monitoring things for side effects and see how it goes.
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Nomad
Junior Member
***
Offline Offline

Location: Germany

Gender: Male
Posts: 148


In Darkest Day in Brightest Night...


« Reply #4 on: March 22, 2016, 08:36:16 PM »

Waleed, well good luck then to you. I have never heard anyone say anything about it and I would be very concerned about the side effects... I hope that everything goes well. Keep us updated...
Logged
Dharmesh
Global Moderator
Supreme Member
*****
Offline Offline

Location: Virtual World

Gender: Male
Posts: 606



« Reply #5 on: March 23, 2016, 02:21:46 AM »

this is huge dose given only at a time when pt is in iccu while facing cardiac failure.
high dose will lead definitely lead to breakdown of RBCs and the same had been told by you that your hb is getting down

Whats ur T2* Score as only ferritin can not give base for deciding for 3 chelators

You only needs patience not 3 the chelators
Logged

Start listening your body, it always gives signs
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #6 on: March 23, 2016, 02:39:57 AM »

this is huge dose given only at a time when pt is in iccu while facing cardiac failure.
high dose will lead definitely lead to breakdown of RBCs and the same had been told by you that your hb is getting down

Whats ur T2* Score as only ferritin can not give base for deciding for 3 chelators

You only needs patience not 3 the chelators

Dear Dharmesh,

What's the reference that high desferal dose leads to higher RBCs breakdown?
Unfortunately I do not have access to T2* so I have to rely on ferritin in the short term. Arrythmias are good indication that my heart is full of iron and love.
Regarding patience, staying longer in high Fe ranges is huge danger, the answer to why 3 chelators is the same as to why 2 chelators, I am trying this to see if all three chelators bring down ferritin much faster and whether or not there would be any side effects since there is almost no research work done on this. It may or may not work but at least we would have a n idea of what actually happens.
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Sharmin
Global Moderator
Supreme Member
*****
Offline Offline

Location: Canada

Gender: Female
Posts: 4155


Little A


« Reply #7 on: March 23, 2016, 11:06:27 AM »

Waleed,

I am also concerned about the use of 3 chelators simultaneously. I agree that you should be on desferal and exjade in combination first. Using desferal with exjade is a quick and effective methods of quickly dumping large amounts of iron out of the body. You will make significant progress within the first 8 to 9 months.  Because your iron load is high, I would suggest using this combination for one year as the exjade will remove iron from your organs and the desferal will then mop it up from your blood stream and rid your body of it.  After one year you can consider Exjade and kelfer together - but assess at the one year period.  Exjade is effective in removing iron from all organs including the heart. 

I do not think that the 3 chelators have been studied together and you risk serious side effects if you take them all at once. 

Make sure also that you maintain good hemoglobin levels - above 10 if you can.  In the long run, keeping higher iron levels will actually aid in keeping iron levels lower.

Best,

Sharmin
Logged

Sharmin
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #8 on: March 23, 2016, 03:02:26 PM »

Sharmin,

Thanks for your comments. I have used desferal and kelfer in the past and it worked really well. What you are suggesting is ofcourse tried and proven approaches to lower iron safely and is a best qualified advice to be recommended. How I see it is that 1 or 2 years is a really long period and Allah knows how many patients have lost their lives while trying to lower ferritin down. I ask myself, why it has to be 1 or 2 years game? why not get out of that danger much earlier even if one have to go on 24/7 IV like Umair once did. I personally would prefer getting hospitalized on IV desferal if thats what it takes to get out of danger as soon as possible. Guidelines do say, for example, that it takes 17 months to remove half of heart iron, but these research results and conclusions like others were reached after applying safe methodologies in very controlled settings. There are so many 'what ifs' and 'how much' that are unanswered just because we don't have enough research. I mean how many patients long waited to get the combination therapies approved in their areas just because enough research wasn't available and perhaps some other time in the future we would know that had patients used X chelators with Y dose over Z amount of time, the iron would have reduced in much shorter period. I totally agree with your concerns that it might be too risky, but again, such concerns were always there for 2 chelators till they were tested. I'll monitor results closely and see whether 3 chelators is something worth trying or not. And we would only know that, once someone has tried. I am willing to try it out myself and discover whats actually in there in that grey area that we haven't yet discovered. Biggest motive for me is to get the iron low asap to save the spleen.
« Last Edit: March 23, 2016, 03:16:50 PM by Waleed » Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8531


Will thal rule you or will you rule thal?


« Reply #9 on: March 23, 2016, 03:31:26 PM »

Waleed,

I would say that whatever chelation program you use, it is essential that you get regular monitoring.

I have just heard this week about chelation programs being used in Toronto that I didn't think anyone was using. One woman told me about taking 130 mg/kg of Ferriprox daily for 4 years to bring her iron under control. Since the highest recommended dosage is 99 mg/kg, I was a bit surprised. It worked for her and another patient in Toronto has been advised to use a similar program. My point is that we are still learning a lot about what can be done with chelators. The key is always that the patients need regular monitoring, but as long as they are tolerating these high doses, they are doing well. In some stubborn cases, this may be the needed approach.
Logged

Andy

All we are saying is give thals a chance.
Dharmesh
Global Moderator
Supreme Member
*****
Offline Offline

Location: Virtual World

Gender: Male
Posts: 606



« Reply #10 on: March 24, 2016, 05:16:55 AM »

Dear Andy,
I mentioned earlier somewhere else in a post that defriprone is being used upto 125mg/kg in India.

Waleed,

Even when ur fe is high, it is not possible for the body to make available iron in required quantity as your dose of desferal is double of reco dose. When iron is not available in blood the desferal starts chelating iron from RBCs. (Andy pls rectify if needed)

Low hb can also cause arrythamia in addition to high Fe

I agree with advice of Sharmeen, remembering my own experience when i was having Fe 11500+ and by just adding desferal @20mg/kg with DFX 50mg/kg it comes to 5000 aprx within a year.

Hope it help.
Logged

Start listening your body, it always gives signs
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #11 on: March 24, 2016, 07:30:59 AM »

Friends this is very interesting and as encouraging.

•   29th Feb - Ferritin 5,778 ng/ml
•   Transfused 2 RBCs next day
•   Daily Exjade 20mg/kg + (20 days) 24/7 subQ desferal 5g (98mg/kg)
•   23rd Mar- Ferritin 5097 ng/ml

That’s almost 1,181 ng/ml reduction in 20-23 days.  However, platelets dropped from 86 K/UL to 68.
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Waleed
I'm not normal but Supernormal
Junior Member
***
Offline Offline

Location: Lahore / Riyadh

Gender: Male
Posts: 205



« Reply #12 on: March 26, 2016, 10:51:20 AM »

Friends,

I reduced iron dramatically over a month but my Hb and platelets became really low. I believe the reduction in platelets to be most likely, based on past experience, from the induction of kelfer for last 5 days, however, exjade or very high desferal dosage may have contributed as well. I have now planned to stop exjade and kelfer altogether as of now to see if platelets increase. As for Hb, most likely it is getting lower faster because of spleen but on Dharmesh's "opinion" that very high dose of desferal may lower Hb, I have now decided to play safe for a week atleast and be on 68mg/kg of desferal instead of 98mg/kg. I will re-increase the dose of desferal to 5g a day if Hb levels don't inprove.
Logged

Waleed Hussain, +966 590 293 500
B.A, LLB-P1, BBA, MBA, CIA, CFA-Level 3 Candidate
Andy Battaglia
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8531


Will thal rule you or will you rule thal?


« Reply #13 on: March 28, 2016, 09:12:59 PM »

Make sure you are also taking folate daily to help produce platelets. Trial and error will tell you which combination and dosages work best for you. Please be very self observant.
Logged

Andy

All we are saying is give thals a chance.
Isha
New Member
*
Offline Offline

Posts: 12


« Reply #14 on: December 26, 2017, 12:50:30 PM »

Hi,
Waleed you have taken all 3 chelators . What result you got ?
How many days/months you did that ?
Any significant side effect except low Hb/Low platlets ?

Andy
My Fe reports  06/02/17 - 2920
                     02/11/17 - 2440

Have been taking
(1) Kelfer 6 to 9 tabs(500mg) daily- 9*500mg=4500mg = 4500/55(kg)=  81mg/kg per day from last 1 year.(very irregular on taking medicines)
(2) Desirox/Asunra (400mg)daily 4 tabs - 4*400mg= 1600mg= 1600/55= 29mg/kg per day from last 1 month.
(3) just Started Desferal(0.5g) daily 3 vials = 0.5*3= 1.5g  per day from last  3 days.

T2* scores= 0.22ms for liver  , 28.3ms for heart iron.

All 3 chelators simultaneously is a bad idea , not ready to take any side effects.
Heart palpitations , high heart rate most of the day,body fatigue ,cant run , stairs are my enemy.
I feel the iron is the culprit for all heart issues. Because I was ok before pregnancy but now I feel all the issues .
I want to get rid of Iron asap.
should i increase the doses ? Any suggestion please
Logged
Pages: 1 2 » Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!