My Personal Chelation Plan

Greetings Ladies & Gentlemen,

I have been quite away from the forum I adore so much. I was engaged and tied in so many things and experienced worst and best moments of my life in last two years. Year 2011 was worst of my life, emotionally and psychologically, but Allah (God) guided me to the right path and now as I took sigh of relief I found myself landed in another battle i.e. ferritin 7695 & heart palpitations!

I know it’s a shame and height of criminal negligence on my part (Andy don’t kill me) to have those levels elevated that much after being taught all my life-- the do’s & don’ts. However, I have hold strong my weapons now – sword (desferal), shield (kelfer), armor (vitamins & antioxidants) and let’s see whether I do or die!

I haven’t thought of posting my chelation routine, as it sounded stupid to me, but after going through walkthrough-thread by Umair from ferritin 9500 to 200, it was so moving, inspiring and motivating that put me on 24/7 pump for 3 weeks and I have decided to present one more example so that some time, some day, someone would benefit from it just like I did from Umair & Others of course. It will keep me motivated to post the results and so better compliance.
Here it goes:

SCENARIO
General Condition
•   Physical appearance and skin are normal, not showing any signs of iron overload.
•   Appetite, body movement, stamina – Normal.
•   Skeleton and muscles – Apparently normal
•   Spleen – Intact – Enlarged but normal
•   Behavior, feeling and general sense of healthiness – Normal
•   Sleep –could sleep for straight 16 hours- the only thing that bothers me much-- abnormal
•   Heart Palpitations (felt for two months variably but vanished in 2 weeks of 24/7 chelation)

Generally things seem normal, but they’re not!

Side effects/Other Complications
•   Hep C – PCR negative (very old result).
•   Weird tingling/pricking feeling on left leg when I am sleepy, just can’t explain it, I just move my leg quickly when it happens.
•   Itching (plasma reaction) on hands/knees mostly when in high temperatures, but it’s not that frequent  or intense and I am having it from many years by now.

Nothing else really, I have high tolerance and immunity, don’t know why.

Ferritin
On Oct 2011 it was 5500. I took it for granted and was taking kelfer 6tabs/day only, result was 8,500 on 9th July 2012.

BATTLE-PLAN
To kill around 5,500 Ferritins within 3 months (reduce it to 3000range from 8500 ng/mL (7,695+4blood units) within 3 months) BECAUSE I have left with meager 3 months desferal stock (280vials) and have started contacting people for more reinforcements! Overall, want to capture (along with the booty) Ferritin below 100 within 6 months !

Weapons:
24/7 Desferal+Kelfer -- 2grams of desferal mixed in 23ml water to run for 24 hours subcutaneously plus 9 tablets of 500mg deferiprone Kelfer. Weight = 49-50kg
Dietary Supplements (for details goto http://www.thalassemiapatientsandfriends.com/index.php/topic,118.msg44004.html#msg44004


You said I can’t do it ? Let’s see… its Do or Die !

ATTACK !!!

MESSAGE FROM THE BATTLE-FIELD -- 28TH July ’12

24/7 2g desferal for 24hours plus 8 kelfer tabs for 19 days (9July-28July, one day off) in a row! Heart Palipitations have vanished within two weeks from 9th July ’12 – 24th July ’12.

Four injection sites wounded me. Two on upper arms, two on belly

Roger that. 

Good luck major, the victory would be ours, together all, we will overrule thalassemia and iron overload. 

Ahlan Waleed,

I am very glad when hearing thals  fight to lower their ferritin levels. I have been doing this for years myself until I have finally reached the required ferritin level which is around 100. And I keep it in this range.

It's lately though that I have learnt that it is not enough to have a ferritin on this level or to have your MRI showing clean liver and heart. You must also keep the iron out of your body circulation and your organs should not have the tendency to collect iron. In order to achieve this, one should keep up with the chelation program even when one has low ferritin levels.
In my Unit, all thals were part of a test showing the "before and after" free iron in the body- I am talking about the before-and-after-chelation free iron in the body. So in my case, with a ferritin of 93, it was found that I have no free iron circulation in the body but my organs (though clean by the MRI) tend to collect iron. What does this say? It says, that I cannot - must not- stop chelation ever!
I have talked about this again and again in this site and now we have seen it by test. NEVER STOP CHELATION, NO MATTER HOW LOW YOUR FERRITIN IS.

Keep up Waleed with the good work,

Lena

keep up the good work!

the tingling sensation on your leg is called "restless leg syndrome". i also get this once in a while and i find it gets worse if my room is cold.

Waleed brings up something else important here. Finding desferal is still a challenge for many patients, so if you know of any unused stock, offer them to another thal or contact me and I will make sure the desferal is used.

MESSAGE FROM THE BATTLE-FIELD -- 05 August ’12

Killed 2000 ferritin enemy within a month of battle, Ferritin reduced to 6500 from 8500. Only Desferal used as weapon.

That's the third report we've had recently showing significant drops in ferritin. In every case, the key is compliance. A no excuses approach is needed and is also successful. I am very pleased to see these reports. When the patient takes his or her role seriously and decides that compliance will be full time, success is found. Keep up the good work, Waleed.

That's great Waleed.

Am happy that we all, with generous help of Andy and other Thalpal members are proceeding towards living a better quality of life by learning quick chelation techniques. :D

I would suggest you to take Exjade if possible, or add Kelfer to desferal as well.

-P.

Pratik that result was for first month of chelation only, after that i added whopping 10tablets kelfer and vitamic c and mega black tea. The results from september-november self intensive therapy will b known on wednesday inshaAllah. I m very very curious to know the rsults. I predict the rsult would b somewhere in 3000's. Lets wait and see

All would be good, I'm sure that would yield marvelous results. All the best, Waleed.

-P.

Hello thalpals,

Recently I posted that I reduced iron by 2000 in one month (9July-5Aug) using Desf+Kelfer and my iron was 6500 on 5th Aug, but the other side of the story is very gloomy. On Wednesday I got results of other 2.5 months chelation and the score is very depressing at 6431 !

July  - Iron 8,500
Aug  - Iron 6,500
1month chelation = 2000 ng/ml by 100vials
Avg iron chelated by 1vial (with kelfer) = 20 ng/ml

Aug - Nov - Addition of 2,250 iron (9 RBCSs)
15/11 iron 6,431
2.5 months chelation = 2319 ng/ml by 160vials (6,500+2,250-6431)
Avg iron chelated by 1vial (with kelfer) = 14 ng/ml

So my latest Fe as of 11th Nov is around 6,931 (6,431+500) post-transfusion.

Do you think the average amount chelated by 1 vial was satisfactory in second interval?

I am not at all happy because I’ve failed to reach my target of lowering the iron in 3000 ranges within 3 months. After doing the math, I came to know that I had used less desferal during 3 months than what I should have to reach my target.

I have lost the 3 months battle- but it’s a war till death. So I am up again once more to challenge umair’s target of reducing 6000 iron in 3 months.

Let’s see whether I remain alive (as my life is at huge risk with that much iron) to reach those levels.

Target – to reach 3000 ng/ml iron by the end of feb 2013.

InshAllah

Hi Waleed,

No problem. It maybe that it indeed may have removed the iron but it was shown in the blood report due to possibly being in the blood stream while the blood work was done.

I don't want to disturb your chelation plan, but if it's possible for you, switch over to Asunra/Exjade, split the dose (optionally take it with lemon juice at least either of the time) and experience the marvelous results.

See my topic - http://www.thalassemiapatientsandfriends.com/index.php/topic,4482.0.html

Especially last 4-5 replies in it.

All the thalpal patients including me who were taking Asunra didn't chelated iron well, switched to split dosage and I believe I can say speaking for all that all have got positive results.

Of course desferal + kelfer are no doubt, best combination, but it might be worth to switch and see what happens.

-P.

I would like to say simply, "DO NOT WORRY"

Because, i believe from heart is that,
Combo is working but in a different way.

There is something which is to be removed first and that is Tissue Iron (Frm heart and liver)..
 Your body is following a pattern of removing tissue iron first and then most probably it will remove intra vascular or the ferriting circulating in the blood and ferritin is less harmful than Iron.
So Do believe that your body is wise.

I assume that your Cardiac and Liver MRI T2* score has not been done.

Another thing is that Kelfer is Cardio protective and also remove iron frm heart tissue, so your heart is becoming clearer.
Desferal alone can reduce less ferritin. but both are working.
Generally,
Aggressive chelation take atleast 1 year to bring ferritin at normal level.
Keep Chelating
Keep Patience
Keep Chelating