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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





54975 Posts in 5841 Topics by 6088 Members
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Author Topic: Start decreasing Fe  (Read 69179 times)
Dharmesh
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« Reply #60 on: August 07, 2014, 04:50:01 AM »

Thankyou Bostonian
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« Reply #61 on: August 08, 2014, 01:17:16 AM »

Dharmesh,

This is great stuff 

Your experience is also quite valuable - I have been pushing a few people at my centre to use combination of Kelfer and Exjade to bring down their iron levels, since only Exjade does not seem to be working (for 1.5-2.0 yrs) and your data is really useful.

Andy,

Thanks for the point about using ibuprofen to treat joint pains, instead of taking them off Kelfer.  I remain a huge fan of Kelfer, seeing how effective it has been with most people who have been compliant with it - we are seeing Ferritin drop below 1,000 for many thals, and below 500 for some.

Poirot
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« Reply #62 on: August 08, 2014, 02:18:45 PM »

Here I should also mention that with Exjade we have seen tummy aches and acid reflux....and my daughter's doctor prescribed Zantac day and night instead of lowering her exjade dosage.
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Dharmesh
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« Reply #63 on: August 09, 2014, 03:01:54 AM »

Dharmesh,

This is great stuff 

Your experience is also quite valuable - I have been pushing a few people at my centre to use combination of Kelfer and Exjade to bring down their iron levels, since only Exjade does not seem to be working (for 1.5-2.0 yrs) and your data is really useful.

Andy,

Thanks for the point about using ibuprofen to treat joint pains, instead of taking them off Kelfer.  I remain a huge fan of Kelfer, seeing how effective it has been with most people who have been compliant with it - we are seeing Ferritin drop below 1,000 for many thals, and below 500 for some.

Poirot
Yes. Poirot u r right. This is a great combination. I really thanks to Jatin here to advice me to start this combo for 2 days/week with low dose (less than 50mg/kg)
Then after Dr Ramanan prescribed me and inc the dosage to 3days/week .(At that time i was taking all the 3 chelators simultaneously)
Exjade is not effective when pt is on hypertransfusion  (20ml/kg/month or more ) or having severe iron overload.

ibuprofen or brufen is not good i think. if one still need pain killer , paracetamol 250 should be used but not more than that. And zinc, trace elements and cal mag and vit D should be given adequately.
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Dharmesh
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« Reply #64 on: August 09, 2014, 03:02:37 AM »

Here I should also mention that with Exjade we have seen tummy aches and acid reflux....and my daughter's doctor prescribed Zantac day and night instead of lowering her exjade dosage.
Make it SPLIT
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Andy Battaglia
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« Reply #65 on: August 11, 2014, 08:46:15 PM »

Poirot,

I missed some posts when I was out West for my daughter's wedding, and after returning and being swamped with work.

Thanks for the input about using Kelfer and Exjade together. I'm glad to see more centers using this with success. I agree that patients should not give up on Kelfer easily. It is a superb chelator, and those like you who have used it for two decades are living proof of its value. I feel ibuprofen is a good choice as it is excellent for inflammation. If one can manage without opiates, that should be done.
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Andy

All we are saying is give thals a chance.
Pratik
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« Reply #66 on: August 13, 2014, 01:41:13 AM »

Poirot,

I missed some posts when I was out West for my daughter's wedding, and after returning and being swamped with work.

Thanks for the input about using Kelfer and Exjade together. I'm glad to see more centers using this with success. I agree that patients should not give up on Kelfer easily. It is a superb chelator, and those like you who have used it for two decades are living proof of its value. I feel ibuprofen is a good choice as it is excellent for inflammation. If one can manage without opiates, that should be done.
Andy,

First of all a heartily congratulations for your daughter's wedding. Hope she has a wonderful and blessed life ahead!

Next, I am getting so much inspired and motivated seeing all these posts by veterans like Poirot and Dharmesh.

I took Kelfer for most of my life till 2008 when Exjade was introduced. Kelfer is very valuable yes but it also made my joints a little out of shape and I was suffering from joint pains every now and then.

A year or year and half ago too as you know, I tried to take again Kelfer but gave up after few days of pain. I think I need to learn to adapt to pain for a couple of months maybe while taking Paracetamol to manage it. After a few months, I am sure the results will be fruitful.

Andy, Dharmesh - What is your opinion, whether I should take Desferal and Exjade or maybe avoid needles of desferal for now and try again experimenting with Exjade with Kelfer? If latter is the case, what dose would be good for start of Kelfer and any advise or precautions?

Best,

-P.
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Dharmesh
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« Reply #67 on: August 13, 2014, 11:58:27 AM »

Dear Pratik,

It depends on ur T2* Score, whether u should add kelfer or desferal with Asunra
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Dharmesh
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« Reply #68 on: November 30, 2014, 02:08:25 AM »

Hello Andy and All

I am again here with latest T2*Score done on 27.11.14

Heart 5.64
Liver 270
Ferritin 1920

Previous report 14.06.12
Heart  7.11
Liver 370

Though liver score is improved but worried about Cardiac Score
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Andy Battaglia
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« Reply #69 on: November 30, 2014, 12:04:44 PM »

Again, I am skeptical on this result. Your ferritin is greatly lowered and the liver score improved. It makes no sense that the heart would get worse. How do you feel physically? Do you feel tired and weak? Does walking stairs tax you?
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Andy

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Dharmesh
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« Reply #70 on: November 30, 2014, 12:38:56 PM »

Yes i feel breathless while walking stairs as i am on hydrea and it is not improving my hb, my cutoff hb is 6gms%. Otherwise my appetite is improved significantly. I am up for 2D Echo... My ECG is showing no change
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Dharmesh
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« Reply #71 on: February 14, 2015, 12:51:51 AM »

Hi,
I am on Hydrea since last 11 months and my average bt duration is 3 weeks.
The attached CBC report is done before bt yesterday and last bt was done before 21 days.
I want to ask, is hydrea working?
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Andy Battaglia
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« Reply #72 on: February 14, 2015, 12:04:24 PM »

Dharmesh,

Do you have a previous CBC to compare? Have you had electrophoresis done at all during this therapy? I look for an increase in HbF to see if hydroxyurea is having any effect.
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Andy

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Dharmesh
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« Reply #73 on: February 15, 2015, 11:51:51 AM »

Hi Andy,
i have attached previous CBC reports. No Electrophoresis done before starting or during the therapy.
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Andy Battaglia
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« Reply #74 on: February 15, 2015, 01:00:46 PM »

Dharmesh,

It's not much to go by, but it doesn't seem like there has been much change, if at all. There is some mild fluctuation in the RBC, but not enough to indicate the reduced erythropoiesis desired.
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Andy

All we are saying is give thals a chance.
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