Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Dharmesh on September 05, 2012, 02:48:04 PM



Title: Start decreasing Fe
Post by: Dharmesh on September 05, 2012, 02:48:04 PM
Hi Dear Andybro,

My
S.Ferritin 10048 V/s 11452

Chelation Plan
4 Asunra in split dosage &
2 Desferal in night for 12 hours daily without fail.

Taken DESFERAL IV On Tx days.


Title: Re: Start decreasing Fe
Post by: Narendra on September 05, 2012, 05:01:45 PM
That's the way to go. This is the most important step for you to reduce the ferritin. Only you can control what you do. There are folks here who have done aggressive chelation and have got good results. Everything will fall in place once your levels are in control.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on September 05, 2012, 06:38:11 PM
It's good to see some positive results. Combination works best. It takes dedication and total compliance, but it's worth it.


Title: Re: Start decreasing Fe
Post by: Pratik on September 06, 2012, 05:41:53 AM
Asunra is also decreasing ferritin constantly for me currently, every time (every 42 days or so) by 250-400 when I was taking 1200. I've started 1600 since 20 days or so and hence I will see where I stand at during the next transfusion, after 16 days or so.

Great to see that Dharmesh.

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 06, 2012, 01:58:52 PM
Yes Dear Andy,
It's really good to see the Combo Effect, i was really in need of some good news.
Actually, i was unaware about DFX+DFO combo. before some months. As i read at THALPAL that since 2010 this combo is accepted and working i might have started early.
But it is better late than never.

@Dear Narendra,
Thanks for the words. I also want to achieve what has been achieved by others on this part.

@ Dear Pratik,
Thanks.
Your Fe is decreasing is good news but i think that it's going down slowly.


Title: Re: Start decreasing Fe
Post by: Pratik on September 07, 2012, 12:46:47 AM
Yes Dear Andy,
It's really good to see the Combo Effect, i was really in need of some good news.
Actually, i was unaware about DFX+DFO combo. before some months. As i read at THALPAL that since 2010 this combo is accepted and working i might have started early.
But it is better late than never.

@Dear Narendra,
Thanks for the words. I also want to achieve what has been achieved by others on this part.

@ Dear Pratik,
Thanks.
Your Fe is decreasing is good news but i think that it's going down slowly.

Slow and steady wins the race.  :wink  :biggrin


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 26, 2012, 02:42:13 AM
Hello to All,

I switched over to Defrijet (Deferasirox)  from yesterday from Asunra.
As i am on Asunra + Desferal Combo. of the same co. Novartis.
Does it make any difference or any side effects due to Defrijet + Desferal Combo, as Defrijet is made by another company(Sun Pharma, India).
I am advised by doc. not to take both these chelator (Defrijet and Desferal) simultaneously on the same day, but have to take both on alternate day.

Has anybody tried this combo? on the same day? simultaneously?

Dear Andy , any suggestion?


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 03, 2012, 01:26:30 PM
If my S.Ferritin get normal, What kind of the impact can be anticipated on Heamoglobin Level and Spleen Size?

Can I expect any reduction in Tx requirements and improvement in Heamoglobin?

 ???:frustrated :tantrum :banghead ???


Title: Re: Start decreasing Fe
Post by: Narendra on October 04, 2012, 12:35:55 PM
I am not an expert but with Ferritin levels decreasing, anyone will have a better life. There will be less Iron in the body and the damage it can do is removed from the body.

I think the spleen size depends on the HB levels. If a person has a very low HB, the spleen is enlarged (as is the case with many thal (Intermedias) who don't transfuse regularly.


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 04, 2012, 01:30:06 PM
Actually my requirement is increasing since last many years gradually from 2 units a month  to 3 units and now more than 4 units.
It doesn't make any difference to hb level if i transfuse 1 unit every week or 2 unit in 2 days one by one in every 2 weeks.
So i try to improve hb by transfusing more units in a month but it didn't help


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 17, 2012, 03:33:53 AM
Latest Report of S.Ferrtin dtd 15.10.2012

S.Ferrtin :

6454 Vs 10048


Title: Re: Start decreasing Fe
Post by: Pratik on October 17, 2012, 08:52:55 AM
Congrats Dharmesh, that's awesome.

How many hours a day are you on Desferal? Or do you think defrijet is more helpful than Exjade?

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 17, 2012, 12:37:20 PM
Dear Pratik,
Thanks.
Till last week desferal for 11 hours and 2 vials daily with some bunks.

Now. desferal for 14 to 15 hours and 3 vials but for 5 days a week.

Both are the same drugs but it is too short time m on defrajit to comment.


Title: Re: Start decreasing Fe
Post by: Bostonian_04 on October 17, 2012, 12:39:51 PM
Way to go Dharmesh...Really glad to see you are taking control of your health....Please continue to update us on your journey to get healthier...


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 17, 2012, 12:43:17 PM
Dharmesh,
 :congrats :congrats :congrats

Dear All,
I swear i haven't given bribe to lab technician for lower reporting

Hi hi hii hi :rotfl :love :stars


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 17, 2012, 12:45:23 PM
Hey Andy,
I got NATURAL Vitamin E 400 IU Mix tochopherol from GNC-India's Indian website.

Thanks



Title: Re: Start decreasing Fe
Post by: Andy Battaglia on October 17, 2012, 07:01:46 PM
 :thumbsup  :thumbsup  :thumbsup

Nothing will encourage you more than seeing results like this. Keep up the good work. I am quite pleased.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 21, 2013, 02:03:12 AM
Hello Dear Andy, P and all Friends,

You will be happy to know that it is another reduction in Fe level

Fe done on 18.02.2013 comes to 5454 Vs 7590

Chelation regime

2000 mg Asunra and
3-4 vials Desferal for 12-14 hours 75 vials, 500mg each in a month


thanks for the support friendss


Title: Re: Start decreasing Fe
Post by: Pratik on February 21, 2013, 04:26:57 AM
Hello Dear Andy, P and all Friends,

You will be happy to know that it is another reduction in Fe level

Fe done on 18.02.2013 comes to 5454 Vs 7590

Chelation regime

2000 mg Asunra and
3-4 vials Desferal for 12-14 hours 75 vials, 500mg each in a month


thanks for the support friendss
Great, congrats!  :woot :yaaaaaay


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 21, 2013, 09:02:24 AM
Good work! You are saving your own life and will find it gets easier and easier as the iron drops.


Title: Re: Start decreasing Fe
Post by: Dharmesh on May 25, 2013, 01:55:21 AM
Hi,

Latest Fe Reports...5350
Last report ...5454
 :(  :huh

No significant reduction in Fe... inspite of increase in dosage


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on May 25, 2013, 12:51:15 PM
Stay with your program and keep confidence that it is working. It takes 17 months just to remove half the iron from your heart at full chelation. You have made real progress. Don't be disappointed by ferritin tests. Have you had a heart T2*?


Title: Re: Start decreasing Fe
Post by: Dharmesh on May 26, 2013, 01:36:57 AM
Ya.
Definitely i am feeling better.

My T2* MRI done in June last year.

Cardiac T2* Score is 7.2

Liver T2* Score is 370

I am planning for splenectomy due to heavy blood consumption 4 units each month approx 1000 to 1200 ml


Title: Re: Start decreasing Fe
Post by: Dharmesh on August 26, 2013, 02:10:11 AM
Hello Andy Bro,

I have Re-started my chelation with Defrijet 500 from this Friday

In split dosage with 20mg/kg

i will increase the dosage to 30mg/kg after 2 weeks.

Also want to Re-start desferal soon

Hope now my Fe will start scooba diving  :rolleyes

I took bt after 45 days of surgery , pre bt was 7.6 gm/dl


Title: Re: Start decreasing Fe
Post by: Pratik on September 02, 2013, 12:07:21 AM
Hello Andy Bro,

I have Re-started my chelation with Defrijet 500 from this Friday

In split dosage with 20mg/kg

i will increase the dosage to 30mg/kg after 2 weeks.

Also want to Re-start desferal soon

Hope now my Fe will start scooba diving  :rolleyes

I took bt after 45 days of surgery , pre bt was 7.6 gm/dl
I hope you are feeling well D. We both will get our Fe rigorously down now!  :biggrin

All the best.

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 06, 2013, 03:08:36 AM
Hello,

I have raised the dosage of defrijet to 30mg/kg from this 3rd.

I will add some desferal after checking CBC, LFT, RFT in next week.

Also , want to start Ecosprin 75mg but thinking that it may hurt the healing so undecided for a re-start.

Any suggestion , Andybro?



Title: Re: Start decreasing Fe
Post by: Andy Battaglia on September 06, 2013, 09:36:59 PM
Ecosprin is an Nsaid drug, and you have to be cautious combining Nsaids with deferasirox, because it increases the possibility of stomach bleeding.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 07, 2013, 01:48:53 AM
Andy,
Then what precautions to be taken?

As my platelet is 12.4Lakhs how to dealt with it?

The healing process after splenectomy is still going on and it will take more several months

Please guide


Title: Re: Start decreasing Fe
Post by: Pratik on September 07, 2013, 01:53:59 AM
Ecosprin is an Nsaid drug, and you have to be cautious combining Nsaids with deferasirox, because it increases the possibility of stomach bleeding.
Woah.

I've took sometimes in past. Just few times when I thought my heart was going weird LOL.

Is it a problem (just to take a note in future for my reference) if we time couple of hours the interval between defrasirox and ecosprin?

Best,

-P.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on September 07, 2013, 09:38:57 AM
I would suggest using these Nsaids in moderation only. If there is any indication that Hb is dropping faster than normal, Asunra should be stopped and the patient examined for internal bleeding.

It takes some time after splenectomy for platelets to drop. Make sure you're taking vitamin E to help prevent clotting. The level will normally continue to drop and eventually reach the normal range.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 07, 2013, 09:59:40 AM
Dear Andy,

In moderation means that i can take Ecosprin in low dosage e.g. 75mg every alternate day?

I am not taking Vitamin E as natural one is costly
and synthetic one is not advisable


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on September 07, 2013, 10:37:58 AM
Yes. in moderation. If there are any sudden drops in Hb, stop using it immediately.

All thals should take vitamin E. That should be the first supplement considered. But after splenectomy, while the platelets are high, it is even more important.

I think some of the Indians should work together and form a buying club to order supplements, so they can be made available and affordable.


Title: Re: Start decreasing Fe
Post by: Pratik on September 08, 2013, 02:22:46 AM
Dharmesh,

I'll try to make an arrangement for you for Vitamin E (Natural) soon.

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 09, 2013, 06:04:39 AM
Dear Pratik,

How?

R U buying from GNC-India?


Title: Re: Start decreasing Fe
Post by: Pratik on September 09, 2013, 02:17:20 PM
Dear Pratik,

How?

R U buying from GNC-India?
I actually order from Puritan but its still not received and my stock is about to get empty. I have natvie still as a replacement which I use in cases like these. Either is fine. I'll try to send you Natvie soon D. Or if not that, I'll try to get GNC ship directly to you provided they've stock.

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 10, 2013, 07:28:49 AM
Pratik,
don't use Natvie as it is containing Nonveg content

Second,

I have started using Evion LC. so now please don't send it to me.

Thanks for ur caring concern.


Title: Re: Start decreasing Fe
Post by: Pratik on September 10, 2013, 01:28:30 PM
Pratik,
don't use Natvie as it is containing Nonveg content

Second,

I have started using Evion LC. so now please don't send it to me.

Thanks for ur caring concern.
I eat eggs though. Does it contain anything else other than egg?

D, not a problem. I'll ship you GNC through online if its available. Please PM me with your address. That's the least I could do. Part of my goal to do from my earnings is to support fellow thals so I really will be happy to help all I could. That's an order, not a request. Now send me your address. :)

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on September 11, 2013, 11:04:12 AM
Dear Pratik,

Glad to know ur concern about me and for fellow thals. I really APPRECIATE it. :hugfriend

But it is the principal established by my Father that we never have to accept any kind of help from anyone for my treatment.

FYI he was running Rajkot Thal Patient's Parent's Association (RTPPA) and had never used trust's money for treatment of mine.

And let me tell u that my father is enough capable to bring all the medicines needed. But i dont want to spare some extra money for this branded and imported one GNC for sometime.

Moreover,

If u want to help some fellow thals there are so many who really need financial help. U just have to look around to help them





Title: Re: Start decreasing Fe
Post by: Dharmesh on September 27, 2013, 03:00:53 AM
Hello Andy,

Now my Chelation program is updated as below

Deferasirox 2000mg daily in split dosage

Desferal 2000mg S.C. at a time for 20 hours. Trying to take more than 25mg/kg desferal in a month.

Hope it will get rid of iron as required.

What u say, is it ok?


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on September 27, 2013, 11:36:22 AM
Your program should work well, Dharmesh.


Title: Re: Start decreasing Fe
Post by: Dharmesh on October 12, 2013, 05:08:07 AM
I have added kelfer to my chelation regimen for 2 days/week @ 30mg/kg dosage


Title: Re: Start decreasing Fe
Post by: Dharmesh on November 20, 2013, 04:39:16 AM
My Latest Fe report done on 18/112013  -  5070ng/ml

Last done in June - 5350 ng/ml


Title: Re: Start decreasing Fe
Post by: Pratik on December 04, 2013, 11:00:39 AM
My Latest Fe report done on 18/112013  -  5070ng/ml

Last done in June - 5350 ng/ml
Considering the volume you transfuse, its still very positive report, not like mine. Congrats! :)


Title: Re: Start decreasing Fe
Post by: Dharmesh on December 05, 2013, 01:33:25 AM
Nope P

Now I am splenectomised and do not required the volume like before splenectomy.


Title: Re: Start decreasing Fe
Post by: Pratik on December 07, 2013, 08:08:30 AM
Nope P

Now I am splenectomised and do not required the volume like before splenectomy.
Oh, it's still nice to hear about that. What is your transfusion frequency at the moment, and how much volume (CC)?

I'm positive you'll see the benefits of less transfusions and thereby more iron removal very very soon!

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 03, 2014, 01:30:39 AM
Now my ferritin is 3880 ng/ml :biggrin

it was 5070ng/ml before 2 months in november.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 03, 2014, 08:59:04 AM
 :thumbsup


Title: Re: Start decreasing Fe
Post by: Sara76 on February 03, 2014, 06:19:14 PM
That's great news, Dharmesh! Keep up the hard work! :yaaaaaay


Title: Re: Start decreasing Fe
Post by: Pratik on February 16, 2014, 01:26:08 AM
Now my ferritin is 3880 ng/ml :biggrin

it was 5070ng/ml before 2 months in november.
Wow Dharmesh! You made it! I am so happy for you.

Is this also due to low transfusion frequency after the splenectomy? How often are you transfusing since a month or two? :)

Once again, GREAT WORK!  :dunno

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on April 16, 2014, 01:22:57 AM
Latest Ferritin 2770 ng/ml(9.04.14)  Vs 3880 ng/ml (31.1.14)

All the 3 chelators are used for last 7 months from sept.

Now onwards i will be using both the 2 oral chelators ie. Kelfer and Defrijet


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on April 16, 2014, 08:52:07 AM
Great progress!


Title: Re: Start decreasing Fe
Post by: Sara76 on April 16, 2014, 10:58:23 AM
That's wonderful news! Keep up the good work!

:yaaaaaay :congrats

Suelou


Title: Re: Start decreasing Fe
Post by: Pratik on May 08, 2014, 10:39:05 AM
Dharmesh,

Wonderful progress buddy. So happy for you!

-P.


Title: Re: Start decreasing Fe
Post by: Dharmesh on July 17, 2014, 02:27:35 AM
Hello Andy and all,

Once again my S.Ferritin comes down to 1630 ng/ml (last report 2770 ng/ml)

I am thinking to go for T2*MRI within some months..but don't hope any good news in that MRI



Title: Re: Start decreasing Fe
Post by: Pratik on July 18, 2014, 04:06:41 AM
Dharmesh,

Awesome man, that deserves serious salutations!

For me, I am still playing around 4900. No matter how hard I push with Exjade, it just revolves around basically 4500-5400. Andy, any help on this?

I'm thinking to now start Desferal too along with Asunra/Exjade. Dharmesh, what combination you did and how much? For me, taking kelfer/defriprone causes ache in my joints unfortunately so I can't do that as well.

-P.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on July 19, 2014, 07:32:01 PM
Pratik,

I think combination chelation will be needed for a while. Adding desferal would help a lot. I asked some of the doctors in the US about the joint pains and they replied that they do not take patients off of deferiprone because of joint pain, but rather they treat the pain with an analgesic like ibuprofen.


Title: Re: Start decreasing Fe
Post by: Dharmesh on July 21, 2014, 08:48:38 AM
Dharmesh,

Awesome man, that deserves serious salutations!

For me, I am still playing around 4900. No matter how hard I push with Exjade, it just revolves around basically 4500-5400. Andy, any help on this?

I'm thinking to now start Desferal too along with Asunra/Exjade. Dharmesh, what combination you did and how much? For me, taking kelfer/defriprone causes ache in my joints unfortunately so I can't do that as well.
-P.
We all are aware that Asunra is inadequate for severe iron overload. i read it somewhere in thalpal itself.
so alone asunra is waste of time.
i also had joint pain due to kelfer in past. inspite of it i am using kelfer 2 days a week (prescribed for 3 days a week)along with defrajet.
U can meet hemo in vadodara for this purpose


Title: Re: Start decreasing Fe
Post by: Pratik on August 01, 2014, 06:31:47 AM
We all are aware that Asunra is inadequate for severe iron overload. i read it somewhere in thalpal itself.
so alone asunra is waste of time.
i also had joint pain due to kelfer in past. inspite of it i am using kelfer 2 days a week (prescribed for 3 days a week)along with defrajet.
U can meet hemo in vadodara for this purpose
Dharmesh,

Hemo in Vadodara (Seema Bhatwadekar) just drives me nuts. I went back in 2009 when I had osteoporosis and she didn't even knew the medicine for sickle cell and lot of other basic info which even 10 year old thal could point out!

Though there are other great doctors. Was your dosage decided by some Hemo or Pediatric or you decided on your own? I am planning to start on desferal pretty soon and I may need some guidance. Might give you a call as well if needed!

Best,

p.


Title: Re: Start decreasing Fe
Post by: Dharmesh on August 05, 2014, 03:31:23 AM
Dear P,

I hv never met Dr SB but i have referred a patient to her...
And that patient is quiet happy with the treatment and she added desferal with dfx and getting good results.
So when we remain in touch with any doc continuously... they try to give us better treatment plan according to our need..

and i wonder why u wanted to know a medi of sickel cell from her?

Currently my dosage are decided and prescribed by Dr Vijay Ramanan Sir. and i stay in touch with Andy, JS for the purpose. And last but not least.. i am boss of my own...so final decision is taken by me based on advise.

U can call me whenever u think fit!!
 


Title: Re: Start decreasing Fe
Post by: Bostonian_04 on August 05, 2014, 03:39:03 PM
Dharmesh,

great job in reducing your ferritin.  :clap


Title: Re: Start decreasing Fe
Post by: Dharmesh on August 07, 2014, 04:50:01 AM
Thankyou Bostonian :biggrin :biggrin


Title: Re: Start decreasing Fe
Post by: Poirot on August 08, 2014, 01:17:16 AM
Dharmesh,

This is great stuff  :thumbsup :thumbsup :thumbsup

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


Title: Re: Start decreasing Fe
Post by: Bostonian_04 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.


Title: Re: Start decreasing Fe
Post by: Dharmesh on August 09, 2014, 03:01:54 AM
Dharmesh,

This is great stuff  :thumbsup :thumbsup :thumbsup

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.


Title: Re: Start decreasing Fe
Post by: Dharmesh 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


Title: Re: Start decreasing Fe
Post by: Andy Battaglia 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.


Title: Re: Start decreasing Fe
Post by: Pratik 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.


Title: Re: Start decreasing Fe
Post by: Dharmesh 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


Title: Re: Start decreasing Fe
Post by: Dharmesh 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


Title: Re: Start decreasing Fe
Post by: Andy Battaglia 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?


Title: Re: Start decreasing Fe
Post by: Dharmesh 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


Title: Re: Start decreasing Fe
Post by: Dharmesh 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?


Title: Re: Start decreasing Fe
Post by: Andy Battaglia 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.


Title: Re: Start decreasing Fe
Post by: Dharmesh 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.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia 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.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 16, 2015, 01:47:42 AM
Dear Andy,
It means Hydrea not working? even i am willing to discontinue it now :(


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 17, 2015, 09:41:54 AM
How long have you been taking hydroxyurea, Dharmesh?


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 18, 2015, 03:42:55 AM
Dear Andy,

It's total 11 months, i started in March 14 March 2014 with low dosage aprox 10mg/kg. And since last 2 months i am on full dosage 20mg/kg.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 22, 2015, 07:47:43 AM
Dear Andy,
Any suggestion?


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 23, 2015, 09:49:33 AM
I don't see any evidence that it is helping. By 11 months, you should have seen some increase in Hb level.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 25, 2015, 09:36:29 AM
Dear Andy,
I have a point in my mind.
Is MCV a point to consider? My MCV level is remaining in normal range in spite of very low hb upto 5.6gms%.
However hb is not increasing.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 26, 2015, 09:10:20 AM
How often are you transfusing?


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 27, 2015, 11:32:39 PM
Dear Andy,
The average bt duration is 3 weeks with hydrea.
It was 2 weeks before hydrea


Title: Re: Start decreasing Fe
Post by: Dharmesh on March 04, 2015, 06:57:55 AM
Dear Andy,
CBC report on Dt27.02.2015 shows Normal MCV level 84.95 cu.micron (normal range 82-92) with Hb 5.7gms% only.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on March 04, 2015, 09:05:58 AM
Dharmesh,

A CBC in a transfusing patient is not of much value, as it reflects the state of the transfused blood. MCV etc will usually show normal when regular transfusions are taken.

If your transfusion frequency has decreased with hydroxyurea, then continue it for a while to see if there is anymore progress. Make sure you take wheatgrass with it and also add magnesium and L-carnitine if you have not already done so.


Title: Re: Start decreasing Fe
Post by: Dharmesh on March 05, 2015, 01:31:07 AM
Dear Andy,

I will try to get Hemoglobin electrophoresis done in addition to CBC. I know it should have been done before starting the therapy but Dr hadn't advised and i didn't make it done.

In addition , i am taking Wheatgrass Tablets daily 15 tabs of 500 mg each (Lol its huge dosage) and have already started L-Carnitine and Magnasium.
And yes my transfusion frequency has decreased to 3 weeks from 2 weeks but no increase in Hb seen.

However, Dr R has prescribed me Thalidomide in addition to Hydrea


Title: Re: Start decreasing Fe
Post by: Dharmesh on June 09, 2015, 07:03:29 AM
Hi,

My Latest S. Ferritin level comes to  606 ng/ml :biggrin


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on June 09, 2015, 09:40:12 AM
Fantastic, buddy! Hard work has its rewards.  :biggrin


Title: Re: Start decreasing Fe
Post by: Himanshu Kumar on June 09, 2015, 09:46:13 AM
Really good to hear. Have your hb and transfusion period improved too?


Title: Re: Start decreasing Fe
Post by: Lokkhi maa on June 09, 2015, 09:38:39 PM

606 !!! Congrats HANUMANT  :yahoo :yahoo :cheer :clap :jumping :love :thumbup


Title: Re: Start decreasing Fe
Post by: Sharmin on June 09, 2015, 11:04:20 PM
So so happy to hear!  It's takes constant dedication and perseverance but it is so worth the benefits it will have on your health!  Keep up the great work!


Title: Re: Start decreasing Fe
Post by: Dharmesh on June 10, 2015, 01:26:24 AM
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?

Dear Andy,

I found out the answer as to why my Cardiac T2*Score get worsen?

Below is the answer from guideline issued by TIF recently

"Iron overload
In many patients the size and iron load of the spleen approaches that of the liver, highlighting
the importance of the spleen as a major organ of iron storage in TM. Splenectomy causes
major changes in the ferrikinetic profile of iron overload and toxicity in β-ΤΜ patients. Following
splenectomy the total body iron storage capacity is reduced. Iron will be redirected and
accumulated in the liver, heart, and other organs and unless effective chelation protocols are
introduced, the iron concentration in these organs will increase (Aydinok 2011, Aessopos 2005,
Fiorelli 1990)
In a separate study splenectomised patients had a higher incidence of myocardial iron load
(48%) and higher myocardial iron by comparison to non- splenectomised patients (28%) (Aydinok
2011)."

Hope now my T2*Score will improve as the ferritin level comes to normal level


Title: Re: Start decreasing Fe
Post by: Dharmesh on June 10, 2015, 01:27:30 AM
Really good to hear. Have your hb and transfusion period improved too?

No


Title: Re: Start decreasing Fe
Post by: nice friend on June 23, 2015, 04:39:33 PM
:congrats hanumant .. .really happy  to see your strugle against Fe level ...  :thumbsup


Title: Re: Start decreasing Fe
Post by: Dharmesh on July 16, 2015, 08:24:36 AM
Hello,

This is a deeply disappointing time for me as inspite of decreasing ferritin to a remarkably low level LVEF decrease to 40%.

Trying to NOT loosing hope !!

Currently taking chelation @50mg/kg defrijet earlier it was 40mg/kg &
Kelfer increased to 60mg/kg daily from 75mg/kg thrice a week.

Need a miracle


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on July 16, 2015, 01:08:07 PM
Can you take kelfer daily?


Title: Re: Start decreasing Fe
Post by: Dharmesh on July 17, 2015, 01:32:30 AM
Dear Andy,

I have already started taking Kelfer daily @60mg/kg from this week.

Earlier i was taking Kelfer @75mg/kg thrice a week.


Title: Re: Start decreasing Fe
Post by: nice friend on August 07, 2015, 03:49:46 PM
hanumant,
dont lose hope budy ,,, my ferritin was 13000+ at a stage of life ,, and at that time my SGPT was 612 ... it takes an 15 months to get the fe within normal range ... if i can do it ,, then u too man .. keep it up  :thumbsup


Title: Re: Start decreasing Fe
Post by: Dharmesh on December 24, 2015, 08:37:57 AM
Some Happy updates on Christmas  :yahoo

My Ferrtitin is 477 ng/ml

Cardiac T2* Score 8.32 = Iron Moderate

Liver T2* Score =  Iron None

On Thalidomide , Wheatgrass

No blood transfusion since last 4+months

 :yahoo


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on December 24, 2015, 08:59:47 AM
Wow! Keep going. The heart is last to get cleaned and you're on the path to success. Great job!   :thumbsup


Title: Re: Start decreasing Fe
Post by: Canadian_Family on December 24, 2015, 11:07:10 AM
Some serious aspiration for our members.


Title: Re: Start decreasing Fe
Post by: Lokkhi maa on December 25, 2015, 08:41:21 PM

 :congrats


Title: Re: Start decreasing Fe
Post by: Lokkhi maa on December 25, 2015, 08:47:15 PM

Hello Andy,

If SF level is high then its effect the hb level ?


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on December 26, 2015, 03:15:04 PM
Interesting question, Lokkhi. Free iron circulating in the blood does damage red blood cells, so lowering the iron load does have a psoitive effect on Hb level.


Title: Re: Start decreasing Fe
Post by: Lokkhi maa on December 26, 2015, 09:20:11 PM

Thanks for reply Andy.

As I know may be after 3 months red blood cells are changes by breaking and create new continuously.Is there any supplements,medicines or natural remedies which will help to keep the red blood cells ...


Title: Re: Start decreasing Fe
Post by: Himanshu Kumar on December 27, 2015, 10:54:33 AM
Some Happy updates on Christmas  :yahoo

My Ferrtitin is 477 ng/ml

Cardiac T2* Score 8.32 = Iron Moderate

Liver T2* Score =  Iron None

On Thalidomide , Wheatgrass

No blood transfusion since last 4+months

 :yahoo


This is an incredibly great news. Possibly goes to suggest that thalidomide + wheat grass combination effect is slow but definite. May be the combination works best when the iron accumulation is lower.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on December 27, 2015, 09:08:22 PM
Lokkhi,

A good nutritious diet and supplements like wheatgrass, vitamin E, B vitamins, folate and magnesium are needed to build and maintain healthy red blood cells. 


Title: Re: Start decreasing Fe
Post by: Eagle on February 15, 2016, 02:23:23 PM
Wow! This is a case study that should be given to every thal!
Amazing work Dharmesh! Truly motivated after reading your story.



Title: Re: Start decreasing Fe
Post by: Dharmesh on February 16, 2016, 12:06:38 AM
Glad to know that it helped you.

Thanks !!!

For iron chelation i have only one motto

"Fire in the hole"


Title: Re: Start decreasing Fe
Post by: Dori on February 16, 2016, 03:45:02 AM

CONGRATULATIONS!



Title: Re: Start decreasing Fe
Post by: Dharmesh on February 16, 2016, 10:50:01 PM
Thanks Dori.

Happy to see you again


Title: Re: Start decreasing Fe
Post by: Dori on February 17, 2016, 01:38:10 PM
Thanks Dori.

Happy to see you again

Likewise! I just achieved similar results. I do not have  iron overload in the liver. I take Exjade / Ferriprox. Are there studies underway? A lot of people seem to be afraid to try something off label. (which I can understand but...) My ferritin is yet a little bit too high to share here ;)
Thanks to Nice Friend for telling me to see my friends from this beautiful community.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 18, 2016, 06:04:32 AM
http://www.thalassemia.org/learn-about-thalassemia/clinical-trials/

http://thalassemia.com/research-open-studies.aspx#Fertility&gsc.tab=0

above are the studies and ongoing research, unable to give u specific ans.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 18, 2016, 06:46:36 PM
Some centers in the US use the Exjade/Ferriprox combination. They have had great success with it and find it works as well as desferal and Exjade together. Doctors don't actually have to wait for completed trials.


Title: Re: Start decreasing Fe
Post by: Dharmesh on February 19, 2016, 02:03:01 AM
Andy,
Recently a mumbai based Clinical hemo. told us in seminar that now First line of treatment is DFX and when it stays ineffective they use DFP as second line of treatment. So the Exjade and Ferriprox combo is widely acceptable in medical fraternity.
The results are excellent.


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on February 21, 2016, 08:21:44 PM
Good to know. The combination works well. Doctors refusing it to patients are doing them a disservice.


Title: Re: Start decreasing Fe
Post by: djema on May 18, 2016, 07:42:44 PM
Hello friends
thank you that You exist here .
yesterday has received analyses of ferritin for my daughter , the results of the us upset 3060 , 2 months ago was 2970 !
Read Your posts , Your advice and the results are very important for my daughter. We learn from You how to fight , thank You friends .
My questions -
what is the remedy for Kelper? what is it?
1000mg of Exjade , folic acid, vitamins , hydrea 1 capsule it takes Aysel daily .
what you need to do more? it is important to reduce the ferritin !
daughter is 11 years old, weight 28-29 kg of transfused blood every 3-4 weeks .
PS sorry for the mistakes . I do not know English .


Title: Re: Start decreasing Fe
Post by: Dharmesh on May 19, 2016, 03:36:34 AM
Hello,

There seems no difference in Ferritin reports i.e. 2970 and 3060 as ferritin is highly sensitive.
However, it should be repeatedly monitored.

Kelfer is another iron chelator just like exjade

To reduce the ferritin dose should be adjusted as weight, blood requirement and ferritin increase/decreases.

Report is in Russian so commenting on it is difficult.

Thanks for the appreciation


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on May 19, 2016, 06:19:58 PM
Split the dose of Exjade and have her take 500 mg in the morning and 500 mg later in the day. This will provide more chelation without raising the dose. Make sure no doses are missed. If she has trouble taking the drug in liquid, it can be crushed and mixed with most soft foods. It is most important that every dose be taken.


Title: Re: Start decreasing Fe
Post by: djema on May 20, 2016, 07:13:53 AM
Hello friends.
thank You for the answers.
Yes ,we are taking Exjade 500 mg morning and 500mg in the evening.
every day. used to miss a medication
health to you all !
 :grouphug


Title: Re: Start decreasing Fe
Post by: Dori on May 21, 2016, 11:34:56 AM
I wish your daughter good health and decreasing ferritin reports.
Splitting the dose work very well. With Exjde ferritin sometimes increase before it decrease. That is normal. However, I hope it decrease soon.
Best wishes!


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on May 21, 2016, 02:46:21 PM
It takes time to clean up the iron load. Continue with her chelation faithfully, but don't expect to see immediate results. Exjade works in the organs and tissue first, so you will not see a reduction in ferritin until the more dangerous iron has been removed.


Title: Re: Start decreasing Fe
Post by: Dharmesh on May 22, 2016, 09:28:57 AM
If dosage are skipped regularly than it is better to give it once


Title: Re: Start decreasing Fe
Post by: djema on May 23, 2016, 01:41:27 AM
Hello friends ! thank You for your support.
Health to All of You , You are the best !!!
Exjade noise rarely .
drink regularly to speak ))) :blush
thank You .
Jamal :bighug


Title: Re: Start decreasing Fe
Post by: Dharmesh on April 13, 2017, 09:33:33 AM
Hi Andy and All,
M back after a long.
Feeling nice after coming here back.... :biggrin

On 23rd April, Dr M B Agarwal mumbai based hemo. coming to Rajkot for a Seminar.
If anyone has any question please post i wiil try to get the answer from him.

P.S. Dr Agarwal is well known hematologist in India for thalassemics


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on April 13, 2017, 07:23:51 PM
I was fortunate enough to meet Dr Agarwal at the Pune conference in 2005. I'd like to know if he sees continued progress in blood supply safety in India.


Title: Re: Start decreasing Fe
Post by: Pratik on April 17, 2017, 11:29:39 AM
Hi Andy and All,
M back after a long.
Feeling nice after coming here back.... :biggrin

On 23rd April, Dr M B Agarwal mumbai based hemo. coming to Rajkot for a Seminar.
If anyone has any question please post i wiil try to get the answer from him.

P.S. Dr Agarwal is well known hematologist in India for thalassemics
Dharmesh,

Dr Vijay Ramanan is also hosting a conference in Surat on 24th at place of the child who is 8 months free from transfusion too. My dad is going to go. Are you coming? And guess what, who switched the sides? Dr. Nikhil Sheth will be visiting too. :D


Title: Re: Start decreasing Fe
Post by: Dharmesh on May 22, 2017, 01:07:59 PM
I was fortunate enough to meet Dr Agarwal at the Pune conference in 2005. I'd like to know if he sees continued progress in blood supply safety in India.
Dr M B Agarwal emphasized on taking blood tasted by NAT method.


Title: Re: Start decreasing Fe
Post by: Pratik on May 26, 2017, 05:51:52 AM
Dr M B Agarwal emphasized on taking blood tasted by NAT method.
What is NAT method?

Edit - Saw your reply in another topic. Got it!


Title: Re: Start decreasing Fe
Post by: Asma Jamal on January 10, 2019, 09:11:56 AM
Hi,
Congratulations Dharmesh for ur consistent efforts. Ur journey is truly inspirational!!

I have the same problem of high level of iron. Its around 15000.
But my Dr has always advised me to take desferol for iron chelation. Thy are not giving me any oral chelators which i hav always requested them for. But thy hav always denied to give me asunra or kelfer. My iron level is increasing.. uncontrollable!! :(
Plz guide me how shud i reduce my iron? Shud i start the combination therapy my self??

Secondly, since past few years i hav spleen issues. My frequency of transfusions is 2 units every 2 weeks. My platelts are vry low. 13 thousand only & some times even less.
Now my dr hav allowed me to go for spleenactomy. So currently im planning for it.
Plz guide me abt wht precautions i need to take pre and post spleenactomy??

Andy, Dharmesh,.. plz guide

Asma


Title: Re: Start decreasing Fe
Post by: Andy Battaglia on January 21, 2019, 04:43:54 PM
 You need combination chelation. Your ferritin is too high to handle with just one chelator. Any competent thalassemia doctor will tell you that. If you can manage to get the oral chelator, I can advise you on dosage.

How large is your spleen? Do you take folate?