especialy to Andy question abt chelation

Manal ,
Thanx for the encouragement .. encouragemtn is sumthing wat that pushed me forward to make it possible  .... .... otherwise it was really hard to start and then continue with that chelation therapy .. the support , encouragement and everything u all sent my way that is really really appreciatable ...i m soo proud to know this forum and all the members of this forum .. .....

@ topic ,
Sajid :
 i dont have words to write sumting abt him , i dont know how to xplain how much he helped me starting with pump .... he was the person who gave me break on this forum and pushed me forward to stick with this forum .. i m really missing him alot ..... May his soul Rest in peace and ALLAH (God) grant him high ranks in Jannat (heaven) , Ameen ...
Umair

Hello Umair,

Congratulations on your Ferritin value.A big applause for your efforts with dedication   .

Thats an amazing news that you brought down your serum ferritin from 13,000 to 400 approx.kuddo to your efforts  .

God Bless you, Umair.

I need some advice from you ,Andy and other friends you were able to keep a check on their Ferritin levels.

My daughter samyuktha, 3.5 years old ,12.30 kg weight had her ferritin count at 2181 ng/ml on January 2010.She is on Asunra 200mg for more than a year now.Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks.She decided to reduce the dosage back to 200mg.But still her SGPT level remained above the normal range.We took her LFT  last week.The values were;

serum creatinine= 0.8 mgs/dl

SGOT= 88.0 U/L

SGPT= 110.0 U/L

To my utter dissappointment her Ferritin has jumped from 2181ng/ml to 2944.4 ng/ml   .

I am so worried.I am planning to see her haematologist coming Monday with the reports.Samyuktha will be starting her schooling from June.I wanted her Ferritin to be below 1500 ng/ml . But....

Friends kindly help me in bringing down her ferritin values.what should i do?

The dosage of Asunra is only half of what is needed, so the ferritin will not drop. Her serum creatinine is within normal range and this is the more important indicator when monitoring Asunta or Exjade. The sgpt and sgot are elevated but, not into a danger zone (5 times normal readings). What were her sgpt and sgot before you reduced the Asunra dosage? Has there been much change since the dose was lowered?

excellent work omair buddy ... you r an ideal for those Fe ranges to me..i really envy you on that ... and you would be the first person who wud b crowned by me when i'll attain those levels just cuz of u ... luv u

Samyuktha,
1st of all , Thank you very much ... it took time and effort but in the end it all the time and efforts turned into a good results ,...
Asunra/Exjade :
Andy has said all about that, i m not aware of that as much as Andy is ,  bcoze i never been on Exjade/Asunra .... i was on Combination therapy of Desferal and Ferriprox ... 9 tablets of Ferriprox and 4-5 desferal a day, 6-8 days between 2 transfusions ( 6-8 days out of 12 ) ... all details of my Chelation plan is available in this thread... as i have been on combination therapy and got amazing result in short time and that never been problamtic to me , no side effects , no  neutropenia nothing else .. so to my point of view that is a better thing than anything else ... if ur daughter weight is around 30 kg then 20mg/kg = 600mg asunra .. according to that you're were way short a proper dose .... so ,  Andy is right  .. but on the other hand the fact u mentioned in ur post :

She is on Asunra 200mg for more than a year now.[bgcolor=#FFFF00]Her Doctor had increased her Asunra dosage from 200 mg to 400mg/day in the month of January .There was an alarming rise in her SGPT and Creatinine levels with in 2 weeks[/bgcolor].

that is sumthing to think abt ... i think her LFT bfore increasing the dose and after reducing back the dose wud b helpful ...

(again.... its just my views on Asunra , i m not an experienced member i just know abt combination therapy bcoze i have been through that ... and in my view that is the best therapy if that suit's you)

Best Regards
Take Care
Umair

Waleed,
Thanx , Buddy ... thanx alot .. i m waiting to b crowned ASAP , dear .. not bcoze i want to b crowned  , just bcoze i want to hear from you that you got the same Fe report too as mine is .. eagerly waiting for that time , Yaar ( buddy ) ... i hope , wish , and pray that time come ASAP (Ameen) ... for me it  is more nice feeling to know that someone started chelation just bcoze to know and see that its possible to get Fe within normal range doesn't matter how high it is, than of being crowned  .... so, its a nice feeling for me to know that my effort to share everything related to my chelation plan and all other treatments is paying off  .... best of luck ,Waleed ..

Umair

Hi Andy,

when her Asunra was reduced from 300mg to 200 mg ,her SGPT reduced from 80 TO 75 U/L

her creatinine too reduced from 0.8 to o.5 mgs /dl .

Her Ferritin has been fluctuating between 2000 to 3000 ng/ml for the past 1 year with Asunra.

Till she was 2 years old she was getting Desferoxamine thro IV after transfusion.She gets transfusion once every 5 weeks.when she was having desferoxamine,there was no side effects though.I need your advice on what is good for my little angel.

Help me Andy bro...

Regards,

viji

Viji,

what about ferriprox or kelfer? Has she ever been on ferriprox treatment?

High dosages of exjade are more possible to have side effects.It would be better to stick on low ones together with something else(ferriprox or desferal). What does the doctor say about a combination treatment?

Andy,

correct me if I am wrong...I have noticed that side effercts of exjade are more common in small kids instead of adults... is that the case?

Lena.

Viji,

The good thing is that today's thals do have choices, and the knowledge that the choice made today does not have to be the permanent course of action. If you are uncomfortable with Asunra at this time, it may be best to consider a temporary switch to another chelator, or a combination of chelators, where the dosage of each is less than what would be required of one chelator, alone. Would your doctor be willing to try kelfer at this age? Daily kelfer and desferal a couple times per week could be tried to see how her ferritin level responds. Another possibility would be to take a month off from Asunra and replace it with desferal. After one month, try re-introducing Asunra, and see if the creatinine and liver values are more stable this time. Keep in mind that most patients do see a rise in these values while using Exjade, so don't be too alarmed. If creatinine goes 33% higher than normal, it must be stopped immediately. Small increases should not be alarming. The small change in SGPT is not significant at all, and you will see this type of difference in level just by testing at different times of day.

Lena, you bring up an interesting point and one that again goes to less than forthcoming nature of Novartis on the subject of side effects of Exjade. Officially, Exjade has shown no different results in young children than in adults, but the anecdotal evidence we hear seems to imply that young children do have more problems with Exjade, than do older patients. We have nothing official to go by, but caution may be wise.

Viji, my advice is to take a short break from Asunra, and replace it with desferal for one month. Also, talk to your doctor about kelfer and whether it would be appropriate at this age.

Hi viji
My son is almost 4years. For almost 6 months his fe was hovering around 2000. We were witnessing a very slow drop to 1750ng/ml then his dose was increased to 500mg and the next month his reading was 2666ng/ml. The next month it dropped to 2000 again. The hematologist here is very cool about his fe readings, according to him this is expected in young children because even a slightest infection can elevate fe readings.
From my experience I have found that increasing the dose slowly works the best. For instance when his hema increased his dose from 400mg to 500mg I did not switch to 500 all of a sudden. For almost 6 weeks I was alternating between 400 and 500mg before I completely switched to 500mg. Perhaps that is why I have never had any problems with creatinine or LFT Alhumdulillah.
My son also has started school last week and is enjoying it thoroughly. All the very best for your little girl.

maha

Dear Andy,Lena,Maha and all my well wishers in Thalpal.com  .

Thank you for the useful tips on Asunra.Today i met Samyuktha's Haematologist.She too said she is not that worried with her SGPT or creatinine but concerned with her Fe that is almost touching 3000 ng/ml.

She asked me to stop Asunra for time being and switch to another oral chelator Desirox 500mg /day(CIPLA COMPANY).I put forward the question of using desferal for which she answered crisply that it is of no use using desferal by IV line.Our Haematologist is a leading one in a famous group of hospitals in India.She is of course good but wants her word to be the last and doesnt like suggestion from the patient side.So i could not ask about Kelfer or Ferriprox.

She in turn asked me when we plan to do HLA matching.I said we have no plans to do BMT atleast for another 2 years but gave my word that HLA match shall be carried out in a couple of months.She said whether we plan to do BMT now or later,HLA is mandatory to know if it matches.In case HLA doesnt match,She will drop the idea of a possible BMT altogether and continue with transfusion and Oral Chelators for ever.She is stern in her talks.Regarding Fe level,she wants to switch to Desirox 500mg and if there is a jump in her creatinine and SGPT levels,she will discontinue with Desirox and go for usage of Pump.

I am truly shaken,Andy.I read in our thalpal thread about splitting the dose of Asunra.will that work for samyu.As of now she is having 200mg Asunra early in the morning.I am deeply worried about Samyu.Please advice Andy and dear friends.

Thanks in advance for your valuable advice.

Regards,

Viji

Desirox and Asunra are the same drug, made by different manufacturers. Side effects can be expected to be the same. Desirox does cost less. IV desferal does work, but only for the amount of time it is used, so during transfusion only will have only a small effect. After reading the results of Zaini's trial of splitting the dose, I thought that this is something that you can try. Again, don't be alarmed by slight increases in the liver values. At levels 5 times normal, the drug is stopped, but this is unusual and your child is nowhere near this range. The creatinine must be watched, and as I said, if it gets close to 33% above normal, the drug must be stopped immediately.

Give splitting the dose a chance. I agree with the doctor that the ferritin needs to be addressed, and the side effects of the chelator have not been serious enough to warrant stopping the drug. And don't forget this extremely important tip for all Exjade users. Hydrate, hydrate, hydrate. Make sure she gets plenty of fluids daily. This is so important and often neglected.

Hi Viji
Did your hema actually say 500mg? Isn`t this a way too high ie over 40mg/kg considering samyu weighs only 12kg .Close monitoring is needed when asunra dosage is over 30mg/kg.

maha

Maha, thanks for pointing out the dosage. That dosage is the maximum that is given per kg, and is usually reserved for patients who are in serious danger from their iron load, and this is not the case here. I should point out that doctors who have used these high doses in patients say that the noted side effects were no worse than at the lower dosage. I do feel that in this situation, the dosage is not really justified, as there is no danger of a severe iron load at this stage. I would suggest cutting the current dose into two times daily and after a couple weeks, try moving to the next dosage level.

Hi Andy,

Yes,our Haematologist mentioned desirox 500Mg /day.
Any how I am continuing with Asunra but on split dosage amounting to 300mg/day.I shall check her LFT next week and then increase the dosage as per your suggestion.

I dont know if all the Haematologist in India give such dosage to their patients without analysing all aspects. Anyone from our Thalpal Family,kindly suggest a good haematologist in India with whom i can have second opinion on Samyu's treatments.

Thanks a lot Andy,Maha and everyone out there with their valuable suggestions.From today i started giving her split dosage of Asunra.Keeping my fingers crossed till next week.

Thank you Friends,

Regards,

Viji