Need complete suggestion for my condition

Urgent !!!

hi not to alarm you or anything but !! you MUST get your Fb lower !!!

my fb was 4000 once , in 2004 ...
and well.... this is just what happened to me , and in no way might this happen to you , as i do not know your health history ...
but i had a massive heart attack and then my heart completly failed ,was in a coma for 4 months or so

please ...

Get your ferritin Down now
either 24/7 desferal iv , musculocutaneous and exjade ( high dose ) i was on 10 tablets a day..


are you having any difficulty breathing ? pain in back / shoulders / jaw/ chest ?

regards Lillie

Hi Jlyarta,

As Lena and Manal said,IV desferal is a good idea,if you can not take it though pump round the clock,and please take 250 mg of vitamin C after half an hour of starting desferal,then check the difference in urine color.

Zaini.

Hi,

If possible use combi therapy of desferal and ferrirprox. We'll be here to support you! I advice you to have a look around the forum - if you have time - they are great topics about chelation, diet and vitamines!


I always feel ashamed about the prices of our medicines. I started to use ferrirprox in 1994? My pharmacy bought the stuff at a kind of lumberyard (for compagnies) at that time. Can you believe it? We had 100 pills from the price of 2 nowadays. Scandalous!

thank you everyone, that's very encouraging, I'll keep updating the result later on.

i've not found vit c 250mg yet, there is ester-c in 320mg, can i take that?

and i've tried 12h, as what i said before, the urine is not as red as usuall.. and i wonder is it any diffrence if i using the desferal in night instead in day activities?

wich one is better?

thank you.

Andy : I've found the association, here it is :

Location

RSUPN Dr Cipto Mangunkusumo

Jl. Diponegoro No.71 Jakarta Pusat
Jakarta Pusat
DKI Jakarta

Tel  : 391 8301-11
Fax : 3134 8991

i've not found vit c 250mg yet, there is ester-c in 320mg, can i take that?

well as much as i kow its (vit-C320mg) too high for a thal .... try to find 100mg- 250mg pills , if these volumes ar not available as i also didn't find these volumes soo theen you may try my one method ( i used to break 500mg Vit-c in four pieces and then i use to take 1 piece of those four pieces daily and when chelation is on with desferal then i use to take two piece in 24 hour with the gap of 12 hours between them ... )
i hope i m doing right ! ... 

Best Regards
Take Care
Umair

hello Jlayarta,
just wanted to know how your fb level is now ?

Lenas post i totally agree with , your sticked regime sounds good.

when i was very sick i was put on desferral 10 vials highly concentrated with one 10ml syringe over 24 hours ( all day /all night ) for 5 days and two days rest , it seemed to work.
however i got extremely bad and very painful heamatomers and edemas and concerquently had to go on cortisone injections for many months ( which is very bad ) till finally i couldnt take it anymore and kinda started to get slack on my stricked regime and concerquently my Fb level sky rocketed (went up) through the roof ( to very dangerous levels ) 4000 +


hope your arms, legs, stomach aren't to sore !

how is your MRI , CT SCAN etc of all your internal organs ?

take care
lillie 

Hi guys,
I'm cant check my feritin at the moment, they dont have the chem for that...

Thank you so much for your concern about me...

I already tried to consume Ferriprox 500mg, at the leaflet said i have to take 25-30mg/kg so i took 2 tablet 3 times daily (morning, noon, night). and it makes all 3.000mg right? and i'm wondering if that's enough or too much? I still have desferal injection at night thou.. and I also dont know is my urine superb red is good news or bad news... coz it feels not right to see my urine so red so closely to blood color even when first one in the morning was like blackish thing.. kinda scared me off sometimes..

And I also have some doubts about my Blood Test 1 week after i consumed ferriprox, Everything was fine.. I only Highlighting 3 things.. Hemoglobin, thrombocyte, and WBC.. (not familiar with thrombocyte writing in english, hope you guys understand wich one i ment..)

Hemoglobin is dropping a bit faster than it should be, before it was 1 point a week (it is a must.. never faster before except if i take medication of anti biotic), and now it seems a lot faster as you can see 6 days before the last result (before i consumed ferriprox) my HB was 11.7, and 6 days after was 9.9

THe surprise happy thing was the WBC, it is not effected at all, before was 5.7, and the latest even increase the count to 5.8.

and the last of my confusion was Thrombocyte it was 190 something before, and now 164.. and it kinda worry me a bit now... I dont know if ferriprox have something to do with my latest result... can i have some clue? anyone here know anything about that?


Thank you..

The iron does colour your urine like coke. That is a very good sign.
Why cant they check your fe? So far as I know is ferroprox only bad for your white blood cells. Though I have experience a delay in my transfusions when i stopped (abruptly) with desferal and ferrirpox).

Red urine is an indication of iron being excreted.  Our doctor however has warned that if the urine has too much of a brown color to it - it may be sign of hemolysis as well - in that case you wish to let your doctor know. 

Sharmin

hmm, i think i'm more worried about my thrombocyte than my urine, and the bad thing is i'm dont have any personal doctor for thal in my city.. the only one i knew with thal knowledge is in Singapore..

Hi Jlayarta,

The recommended dose for Ferriprox is 75 mg/kg daily. What is your weight?

Drops in thrombocytes (platelets) are not associated with Ferriprox. I do not think one test is significant when it comes to platelets because truth be told, many platelet readings are wrong in thals, because lab techs have trouble distinguishing misshapen red blood cells from platelets, so the readings can be wrong in either direction. Platelet levels also vary greatly normally, so as long as the level is in the normal range, it shouldn't be of concern. If it has dropped, it is far more likely that it is related to hemolysis in the spleen that is destroying platelets along with red blood cells. Often this is related to antibody reactions from the transfused blood. If your Hb continues to drop faster than normal, antibody reactions should be investigated using the Coombs test.

Hi buddies ,
the link i m gonna mention below , i hope that it will help you people abt how to take ferriprox to take it most  advantage .. please check this link ....
http://www.thalassemiapatientsandfriends.com/index.php?topic=1868.0;highlight=ferriprox

Best Regards
Take Care
Umair

This is shocking result for me...

here it is :

as i write above, 1 week before i drink ferriprox my ferritin was 12.000, and one week after medication with ferriprox and desferal injection (desferal = 2.000 mg /day /10-12h) and for ferriprox i try at first week combination 6 tab a day. (3000 mg)

So it would make 5.000 mg / day, and the result came out surprising me, my ferritin was above 15.000 (the lab dont put the "actual" number, but it's said >15.000).

As for my Regular Blood Test come out really nice, my wbc good and my plt also good. everything went smooth and great.

As for today means 6 weeks after consumed ferriprox (2 pack already finished) i check my ferritin and it comes out surprise me again... it is 26.000 now..

So what did i do wrong? I'm taking the medecine in safe dossage so should i go for more? or Ferriprox doesnt work for me? but my urine is as red as before.. And a long time ago, i only use 4 vials of desferal and never get to this level (26.000).

Thank you..

Jlayarta,

I am curious...how does your doctor justify the sf rising to 26000?
Of course there is a chance that your organs have released iron,that is why the sf has risen.And if this happens,it is a good sign because ferriprox helps iron to be removed from your body- it works for you. Which is your weight,indeed?

Lena.

i'm 66kg now..

my doctors havent contact me yet.. he's in singapore and i'm indonesian, and i have no local doctor now.. (still search for one).