hellooooozzzzz

hi to all thalpals

im angela ali, 23yr old from agra, the city of taj mahal (india)....im beta thal intermedia...gone thru splenactomy at the age of 13...which helped me a gr8 deal...im doing fine now and receive blood transfusions in 2-3 months time or if i get infections n hb drops to less than 6.5 then transfusion is a necessisity. i guess the infections tht i catch is due to the low immunity system bcoz of splenactomy....recently my ferritin tests show 1350...got my dna analysis done as well n i have Haemoglobin E with mutation...n haomotologist has suggested me to take HYDRA...if anyone takes this medicine pls do let me know if it works for u.....i have no clue whether it wud help to maintain my hb...but the doc said it might help raise my hb to 1 unit....i have to wait for 3 months n see the results......

other than thal history........im an artist love to paint n listen to music....i've completed my bachelors in fine arts...
n now i do freelancing...n exhibit my work as well:)

really happy to have found this site whr i can meet thals n share thoughts n queries with them....

luv n regards
angela   

Hi there!

to the group.

Nice to know a bit about you.

There are a couple of members taking HydroxyUrea (a.k.a HU and Hydra) here on this site. It's a fetal Hb (HbF) inducer which might help you go longer without or totally eliminate transfusion for you.

I hope HU users will respond to all the questions that you have in mind and I'm sure you will get a lot of valuable information about it from our resident hero and expert Mr. Andy

 
    WELCOME 
      TO THE SITE ANJELLA ..
i hope you will find this site realy helpful
& you will find Answers of all your questions
here on this site .. soo .. dont hesitate to
ask anything ,that you want to know about.
 .....
Best Regards
Take Care

hi sajid n nice friend

 sajid....thanx a lot for informing me abt hydroxyUrea....as im a new user of this medicine...i really hope it does have an effect on me if it helps raising hb....n ya i've read andy's posts as well....he's seems to have very wide knowledge on thal

nice friend....thanx for the welcome...im sure i'll b comfortable to discussions n learn more abt thals here on thalpals

Welcome Angela,

We are happy to have you as a member!  We hope you find a lot of good information and great friendships here:)

 

Sharmin 

Angela hi,
welcome to thalpal.do share your experiences with hydroxyurae.all the best.

hello sharmin n sah,
           
           thanx for the warm welcome   im sure i'll get a lot of information here...n ofcourse gr8 frndships tooooo

n yes sah....i'll definately keep all of u updated wid my experience of HydroxyUrea

take carezzzz
luv n regards
angela

Hi Anjjela

Sorry I missed your post. I think I am spokes person for Hydro oxy urea(Hydrea) for this forum. it is good tht your Dr has suggested it. If you read my previous post you wil know tht my son has been using it since he  was 2.5 and now he is 8.5 . So basically 6 years, the dosage has been increased with age. his growth touch wood so far has been normal. No side effects for this drug till now. God has been kind.

For my son, splelenctomy was carried out on july 22. So for almost a month hydrea was stopped.   We have started it almost a month back.

I can just tell you think positive and try it out. If it suits you well and good, if it doesnt well we have the good old transfusions.  Also you are in India, it is easy for you to get fresh wheat grass juice. Please drink it twice a day, it is very good. Immunity will also increase.

Lastly just be positive and happy. Everything will be great.

God bless

hello Anjella ,
check this link , i think it is usefull for you ....

http://www.thalassemiapatientsandfriends.com/index.php?topic=1207.0

Hi nice friend n poo gill....n all thal pals

nice friend:thnx for the link on hydroxyurea 
 
poo gill: You missed my post n i missed to reply...hehe
well i didn't have a net connection for long so cudn't keep myself updated wid thal pal..but now im back
thanx a lot for informing abt hydroxyurea...n happy to know its helping ur son
well i will be on the lookout for wheat grass here in india....im not sure where will i get it.

now tht 3 months of taking hydra r complete i got my blood tests done

though i had a transfusion before starting hydra....(My Hb was 6.5 n wid transfusion it must have raised to one more unit)...n now  my Hb is 6.9
Ferritin 1390.0 ng/ml

i have mailed my blood reports to d Dr. who has now advised me to have 2 capsules of Hydra daily....n get my blood tests done again in 2 weeks...
He said i have to keep a check on WBC count n neutrophils n if there is a decline in these then i have to hold it.......

im a little worried abt Ferritin levels.....any suggestions?

luv n regards
angela

Hi Anjjela

Good luck in usig the hydrea, it is given up to one year to determine if is effective or not so patience is important. As for ferritin. it is not so high but using a combination therapy is the best in having a quick and effective chelation

manal

Hi Anjjela ,
GOOD LUCK for Hydroxyurea experience ... ....
wat Manal Said i totaly agree to her , that ,your ferritin is not tooooo much high but its high , A little bit ....
and as she said Combination therapy is the best and effective more than any other treatment , as i have experience of it .... Wishl You All the best of luck for the treatments you are getting ...

Take CAre
Best Regards
Umair

Hi nice friend and manal

thanx for informing about ferritin...

Well its been more than 2 weeks now after my blood reports on 1st of Jan.....which tells that my ferritin level is now 1553...surprised to see it rise from 1390 to 1553 in 2 weeks...
i was taking Hydra 2 tablets a day and im not sure if the increment in the dose of hydra has shown such increase in ferritin... my hb has lowered to 6.5

Now when i consulted the Dr....He asked me to go for a BT if i am short of breath or feel dizzy....
He also reduced Hydra intake to 2 tablets on monday-wednesday-fridays and 1 tablets on all other days....plus he prescribed me a new medicine called Asunra..30mg/kg/day....its an iron chelating agent...n after a lot of search i got it today finally couriered to me from another city by a chemist....so today was day 1 for me to have this medicine..

I think mayb Hydra is not suiting me or on the other hand as everyone says...i shud be more patient

luv n regards
angela

Anjella ,
as you mentioned that your ferritin rose up from 1390 to 1553 in two week  ,
1390 is this test was done before BT ?? if yes thenits nothing serious bcoze every pint (blood bag ) of 250ml contain's 250mg iron , so this could be a reason behin this hike of iron in 2 weeks ( as you sai two weeks but i would like to say it rose with the BT ) ...
Asunra :
as you mentioned, yeah its an oral iron chelator by novartis , in replacement of desferal .
its a well known chelator ... WISH YOU ALL THEBEST OF LUCK WITH IT ...hope you will get the most of its benefits and your ferritin will come in normal ranges very soon ....

Best Regards
take care
Umair

Hydroxyurea (hydra) takes well over a year to show maximum results.

Exjade, Asunra, Desirox and Osveral are all the same drug, Deferasirox. It does take some time to see ferritin drop with Exjade, so be patient and don't use anything metal to mix it in or with.