Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia

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Offline Andy Battaglia

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From the Archives of Iranian Medicine, Volume 12, Number 3, May 2009  http://www.ams.ac.ir/AIM/09123/0013.pdf

Results
Forty-nine patients (28 women and 21 men)
enrolled in the study. The mean age of the patients
was 18.38 years (range: 10 – 40 years). The mean
packed red cell transfusions in one year before
starting of HU was 22.75 units, which decreased to
6.02 after treatment (P< 0.01, t-test). The mean Hb
levels was 8.52 g/dL and 8.45 g/dL during one
year before and after HU therapy, respectively; this
difference was not significant (P=0.543, t-test).
Before initiation of HU, the patients required blood
transfusion every three to four weeks, but only
three to four months after treatment, transfusion
stopped in 12 patients, spaced out in 32 patients
(once every three to four months instead of once
every month), and continued in five patients. The
mean ferritin level during one year before the
starting of HU was 2751.44 ng/mL, but decreased
to 1594.20 ng/mL after one year of HU therapy
(P<0.001, t-test). The mean deferoxamine injection
decreased from 84.83 to 49.46 (P<0.001, t-test)
(Table 1). We had only one hematologic
complication (platelet<100,000/mm3). Thrombocytopenia
was transient, which resolved with
discretion of HU dose. Eight patients suffered from
nausea at the beginning of treatment, which
resolved spontaneously. There were no hepatic,
renal, or other complications during the treatment.

Discussion
The mainstay of treatment in major β-
thalassemia still relies on regular blood
transfusions and the use of iron chelators.
Pharmacologic reactivation of γ-globin genes holds
great promise for the treatment of thalassemia
syndromes as well as of sickle cell disease.
Hydroxyurea has been demonstrated to up regulate
γ-chain synthesis and HbF production. This drug
has been used successfully in the treatment of
sickle cell anemia by increasing HbF levels and
reducing clinical complications,8 although there is
limited experience with this agent in betathalassemic
patients.9,10
We described the results of the treatment of 49
splenectomized, transfusion-dependent major betathalassemic
patients with HU. The effects on total
Hb, transfusion requirements, and the level of
ferritin were the most significant observation of
this study.
We observed a significant decrease in blood
transfusion. The response to HU was equal in
males and females. Decrease of transfusion
requirement began in the first three to four months
of HU therapy. Our findings show that the effects
of HU therapy can occur after a short period of
time.

The significant decrease of serum ferritin in the
responder group is clinically very important as iron
overload is the main hazard to these patients. The
serum ferritin decrement is due to decrease of
blood transfusion and to a lesser extent due to
increased iron utilization by increased Hb
production and also suppression of ineffective
erythropoiesis.

HU treatment was well-tolerated and it did not
cause any hematologic toxicity except in one
patient who developed transient thrombocytopenia
which resolved after a short period of HU
cessation.
Although the carcinogenic effect of long-term
use of HU remains a matter of serious concern, we
did not encounter any malignancies including
leukemia in the five-year follow-up. This study
shows that HU can be an effective and safe
treatment for major thalassemia in long-term
therapy.


This corroborates the report from several years ago from Algeria that showed positive results using hydroxyurea in thal majors. This was a bigger study and the positive results suggest that hydroxyurea therapy should be considered one of the tools in decreasing transfusion frequency in thalassemia major. The lack of serious side effects is also quite encouraging.


The report is attached to this post as a pdf file.
Andy

All we are saying is give thals a chance.

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Offline Manal

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #1 on: August 25, 2009, 05:25:19 AM »
Thank you Andy so much for the wonderful post

I just want to add two more points concerning the Iranian studies.

In Syria conference, another Iranian study was also discussed in one of the lectures but that one measured the carcinogenic effect of the hydroxyurea on patients after 10 years fo usage and also found it to be safe except for one patient that got leukimia but it was not proved to be directly related to the treatment (there are many other variables and further studies were recommended)

According to the study, it was found that the most effective and safe dose is between 10 to 20mg per kilo

Half the patients enrolled in the study were transfusion independant after the usage of HU, but Professor Cappilini (Italy) commented that from her expierence this has to do with the nature of the Iranian mutation in this certain population. From her expierence, less results were achieved in other populations.


I will post this study too if i find it online

manal


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Offline Andy Battaglia

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #2 on: August 25, 2009, 05:40:51 AM »
Keep in mind that the Algerian study was also done with majors and was successful. I think there is much potential for hydroxyurea and other fetal hemoglobin inducing drugs, to reduce the transfusion needs of majors, which in turn will reduce the amount of transfusion related problems, including the amount of iron taken in. As positive as this report is, I do expect much more from Dr Perrine's work with short chain fatty acid drugs, which should prove to be even safer over long term in addition to having a more dramatic effect on hemoglobin levels. Eventually, this will cause great changes in the approach to treatment of thalassemia.
Andy

All we are saying is give thals a chance.

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Offline cherieann

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #3 on: August 25, 2009, 06:37:57 AM »
Thanks for the post Andy.
Its nice to know that my dr is doing a great job. hehehe
I have been on Hydroxyurea for over 8+ years.
Most time my hb is @ 99 after 6 weeks so thats pretty good. :biggrin
Thalassaemia is a lifestyle not a burden.

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Offline Zaini

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #4 on: August 25, 2009, 02:44:12 PM »
8 years is a pretty long time,just curious,you never had any side effects?
^*^Xaini^*^

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Offline Sharmin

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #5 on: August 25, 2009, 03:41:32 PM »
Thanks for posting this Andy,
I hope that patients continue to have good results with fetal hg inducers.  I cannot wait to hear Dr. Perrine talk about her work in NY.  As the clinical trials started in April/09 I wonder if some preliminary results may be available by October.

Zaini,  I have high hopes that a hg inducer will work very well for lil Z - especially hemaquest. 

Cherieann, I am glad to see that it is working well for you:)

Sharmin
Sharmin

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Offline Zaini

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #6 on: August 25, 2009, 06:34:28 PM »
Sharmin,

Thanks a lot,i have a few concerns regarding Hydrea,and naturally i am scared of trying something new which might effect Lil Z's growth,so we'll wait for a better form of hb inducer,i am not saying Hydrea isn't good,its working really well for Cherianne,6 weeks of interval at her age is awesome :) .

Zaini.
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Offline cherieann

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #7 on: August 26, 2009, 01:24:41 AM »
Thanks Zaini. Yes it is doing well for me.
I haven't noticed any side effects and my haematologist keeps a close eye on my levels.
Maybe thats why I'm doing well, they are monitoring well? :hugfriend
Thalassaemia is a lifestyle not a burden.

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Offline nice friend

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #8 on: August 26, 2009, 12:08:51 PM »
Hi All ,
it will b good for me to try this or i should have to avoid trying any drug like this ??? wat do you say ?? i wana try this and a few times talked abt it to my doc as well , but she wn't to try any drug ( i m using try to bcoze she said that its not proven yet on thal majors ad I wouldn't like to experiment it on you )....  i have forward this study (mentioned above ) to my doc and wil ask her again that if it is safe then i m ready to try ,( i dont know why i m always stay ready to try for anything that seems to b beneficial HAHAHA) .... wat u people think ?? is it safe ?/?? and does it looks safe in my case ???

Regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline cherieann

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #9 on: August 28, 2009, 06:24:53 AM »
Life is always filled with risks even after it has been proven because no individual is exactly the same. We all react differently. You need to make the decision for yourself.
I recommend your Drs advice for being careful but at the end of the day, your Dr gets to take a break from dealing with Thal where as you will never be able to walk away.
My advice... go with your instinct.
For me, I take my Drs advice or warnings as she explains things but I have the overall choice of whether to trial or not. In NZ I have no one to compare to so I am my own guinea pig.
Now that I have you all, I have more people to get info from before I make choices. hehe
The plus is also I talk aboutwhat you guys are taking and together we choose whether I should trial it as well.
Umair... follow your instinct.
Thalassaemia is a lifestyle not a burden.

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Offline nice friend

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #10 on: August 30, 2009, 07:38:33 PM »
Cheriean ,
yeah i know that final decisin will be mine , as it was in interferon's case ...  i want to try everything that is available here and sound promising .. i m a lil tired of going for Tx every 10-12 day .. and i dont like to go there that's why i m late to my scheduled  Tx date .... i dont know why i dont like to go there , admin of my tal center has told me that when-ever i want i can go there fr Tx and they will arrange blood for me when-ever i will b ther for blood .. and he has said me to dont worry abt shortage just plan ur Tx day and u will get blood at that day  but i still dont like to go there ... that's the reason why i want to try this ...

i think , i should ask my doctor again abt it .. hope to hear sumthing positive. i think my doc will allow me to go for this ..

Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline cherieann

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #11 on: August 31, 2009, 05:49:41 AM »
Umair,
There is nothing wrong with feeling that you dont want to go for a transfusion, as long as you still keep the transfusions up. We all need you with us.
I do understand though because I am exactly the same. As much as I love my hospital family, I hate going in. I have always felt that its one day stuck in a place when I want to be else where. One day of my life that I will never get back. But I also remember that I have to give up that one day or else...... :dunno Don't want the alternative. I guess that is why I go all out trying to extend the transfusion times and communicate with my specialist. I refuse to discuss with the junior drs now because they mess things up.
I control my destiny :biggrin
Chin up my mate, you will find your silver lining in life. :hugfriend
Thalassaemia is a lifestyle not a burden.

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Offline Zaini

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #12 on: August 31, 2009, 05:57:08 AM »
Cherianne,

I really love your positive attitude and your encouragement for everyone :hugfriend.

Umair,

Now that your ferritin is quite low your body must be a bit relieved,so you can ask your doctor if she allows you a little dose of Hydrea after doing all the necessary tests,and then keep monitoring all the blood levels.

Zaini.
^*^Xaini^*^

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Offline cherieann

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #13 on: August 31, 2009, 06:02:26 AM »
Thanks Zaini,
I  learnt from the best. :wink
Thalassaemia is a lifestyle not a burden.

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Offline Lena

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Re: Hydroxyurea Therapy in 49 Patients with Major Beta-Thalassemia
« Reply #14 on: August 31, 2009, 06:11:52 AM »


I don't know guys. Cherieann's case is one of the few cases I have heard of, concerning hydro's success. Here it has been tested but the results were not so encouraging.

Lena.

 

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