Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: djema on February 09, 2017, 04:05:26 PM
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Hello friends and Andy .
In Russia, we offer the cure Jakavi.
What would You advise ? Many thalassemia patients are taking this medication ?
In Russia box Jakavi is red and firm Novartis produces Jakavi in blue color???????? :-\
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Jakavi is a JAK2 inhibitor that is available for some other conditions in the US, but phase 3 trials for use in thalassemia has just recently concluded. The drug reduces spleen size and a slight increase in pre-transfusion Hb was also noted during trials. The hopes are that this drug will be an alternative to splenectomy. This may be especially helpful to the many patients who experience regular periods of hemolysis, requiring more frequent transfusions.
Do you know people using the drug and what their results have been?
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Andy, Is JAK2 only available in US or in some other countries also. can it be availed easily from Markets in US. thanks
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I know very little about this drug. It is approved for other conditions, but the report on the trials for thal was just submitted in December, 2016. I would like to know more about how it is being used and what the results have been, but I am still waiting for a reply from djema.
This is the link to the trial report. http://www.bloodjournal.org/content/128/22/852?sso-checked=true
What seems most important is that for the spleen size to shrink, ineffective erythropoiesis in the bone marrow would have to also be reduced. This is one of the two goals of transfusion, so that would have dramatic effects on the health of the patient taking this drug.
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:rolleyesFriends ,I apologize for the late response .
I will try to gather more information about Jakavi , my friends from Dagestan not long ago started to take this drug .
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Andy I sent You a private message , thought I wrote on the forum everyone. :rolleyes
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Hello, friends . my friends from Dagestan told me about Gakavi, they took Gakavi for six months, the children started to gain kilos, the need for transfusion became less. before transfusion was every week, now once a month. Gakavi expensive for the price, it began to give children who are preparing for a bone marrow transplant. all the Djakavis are not given. we'll also get Gakavi for Aysel, write how my daughter will feel when she drinks Giacavi.
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Hello, friends .
my daughter Aysel accepts jakavi ( ruxolitinib) medical treatment for a month, after jakavi she constantly wants to eat, a good appetite.
the face looks almost like a healthy child. Blood is also needed every month, and when it's sick for 2-3 weeks.
Six months after receiving jakavi, there will be bone marrow transplantation. :dunno
Let you all be well!
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Good to learn this. Ruxolitinib is currently in trials and has shown great value in reducing spleen size and improving pre-transfusion Hb level.
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Hello, friends.
Jakavi really reduced the size of my daughter's spleen , hemoglobin no longer drops to low numbers as before . Hemoglobin is better . My daughter on the spine were the centers of blood from the treatment of Jakavi tumor is not gone . we did 10 sessions of radiotherapy to go these centers and we continue to make Jakavi. The transplant will not be done until we have the foci of hematopoiesis .
It's okay !
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That's great to hear. I hope we see this soon available around the world.
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That's great to hear. I hope we see this soon available around the world.
:ty
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how about people who already got splenectomy ? will the drug help improving the Hb
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eng.Aaron,
The main action of the drug has been to reduce spleen size. It has had no positive effect on Hb level in trials, and as a result, no phase 3 trial is currently planned for thalassemia.
Previous trials have excluded splenectomized patients and I doubt it would have helped them had they been included.