Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Bostonian_04 on April 28, 2015, 06:24:01 PM
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We received the new Exjade once a day pill, called Jadenu....and it is life changing if your child can swallow a small pill. It is smaller in size than the multivit we take and no aftertaste....
However, we did have a higher co-pay than Exjade. So, we applied for co-pay assistance with the drug company and were accepted. In US, if you are not able to buy Jadenu (or Exjade) for higher co-pay , you can get the co-pay assistance from the drug company. There is no income limit but does have some restrictions on what kind of insurance you have...But still worth a try calling them up.
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Jadenu is exactly what everyone has been asking for in a chelator. A truly once a day, easy to take, get back on with your life, pill.
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What is the price tag Bostonion_04 before going to insurance?
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Is it available in INDIA?
Regards,
Ashutosh T
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No it is not available in India. It will take years. EU will get it sooner.
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According to Novartis, 1-2 years for Germany.
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Jay,
we had a $1000 co-pay for 3 months supply. not sure what the amount is if we had no insurance.
The pill is really helping. The only side effect so far is itching but there is no rash. From the day my daughter started the pill, she is complaining of itching...the weather is changing too so not sure it is truly Jadenu or the dry skin.
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All it will take for India to get it is for Cipla to copy it.
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Bostonian,
I am glad to here that you have the pill. I will ask for information to get my son on it.
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Is Jadenu a better chelator than Exjade? In what respect?
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Jadenu is Exjade, but in the from of time-release pills that can be swallowed.
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That's a great news, Good Luck with new medicine.
I hope this works better with Liver function and get available in the UK sooner.
Best Regards,
Atin
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Any news about availability of Jadenu in India
Regards,
Ashutosh T
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Any news about availability of Jadenu in India
Regards,
Ashutosh T
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Bostanian ,
Can you update us how the new iron chelation tablet Jadenu is working for your kid. Do you see positive improvements as compared to Exjade. Did you also get a Ferritin test done after moving onto Jadenu and do you see the results being better.
Anyone having any experience on Jadenu can you please share with the group as well.
Regards ,
Yogesh
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My daughter's Doctor at CHOP just switched her over to Jadenu from Exjade. They stated that Jadenu can now be crushed and put in food if it cant be swallowed. Will let you guys know how it goes...
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Thanks for the update JV.
Jadenu is a time release pill, crushing will make it easier for children to take.
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For our daughter Jadenu is working similar to Exjade....we try to keep her ferritin between 400 & 600 and after moving to Jadenu, Ferritin target remains the same. More than Ferritin, we saw stomach issues after switching to Jadenu....which is harder to deal with on a day to day basis. so our focus have been more on controlling the stomach issues than ferritin itself.
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Interesting observation Bostonian.
Just wondering, how long have you been giving Jadenu to your daughter. I know lot of patients had stomach issues when they first started exjade, but either they subsuded with time or splitting the dose worked for them. We don't hear complaints of stomach problems from our members anymore.
I don't know if Jademu can be split or can it be....
Not sure if stomach problem will subsides after time as body adjust to it.
Please keep us update.
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As I mentioned, I took part at the advisory board of Novartis. Jadenu can be taken along with a light meal (400)calories. Like a small salad or a turkey sandwich.
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bostonian,
Thank you for sharing. I am surprised to hear that as I had heard that Jadenu actually eliminates or reduces gastrointestinal issues. I hope the issues resolve soon for your little one.
Sharmin
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Bostonian, I'm sorry to hear about the stomach issues, I, like the others thought that Jadenu was supposed to help with stomach issues caused by Exjade...at least that is what Dr. Neufeld has stated.
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Thanks for all your comments and concerns. Canadian_Family, we have been using Jadenu from April onwards but the stomach issue got worse during the fall break. But now we think the stomach issue is in control after we started giving Jadenu right after the evening meal. Earlier, exjade was taken right before going to bed and there was a gap between dinner and exjade. We think, with jadenu, the gap between dinner and medicine caused the stomach issue. splitting the jadenu dose didnot help but taking Jadenu right after meal is helping for now.
Our daughter's Hema also mentioned increased stomach issue he has "heard" about. Based on our recent experience, and Nomad's suggestion of taking Jadenu with light meal I think taking jadenu with meal will help anyone seeing stomach issue.
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Thanks for the update Bostonian.
I see similarities between exjade and Jadenu in terms of stomach issues and resolution.
The question now is "will Jadenu prove itself to be more effective than exjade". I guess time will tell.
To my knowledge, Jadenu is not available in Canada yet. I guess it is only matter of time before it is prescribed for the patients.
Sharmin,
Do you have any update......
Last Note: If my memory serves right, long time ago (may be 10+ years) I recall one of Andy's post where he wished for an iron chelation drug that can be swallowed with water once a day and the patient can be on its way to work or studies.
Dreams do come true......
How about we dream, once a day pill which eradicate the blood transfusion in thal majors.....
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Last Note: If my memory serves right, long time ago (may be 10+ years) I recall one of Andy's post where he wished for an iron chelation drug that can be swallowed with water once a day and the patient can be on its way to work or studies.
Dreams do come true...... :love
How about we dream, once a day pill which eradicate the blood transfusion in thal majors..... :mom
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Thanks Bostanian & everyone for sharing their experience. Bostonian hope so your daughter is able to adjust quickly to the medicine.
From what I can gather it seems there have been little advantage of taking Jadenu over Exjade as of today since the hematologist also sees more cases with stomach issues. Maybe with some more time the body would get adjusted to the medicine and things would be much better. Bostanian please do keep as posted as you really have been trying many combinations and your insight would definitely help all.
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Gather from the link below.
http://preview.thenewsmarket.com/Previews/NVS/DocumentAssets/373081_v2.pdf
How is Jadenu different from Exjade?
Jadenu is a once-daily oral tablet that can be swallowed whole, with water or other liquid,
and does not require dispersion in liquid like Exjade, offering a single-step treatment
option. This means it can be taken without time-consuming preparation. Jadenu can also
be taken with or without a light meal, while Exjade must be taken on an empty stomach.
The dosage strengths of Exjade and Jadenu also differ. Jadenu is available by
prescription in three strengths: 90 mg, 180 mg and 360 mg, while Exjade comes in 125mg,
250 mg, and 500 mg dosage strengths. Because of the degree of absorption, the
dose is lower than Exjade to achieve comparable levels of the drug in the body. For
example, the 500 mg dose of Exjade is equivalent to the 360 mg dose of Jadenu.
I am wondering, there is no mention of time release pill advantage......
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Canadian Family,
In Oakland they told me that the greatest advantage of Jadenu is that it has fewer fillers, therefore a smaller dose is more effective. This reduces risk of side effects to liver, kidney, eyes, ears, bone etc. Over time chelation of iron should be more effective too.
We have put in a request in Canada - and we have been pushing for its approval in Canada. The latest word we received is that they may grant this request in February. Once our request is approved - everyone in Canada should be able to access it.
Hoping for the best,
Sharmin
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Thanks for the update.
I hope this is not going to be another fight with insurance companies (like in the case of exjade).
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Sharmin, thank you for sharing that info on Jadenu
James
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Amen to your dream (and all of ours too) Canadian Family :)
May be Luspatarcept is goign to fulfill thsi dream.....
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Thanks Bostonian.
Talking about Luspatarcept, FDA has granted fast track status to it. Encouraging news from December 7, 2015. Please see link below.
http://finance.yahoo.com/news/fda-fast-track-designation-granted-120000980.html
On even a brighter note, Celgene and Acceleron Announce New Results from an Investigational Study with Luspatercept in Beta-Thalassemia Presented at the 57th American Society of Hematology (ASH) Annual Meeting and Exposition. They have encouraging results.....see link below.
http://www.cbs8.com/story/30688216/celgene-and-acceleron-announce-new-results-from-an-investigational-study-with-luspatercept-in-beta-thalassemia-presented-at-the-57th-american-society
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Thank you for sharing Canadian Family. This is great news. In itself luspatercept is an amazing medication for thalassemia. I wonder if it would in the future aid beta zero patients - after gene therapy to maintain high enough hemoglobins without transfusions. There is a lot of potential. In the meantime I look forward to it improving the health of all thals.
Sharmin
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Thank you Canadian_family for sharing the encouraging results of Lusptercept.
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Thanks Canadian Family for the great news.