• Welcome, Guest. Please login or register.
    July 20, 2017, 04:43:41 PM

  • Login with username, password and session length

Sajid's dove

Tell everyone they can now find this site by typing this into their browser:

thalpal.com

Click to visit us on Facebook


If you have any problems registering or signing in, please send an email to: andy@thalpal.com
Please do not send questions about thalassemia to this address.


Administrators
Andy
Danielle

Thalassemia Patients and Friends and thalpal © A. Battaglia 2017





53801 Posts in 5652 Topics by 5657 Members
Latest Member: acediane

We love you, Lisa.
May you Rest in Peace,
knowing that your legacy lives on,
right here, and through all of us.
You're forever in our hearts.
« previous next »
Pages: 1 Go Down Print
Author Topic: Jadenu, after 1 year  (Read 1001 times)
MG
New Member
*
Offline Offline

Posts: 5


« on: April 05, 2017, 08:21:42 PM »

Thal intermedia, MRI 1 year ago showed severe iron overload (more than the MRI could read, so at least an LIC of 350 mpg).  Took my Jadenu, stopped all red meat and tried to limit eating meat in general.   Just got my results back, LIC is down to 220 mpg.  I go for my follow up bloodwork next week.  I have seen a positive decline in the iron content in my bloodwork, down to about 500 from 1300s (not including a spike to 2400 a couple months after starting Jadenu).  most notably to me is getting my iron saturation level from 99% down to about 55%.

I have tolerated the Jadenu very well, really very little issues other than an upset stomach here or there.  I was hoping to have my numbers down to where I would come off of it, I am nervous of longer term effects, but so far it has been good. 

Has anyone else in their 30s been on Jadenu for an extended period of time?
Logged
Andy
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8123


Will thal rule you or will you rule thal?


« Reply #1 on: April 07, 2017, 06:51:57 PM »

Jadenu is the same med as Exjade and many patients have been on it for more than 10 years.

Is your iron load solely from iron loading from food or have you had some transfusions?
Logged

Andy

All we are saying is give thals a chance.
MG
New Member
*
Offline Offline

Posts: 5


« Reply #2 on: April 07, 2017, 07:53:40 PM »

I only had one transfusion, pre-splenectomy, 20 years ago.  My hemoglobin has held steady my whole life between 8-10.  So it has been solely from ingestion. 

My docs were never really all too concerned about my iron load, since my bloodwork always showed elevated, but not extreme iron, which slowly crept up through the years (800, 900, 1000 etc).

I hadn't been feeling great so I switched docs last year - he sent me for the Liver MRI, which came back 350+, severe iron overload, so he put me on Jadenu right away. 

Pretty interesting how high my iron went as a non-transfusional thal.  But I had no idea and my previous doctors never seemed to be too concerned about it.  I am very thankful for the doctor I have now, as well as the information available on the internet (including here!)  I have adopted a lot of the information I have learned to really try to get my iron down as low as possible and raise my hemoglobin - wheat grass, IP-6, calcium, folic acid, etc. 
Logged
Andy
Administrator
Supreme Member
*****
Offline Offline

Location: In my heart, Maldives

Gender: Male
Posts: 8123


Will thal rule you or will you rule thal?


« Reply #3 on: April 07, 2017, 11:36:09 PM »

It's not as well known as it should be, but significant iron loading in non-transfusing thal intermedias can be a huge problem that is not reflected in ferritin numbers, but will be revealed with a liver MRI.
You should consider milk thistle, too for its liver regenerative properties.
I have heard from thal majors using Jadenu who absolutely love it compared to Exjade. Even if you are on it for 2-3 years, you shouldn't see any lasting side effects.
Logged

Andy

All we are saying is give thals a chance.
MG
New Member
*
Offline Offline

Posts: 5


« Reply #4 on: April 13, 2017, 03:37:36 PM »

That is one I have started as well - Everything seems to be sending me in a positive direction.  Thanks for the info!
Logged
MG
New Member
*
Offline Offline

Posts: 5


« Reply #5 on: April 20, 2017, 01:27:36 PM »

Received my bloodwork - Ferritin is down to 582.  it is still decreasing, but at a much slower pace. ALT/AST, which were starting to get a little high before Jadenu, have dropped down to nice low numbers.  I think it is a direct positive effect of cleaning out the excess iron from my liver.

This has been my trajectory with my Ferretin:

1361 - March 2016 (Pre-Jadenu)
2120 - May 2016 (spike after a couple months on Jadenu, most likely taking iron out of my organs)
1409 - August 2016 (coming back down)
767 - November 2016
629 - January 2017
582 - April 2017

Goal is to hit 300 with Ferretin, then get rescanned with the MRI to determine LIC - so i am continuing on with the Jadenu. 
Logged
Pages: 1 Go Up Print 
« previous next »
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.21 | SMF © 2015, Simple Machines Valid XHTML 1.0! Valid CSS!