Has any adults here used Jadenu? How did it work with you?

Has any adults here used Jadenu? How did it work with you? Just curious and looking for more information.

My husband is 32 years old, we live in the Philadelphia area and will be put on Jadenu soon because his iron level is at a 19. He does not do transfusions and is just on pencillin and had been for almost 12-13 years. They just scanned his liver and his iron content is high. My husband is sad that he has to take this medication. He has a physical job so I'm worried the side effects will take a toll on him.

Any help appreciated.

I don't know what you mean by iron level at 19.  I go by ferritin level, which is usually a 3 or 4 digit number.  I just got Jadenu myself, will start tomorrow.  I am also similar age as your husband.  I'll let you know how it goes.  I've been started on what is considered a low dose of two pills of 360 mg each.  Taken once a day.  If all goes well then the dose will be increased. 

I also take ferriprox.  I'm kind of curious how they will act with each other. 

Hello,

I am a 30 year old with Thal Intermedia.  Always seemed to have the lighter side of symptoms, although my hemoglobin usually hovers between 8 - 10. 

My ferretin levels were always high, and slowly crept up as i aged, but doctors did not seem too concerned since i have never required transfusions. 

I noticed over the past few years a little more fatigue over time and some pains in my stomach.  the docs treated it as gallstones (which i have) but when i finally found a new hematologist, he had me go do an MRI scan for liver iron concentrations.  Lo and behold, my liver iron concentration was higher than the machine could even measure. 

I have been on Jadenu for about 6 weeks now, just had my follow up, and my ferreting level was at 2100 (up from 1300 just 3 months ago!) 

It seems pretty clear that the Jadenu is cleaning out my organs, with the dramatic spike in ferretin.  The doc just upped my dosage to the maximum for Jadenu, so we will see how it goes from here.

I have noticed feeling some fogginess and a lot of fatigue, but i believe it to be due to the extra ferritin floating around in my blood stream.  But I do not believe the actual medication has caused any issues.  all of my bloodwork has checked out, no spikes in AST or ALT so liver, kidney, and other functions seem good to go.

Good luck with it, hopefully this medication is the lifesaver the docs tell me it is.