has anyone been on exjade

[skodaguy]

You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52 or 5.2 depending on your doctor.

Saw my consultant who is willing to walk closer to the edge than most but they usually are willing to offer patients a chance in an uncertain world where they don't care about statistics and negative medicine but progress.

I was offered 3 options. Ignore the iron level, take exjade now or wait to see if I become symptomatic. I was also told that as a Prof he had never seen a transfusion dpendent patient develop secondary haemosiderosis. I decided to give exjade a go for 3 reasons. Firstly it may extend my life, secondly try to lower iron levels before they become symptomatic and thirdly for the research value it will give as so few people are taking it combined with rux that it is impossible to produce a disease specific drug side effect profile.

I am taking part in the MANIFEST trial which has led to reductions in my spleen size and white count but not transfusion requirements, the holy grail. Why do I continue? It will not extend my life but the research developed may well lead to the development of a far more effective drug. I have benefited from the development of both imatinib and ruxolitinib so fell I have a duty to pay back to those patients willing and brave enough to go through trials to develop those drugs. Exjade is designed to keep dietary iron in your gut with the drug not absorbed where it can cause side effects. Do not take it with a fatty meal as this will increase absorbtion. If you read the drug profile it states 99% is bound to albumin and thus biologically inactive. Sounds reassuring until you know that is true of so many drugs and natural hormones such as thyroxine where albumin acts as a levelling agent because your pituitary gland secretes the driving hormone TSH in a pulsatile manner.

If anyone has also had experience taking exjade I would love to hear from you.

As a parting comment I still intend to go back up the Tissington trail this weekend despite that awful weather we are having right now.

[beetle]

Hi. I’m not on exjade but I’m using desferioxamine infusions to lower my ferritin. After many transfusions - and I couldn’t tolerate an Hgb level anywhere near as low as yours - my ferritin was over 11000. I had a ferriscan which did reveal iron deposits in liver and heart but fortunately relatively minor. There is some sort of problem obtaining exjade in the south west so I didn’t have much option. My ferritin now sits somewhere around 4-5k and as I have low platelets I get quite bruised from sticking needles in my stomach and sleeping with them there. I did some research on Exjade to see if it was worth fighting for but as soon as I read that it could cause internal bleeding (Been there before!)I decided to stick with the devil I know!

I share your gratitude to people, including yourself, who go into drug trials. I’m not best placed geographically to enter them myself but I keep an eye on what’s going on. I’m lucky enough to see Prof Harrison once a year and we always discuss trials but she has so far felt that there was nothing worth the sort of travelling that I would have to do to enter a trial.

All I can say is good luck with the exjade. I knew people on it when I lived in Scotland and they were tolerating it well. Let us know how you get on

Best wishes, Jan

[skipperL]

Hi - yes I am on Exjade. I was originally on Desferroxamine infusions but developed blotches in my vision and had to stop. Unfortunately the vision problems still persist.

I am now on Exjade - originally 90 mg daily, then increased to 90mg twice daily. My creatinine levels were then found to have risen. So the Exjade has been reduced back down to 90mg once a day. It all seems a bit hit and miss. My Ferritin levels are roughly around 3500 which is apparently relatively low, but they want to prevent any damage in the future, as I am transfusion dependent and have one every four to five weeks. I am also on Ruxolitinib. There was talk of going on to a trial, but since Covid all discussions seem to have been shelved.

All the best SkipperL

[skodaguy in reply to skipperL]

I need 3 units every 3 weeks with my Hb level always being in the 5's pre transfusion. I have only taken 2 doses and feel my gut has set like concrete. Not surprising in some aspects as ferrous sulphate often causes constipation and I have tolerated taking imatinib and rux in the past without problems when I thought I might be taking the worlds most expensive laxatives. Anyone tried taking Exjade on alternative dates to ameliorate the problem.

[skipperL in reply to skodaguy]

Not having any extra bowel problems with Exjade - have my usual ‘ from one extreme to the other’ regime from which I have suffered for years.