Progress reports on Exjade please

[helenr]

Hello everyone

We were would like some progress reports from those of you who have been using Exjade for a few months now. How soon did it start working and are the side effects tolerable?

It has finally become available in Australia. David has been coping with desferal quite well until a recent nasty infection which required surgicasl treatment and iv antibiotics. The oral treatment is looking attractive. We do not know the price yet and are still waiting for our Revlimid trial.

We hope you all find something to make you happy today. I remember the person who gave the advice to treat yourself everyday even if it is a surprise icecream.

Good luck, Helen

[covergirl]

Hi Helen,
I started taking Exjade in February and around April my HEMO/ONC noted my white cells decreasing. I had a previous cycle of decreasing whites but they would then rebound and come back up again. My ONC noted that since Exjade, they did not cycle back. So she took me off in late April and immediately did a BMB. BMB showed no change, however, I’m now on desferal treatments with my every 5week BTX.

I will note that while on Exjade, my ferritin levels were slowly coming down. I had no other side effects, other than being very Regular. I was fortunate that my insurance paid for it. It was $5,000 for 30-day supply. I paid $50 co-pay.

Best o luck to you and your husband. As with MDS, its different in all of us.

[frank]

hi helen,

i started Exjade after April, no side effect, i only have 1 ferritin levels test last month, it seems going down according my HEMO doctor. i am still on it.

Frank

[patti]

Hi Helen,

My MIL will be starting on exjade in a few weeks. We’ve already gotten approval and are waiting for dispensing. For my MIL we have opted to use the lowest dose possible (250mg) and use Chinese medicine also for the chelation. If the 250 isn’t enough with the CM we will up her to 500mg after 60 days. This should give her body time to adjust to the exjade with hopefully minimal side effects. We will be watching for falling white cells as my MIL doesn’t have a lot of white cells to lose. That’s the other reason for starting at such a low dose. But we would recommend that for any drug.

Patti

[helenr]

Thanks for your replies. Unfortunately the cost will probably help David decide to stay with the desferal. We are conserving all funds to use on Revlimid when it becomes available here.

Thanks again

Helen

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