Bloodletting vs Exjade??
 

My ferritin level is at 3102 and either one of the options is available for me to choose from. What is the community opinion and experience with bloodletting or taking Exjade?

Thanks!
Tii - MDS (11mo old post BMT)

Hi, I tried both and preferred phlebotomy. It's easy and quick and effective.

Go for the phlebotomies if you can. They are more effective with less side effects. But pay attention to how well your bone marrow replaces what is taken. Early on, John attempted to do phlebotomies because the desferal was giving him problems. He found he couldn't make up the blood fast enough and eventually, it was too much stress on his bone marrow. He ended up going on Exjade when that became available but had problems with it also. So eventually, as long as his HGB was 10 or higher, he had 250 ml taken off every other month.

Since you had a BMT, your counts are probably much better than John's and you should be able to handle it.

I hate taking exjade, but have little choice.

Deb

Update
 

Getting a port put in tomorrow to start the bloodletting on Wednesday. Since my cell growth has been painfully slow since the bmt, I am hoping the phlebotomy won't crash them. I really don't want any more blood transfusions in the event the HGB drops again, but I really don't want to take the risks with Exjade either. Fingers crossed.

Deb, why don't you like the Exjade? Side effects?

Hi Til, I hope your bloodletting is going well. I'm scheduled to start my 1st bloodletting later this months. I'm almost 10-1/2 months post unrelated donor transplant for SAA & 2 weeks ago my HCT was 40. (1 year ago I was receiving a unit of red cells every 7-10 days.) I was on Exjade for a few months prior to my transplant last year & although i felt pretty well physically while taking it, my kidneys were impacted by the Exjad so I'm very happy I can now try reducing my iron without meds . It will be interesting to see how long it takes my counts to recover with the phlebotomies.

I'd not heard that ports are used for the bloodletting before, does anyone know if this is the standard -vs- IV's?

Thanks :)

Bloodletting it is
 

Hi Dena,

I had my first bloodletting done 3 weeks ago, they manually sucked 24 syringes (600cc) of blood out of my port. I had the port placed because my veins are so tiny, hidden and invisible, and this way it eliminates the constant poking. I was really happy that the doctor suggested it!

The actual event lasted an hour, I felt fine throughout and after. I was concerned that I would be dizzy or light headed, or my hemoglobin would crash immediately, but over all I have been feeling fine, although I think the hemoglobin dropped just a bit. But I have an appointment again tomorrow and it will be interesting to find out where the ferritin level is now?

All the best to you :)

Tii - 37, MDS, T-cell leukemia. (BMT 12/2012) sister donor.

Thank you Til. I'm so happy to hear your first one went well. Best of luck with your labs.