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Peteringermany Sat Feb 3, 2018 05:32 AM

High ferritin levels and Exjade
Hi, my name is Peter and this is my first post.

I have CLL (Leukaemia) and my bone barrow is blocked with white blood cells so that the erythrocytes, the oxygen carrying red blood cells, cannot reproduce. I have had blood transfusions every two weeks for over a year to support my haemoglobin. I have had ferritin levels of about 2500 for six months. I take Exjade which does not seem to lower the ferritin levels a lot. I could take more but a higher dose upsets my stomach. At some point my body will suffer not from CLL but from the iron overload.

My treatment seems to have stalled. I'd like to find out if there are any other options to get out of living my life in two weeks blood-transfusion dependent cycles.

Suggestions, sharing of similar experiences and advice appreciated. I want to formulate some questions for the next appointment with my doctor,

Thanks, Peter

Neil Cuadra Sun Feb 4, 2018 01:43 PM

Have you talked to your doctor about other chelators? Besides deferasirox (trade names Exjade and Jadenu) there's deferoxamine (trade name Desferal) and deferiprone (trade name Ferriprox). Those are U.S. trade names. I'm not sure if they are the same in Germany.

Some patients benefit by taking Exjade in half doses twice a day instead of once a day. Some patients even take a combination of chelation medications to get the right balance between effectiveness and side effects.

Desferal is administered by injection or infusion, so it's more trouble than taking a pill, but some patients don't have a better choice.

You can also ask your doctor whether it would help to follow recommendations for lifestyle habits (example) and diet adjustments (example). Note that this 2007 journal article disputes some of the diet recommendations -- see the section named "Hemochromatosis patients should be on a low-iron diet." But there's general agreement that you should avoid raw shellfish and avoid mistakenly taking any iron supplements.

Peteringermany Mon Feb 5, 2018 08:17 AM

Hi Neil
Thanks, very useful suggestions. I'll follow them up.

whackerswalsh Wed Feb 7, 2018 10:58 AM

Hi Peter,

My husband (with SAA) is having the same problem with high ferritin levels, he is now edging towards 3000. This combined with Haemochromatosis is a double whammy. He tried Exjade and just couldn't take it at all. And the hospital cannot explain why levels are rising, even though he also injects Neorecormon 30000 (EPO) weekly which is proven to reduce iron.

I have also taken note of Neil's post and the alternative chelation drugs
for follow up here in Ireland with our team.

On an alternative path I read in this forum that taking Wheatgrass can also bring down iron levels (from patients own experience).
We are going to try this through juicing on a daily basis....can't do any harm and may even improve his nutritional levels!

best of luck

Marlene Wed Feb 7, 2018 11:44 AM

John couldn't tolerate a full dose of Exjade. His approach was to start at a low dose of 250 mg/day and he worked up to 750 mg/day. He never got to a full dose. He would take a break from the drug for about a week every 3 or 4 weeks and start it up again. His biggest complaint was nausea. He finally reached a point where his kidneys didn't like it so he stopped completely. Fortunately, he was at a point where his HGB was holding at 11 and they would do therapeutic phlebotomies every other month.

Peteringermany Sat Apr 14, 2018 08:31 PM

Thanks for the answers.
Latest news is that my CLL is in remission but I'm still not producing erythrocytes and so I still need blood transfusions every two weeks. It is possible that ibrutinib is suppressing the red blood cells and is being reduced. Meanwhile ferritin levels approaching 3000. Best wishes, Peter

derekvof Fri Aug 24, 2018 04:55 PM

During my two bone marrow transplants, I had over 100 blood and platelet transfusions. While I was in the hospital for 5 months for my second transplant, I was started on Exjade. Unfortunately, it really didn't do anything for me.

By the time, I successfully got out after my second transplant, my doctor monitored my Hgb. Once it was higher than 12, they started phlebotomy (therapeutic blood letting). They've been taking on average a pint of blood per month. Since I was released 15 months ago, my ferritin levels have dropped from over 4,000 to about 2,000. I'm still having blood taken regularly.

Not sure if that's an option in your recovery, but seems to be working for me.

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