iron overload

[Bainbridge]

An early happy new year to all. Just curious if anyone has iron overload from blood transfusions and if they have started any therapy for this. My husband has high risk MF and has been dependent on monthly blood transfusions since his hemoglobin and hematocrit levels have been low 25 for hematocrit and 8.2 for hemoglobin. The MPN doctor did an MRI to see the level of iron and they said it was boarderline high. He has had 7 units of blood- once a month. So just wondering how and if the therapy affects people once they start since if he continues to require blood transfusions I am worried that he will need to start this therapy to release the iron since there is no way that I know of to naturally remove iron from your body. Thanks

[Confusingdisease]

is his ferritin super high? I have one gene for hemochromatosis and have high iron levels all the time, but my ferritin is normal so the high iron isn’t causing any problems

[Bainbridge in reply to Confusingdisease]

Hi yea ferritin levels have ranged to 1490 now

[OnlyFearIfNecessary]

hi, I had 9 blood transfusions from a surgery that went wrong and luckily the hospital did a blood dump in my main vein in my neck to my heart. My iron was very high at first, but the body naturally lowers it. I don’t have periods. Google foods that lower iron. Or foods to avoid if anemic. Don’t drink citrus with meat, that increases iron. Vitamin C with iron containing foods increases iron. Avoid meat! Avoid spinach, potatoes.

Do Drink coffee, green tea, eat chocolate, a lot of water, eat legumes, nuts, dairy

I hope that helps. At first I didn’t eat meat for 6 months. No eggs either

[beetle]

Are you saying he has had a total of 7 units from monthly transfusions?

My ferritin reached about 12,000 before I started iron chelation. I started with desferioxamine overnight infusions at home but I now take Exjade orally daily. My ferritin hovers around 5k to 6k despite treatment. I am getting transfusions every 2 weeks- usually 2 units at a time but occasionally just 1. I am unable to increase the dose of Exjade because of hepatitis.

I hope this helps but happy to answer any questions you might have

Best wishes Jan

[Bainbridge in reply to beetle]

Thanks for this info and yes my husband started one unit of blood transfusion since June and has had to have them monthly since his hematocrit and hemoglobin lowers due to RUX. So he has had a total of 7 units of blood since June. He did start Ojjarra the new FDA approved drug for MF and should help with anemia on Nov 1 but he had terrible side effects from stomach pain, increased spleen to fast heart rate that the MPN doctor told him to stop after taking it for 21 days and put him back on RUX. His ferritin levels have increased to 1490 this month from 890 back in June. So I was just curious about if he should need to take exjade what the side effects were if any and yes the RUX has also reactived his hepatitis which was never an issue so now he has another drug for hepatitis. It sounds like exjade can interact with hepatitis ? ?Anyway I know each of us is different and reacts differently. And after the new year his MPN doctor is starting him on this clinical trial of a drug to help with anemia. It’s DISC0974. So if you have any other insight would be great . Thanks for sharing and happy new year

It’s discmedicine.com/our-pipeli...

[champ30]

Morning,yes I am transfusion dependant on average 1 unit of blood every 10 days. I too did the infusion overnight until the exjades became available..Now taking 3x360 mg daily and my ferritin levels are now coming down from 2100 to 1100 but it's taken awhile.According to my specialist nurse my haematology doctor is going to review the dose at my Nex appointment on the 9th January.Wishing everyone a happy healthier New Year.Lynn.

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[Bainbridge in reply to champ30]

Thanks for this info. Did you have any side effects from medication that reduces the iron? My husbands MPN doctor says he does not need it yet since he is boarderline high in the iron. Good luck with your appointment on Jan 9

[DJK12]

I am intermediate-2 and on Ruxolitinib and Epo injections to keep my Hb up. Blood transfusions were stopped after my ferritin started getting too high. I started having venesections every two months to try and get it down. It's been a bit hit and miss as the first one made me very anaemic for too long, despite the Epo, so the amount taken off was then halved. Also they were stopped for months every time I had a hospital admission with infections. Although I'm still above 1000 they have been stopped indefinitely as rux is not working so well and my spleen is giving trouble, so living with the risk.

[jointpain]

My wife has MF, and has numerous RBC and iron transfusions, but, I know it's unhelpful to you is quite anemic mostly, her hematologist says she is losing blood through bleeding, but there is little evidence of that. Her iron reserves are always low, hematocrit more likely to be around 0.31 than in range. Have you tried injections of epo? They won't give my wife epo but it my help you.

[merlisa]

Hello,

I suggest you can use the medicine called “Deferoxamine" itis an traditional iron removing medicine. I don't know if this medicine is still available from your site. If so, it is a very effective and cost-effective iron removing medicine. This medicine requires intravenous suspension of water, and the injection time is very long. It is best to use the timed infusion function, and the dosage of the medicine should be given according to the weight.

If this medicine has already been phased out in your area, please use “Deferasirox”, Novartis medicine. The dose is calculated based on body weight.

[Flyingsteamer]

Hi Bainbridge, I have too much iron from transfusions, currently having 3 units or RBC every two weeks. I am in late process of getting a stem cell transplant so both my MPN specialist and transplant consultant are concerned to get my iron level down. I started on Deferasirox film coated tablets a few months ago, started at 3 x 180mg once a day but now up to 3 x 360mg once a day. So far only side effect is very smelly and sometimes uncontrollable wind, not very nice if anyone is nearby but I can put up with that.

[Bainbridge in reply to Flyingsteamer]

Hi thanks for your response and information about this drug to lower your iron levels. Right now my husband has had 8 units of blood about once a month but lately it seems to be now like every 4 weeks unfortunately since RUX and his MF make his hemoglobin low. I am not sure if I understand your note about in late process of SCT are you doing a SCT? My husband spoke to the doctor about that and there is only half match so we felt the risks are too high since he is 75 this year and has had other medical conditions. Thanks for your sharing

[Flyingsteamer]

Hi Bainbridge, yes I am due into hospital in March to start SCT process. My brother has tested as 10/10 match for me and as I'm 61 this year the risk/benefit makes it worthwhile. Hope everything goes well for your husband.