Rising ferritin level

[Kathy Stermer]

Have been transfusion dependent since December and currently have had 23 units of blood so far. As a unit of blood contains many more times the amount of iron the body can process and has no way of getting rid of it without treatment am wondering if anyone else has feedback on drug used to treat this. My level now a tich over 1000 (I think 300 high end of normal) and I’m holding off on taking yet another drug at this point. They tell me the GI side effects can be not well tolerated. I can still function with my hgb in the 7’s which is where I’ve been hanging but just wondering if anyone else dealing with this

[Amy Clark]

Hi Kathy,
My husband was diagnosed with MDS in August of 2018. His hgb was hanging in the 8s. His ferritin level hit 1800 in Feb. 2019, then he had four more units of blood to total 25 before they started him on Jadenu in March. On average his ferritin would go up 85 points with each unit, so he was likely over 2000 when they started the Jadenu. He had a some side effects on Jadenu like nausea and upset stomach, but he hung on with it in hopes of lowering the ferritin level. However, his liver enzymes went high (ALT 160), so they stopped the drug. Then he started reading up on high ferritin levels and found an article that talked about turmeric lowering ferritin levels of those with hemochromatosis. He decided it was worth a shot for someone with mds and after two months of turmeric his ferritin was 1200. We were very surprised! I have no other info than this. Hope something works for you. I will pray for you too. Amy

Benefits of Turmeric for Hemochromatosis

[Kathy Stermer]

Thanks for the info Amy! Always looking for natural ways to treat vs more drugs and have heard the GI side effects can be brutal.

[bobby pellegrini]

Hi Kathy, I have some questions concerning your husband taking numeric and his iron levels dropping like they did. Here are questions that we would be greatly appreciative of your responses:
1-What tumeric are you taking and who makes it?
2-How much (mg) per day & how often?
3-Did you husband have transfusions over that 2 month period & now 4 months later?
4-Now its 2 months later from your July post what has his iron dropped to?

Thank you so much! We wish both of you the best & God bless!

• This reply was modified 5 years ago by bobby pellegrini.
• This reply was modified 5 years ago by bobby pellegrini.

[Michael Busalaki]

Hi I am also transfusion dependent 2 units every couple of weeks. My doctor prescribed me Jadenu because my ferritin level got up to 1800. It was a battle to get my insurance company to take care of it. It took three appeals before they gave me the ok. As far as side effects diarrhea ,nausea. My counts while on this stay between 400 to 700. If you get it take it at night that helps.

[bobby pellegrini]

Thanks Michael for responding. Did you consider / or take Tumeric which can naturally decrease iron. Thank you.

[Michael Busalaki]

I will sure give it a try thanks.

[bobby pellegrini]

I am so sorry as I intended my numeric question to Amy. Amy we look forward to your response. Thank you.

[lynne]

I am having much better luck on Jadenu than I was on Exjade that I was on before. Lynne

[bobby pellegrini]

Hi Lynne. How much have your levels dropped? How about side effects? Thank you!

[lynne]

I have been on Jadenu for about 20 months. My ferritin was a bit over 3000 when I started,and it is now a bit over 900. I haven’t had any side effects so far.

[Margaret Bederaux-Cayne]

Hi Amy & everyone else – My Husband was not diagnosed for 2 1/2 years – they said it was some unknown thing destroying his blood, as soon as it was released into his system… so, a bone marrow biopsy, last Dec. showed it was MDS, Intermediate 1. All of his Red cell, white cell & platelets were extremely low. He has been having 2 units of red blood, transfused about every 2 weeks. Our Canadian measurements are slightly different – add a decimal place I think. His RBC is usually @ 97, after the transfusion, dropping in the week to 86 or lower – transfusions are done here when it drops 85 & below. He just had his ferritin levels done a month ago & it was 1998…We are waiting for a confirmation to get Exjade for him. Amy, I use turmeric all the time for cooking & would really like to know how much & how often your husband took the turmeric. I have looked at different bottles of it & wasn’t sure amounts for reducing the iron. Thankful to have found & be able to be with this group.

[lynne]

A suggestion from my own experience would be to have a conversation with your doctor re Exjade vs Jadenu for his ferritin levels. Lynne

[Kathy Stermer]

My doctor tells me exjade and jadenu are basically the same. I too have been getting transfused about every 2 weeks and will be starting jadenu as soon as I get a baseline hearing and eye exam. My ferritin now a bit over 1600 and goal is to get it under 1000. Have been using tumeric cream with little change in levels so will give drug a try. Hopefully the side effects (nausea and diarrhea) will be manageable or negligible. Just hate the thought of more drugs but little choice. The Vidaza after 6 months has had little effect on counts, Revlimid didn’t work so will now just treat low hgb and wbc for now (transfusions and neupogen) and give jadenu a try for rising ferritin level. It’s a bugger of a disease for sure. Another bone marrow biopsy in a few weeks to see what’s up and if anything has changed cytogenetic wise. Wishing all of you the best life you can live dealing with this tricky disease.

[lynne]

Kathy, I was on Exjade for several years with not a lot of success. Jadenu is a newer drug,so my oncologist/hemotologist switched me,and after 20 months I went from 3000 ferritin to 900 ferritin. I realize that everyone responds differently,but I wanted to share with you my experience. Lynne

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