Chelation therapy

Welcome to Connect, @sandy150bates Higher than normal ferritin levels can indicate an overload of iron in the body, which in turn may lead to various side effects such as organ damage. So it can be helpful to lower the iron to a less toxic level. Sometimes that’s done through routine phlebotomies where a certain amount of blood is removed to accomplish that goal. Or chelation therapy, where the iron is bound to the chelating agent and is removed from the body.
I know it can be unnerving to start a new medication, especially after reading all the side effects. But there is a risk in also not taking steps to prevent damage with too high of an iron overload.

I did find another member in the forum who has had experience with Deferasirox . @gloriafuerza, in this comment shared that she has frequent transfusions and was recommended chelation therapy. Hopefully Gloria will pop into the conversation to share her experiences with lowering her ferritin levels with medication.

Is this patient with MF you or a loved one? Are they receiving any treatment for MF or having frequent transfusions?

I have very high ferritin levels and I have chelation therapy. This high level of ferritin is the result of having blood transfusions (2 bags) every 4 weeks. I have myelodysplasia (low or immature red blood cells). I started taking deferasirox, known as Jadenu to me,on 6th June this year and felt some pain around abdomen. I have read that your body gets used to the tablets after awhile and that seems to be the case. I also have noticed that if I have the tablets after breakfast and not before helps. I have blood tests every 4 weeks to monitor health of liver, kidneys etc. I am a first time contributor. Thanks for having me on.

Thank you so much for taking the time to share your experience with chelation for your high ferritin levels, @wakeley. I know your information will be very helpful to @sandy150bates who is just beginning this journey.

How long ago were you diagnosed with MDS? Are you on any other therapy for this besides having monthly blood transfusions?

Primary myelofibrosis was diagnosed in September 2019. Have had monthly transfusions, usually 1 pint, with HGB levels hovering around 6.1. Ojjaara was approved in September, 2023 and I started taking it in October, 2023. Since my doctor was concerned about the high ferritin levels, 1600 to 2000 since January, he recommended Chelation therapy and gave me information on deferasirox. Side effects were a great concern until I starting reading up on problem associated with high ferritin levels. It would help me mentally if I knew of others who are now on Chelation therapy.

The patient with MF is a loved one. His story is told below. Thank you for all your comments.

I was diagnosed officially in March 2022 after having a bone marrow biopsy but for the year before it was known that I had low haemoglobin levels. I live in Sydney, Australia and unfortunately there is no other treatment available. There is a tablet that trials have had great success with. It is approved by the Therapeutic Goods Association but is not on the PBS whereby costs are minimised. Government hasn’t approved it yet. Disappointing.

Hi @sandy150bates. I agree, it’s so helpful to be able to speak with other people who are taking the same meds or have the same diagnosis…great anxiety reducer. @wakeley shared their experience with high ferritin and chelation with Deferasirox with you. Were you able to see this comment?
https://connect.mayoclinic.org/comment/1397579/

Yes, I saw it and it does give me some positive thoughts about it. We have 3 months to make a decision. Thank you for all your help.

Hang in there @wakeley. We waited from 2019 to 2023 for the medication Ojjaara, but it finally came through. Keep us informed. We wish you the best.

I listen to Dr. Ellithorpe for a different perspective. She is with the Tustin Longevity Center in California. She is a what has been known as a DR of alternative medicine, an integrative Dr. What she speaks of often is chelation therapy. She has used it or prescribed it for decades as she toots her horn that she has been at this way of medicine for 40 plus years. She uses it to remove many metals in patients, not just iron. I have heard and read her posts about it so often I asked my nurse in Hematology. My nurse said it is used at the city of hope, but usually only to remove excess iron.
Someone on bc.org had recommended her and once my sister began to speak of red-light therapy and other natural therapies, so I went back to her website. Not everyone believes in this type of treatment and sometimes I find her practices odd.
Heavy metal toxicity. She can be found on u-tube speaking about it. Rita Ellithorpe. Recommends ACAM.org- Chelation Therapy.