Iron overload without treatment???

[jayc]

Hi everyone, I need your input and experience . I was told last week that I now have iron overload and my doctor(mds doctor of excellence), agrees with me about no treatment with chelating meds. I was dx with mds, -5q almost 3 yrs ago. I was treated with revlimid every day for 18 months but then it stopped working and my anc went down to .5 since then I receive 2 units of packed rbc every 3 weeks . my counts are: wbc 2.0, rbc 2.8,hgb 7.9-9.2 (mostly in the low 8s),anc now at 1.1,ast 38, alt 65 total protein 5.8 and ferritin 1582. So far I have had 28 tx.
He stated that the iron was in my liver and that I continue to stay on tx until I tell him to stop. He said not to worry because I could still live a long life. Chelation wouldn't be a positive exp for me because of the many side effects and some fatal. My symptoms of mds are like everyone else, fatigue, weakness,dizziness etc . I have adjusted to living with many limitations and this disease has not affected my spirit or me, only my body. therefore I do not want to disrupt my present status quo by adding something to my body that will have me feeling sicker than I am now. I prefer to live out the remaining days of my life in peace, joy , thanksgiving and helping others where and when I can. Is there anyone in this forum who is in the same position as I am ?

[Birgitta-A]

Hi jayc,
You know most doctors start chelation in transfusion dependent low risk patients when the ferritin value is more than 1000.

It is true that your liver can handle iron overload a long time but you have to control the liver tests often.

Now it is almost 8 years since I got the dx MDS Interm-1. My bone marrow was very fibrotic and I was transfusion dependent at dx with a HGB of 7.0 so I had in fact been ill a long time before dx.

After 40 units of blood I started with chelation. The first drug was Desferal given in my port-a-cath during 4 days in connection with trandfusions. That drug is well knows since almost 40 years and I have not had any adverse effects. A port-a-cath is a small device inplanted in the chest with connection to a big vein.

I have now recieved 186 units of blood. i had good results with Thalidomide and was transfusion independent almost 2.5 years. Now I take Revlimid and don't need txs but we don't know how long time i will respond.
Kind regards
Birgitta-A

[Mseth]

Hi Jayc,

My mother is transfusion dependent, she has received 22 pRBC since April 2013. After 20 units, the doctor wanted her to start chelation with an exjade equivalent in India by the name Asunra. I was extremely nervous about her starting the drug due to the adverse effects i had read about. She started in Dec 2013 with 100 mg, then 200 mg and now is on 400 mg/day. She is able to tolerate it well, so far and may increase slowly. Ferritin just before chelation was 3600and after 2 weeks it came down to 3100.
Her liver and kidney function is also fine after start of chelation. We will keep a close watch on the kidney & liver as she increases the dose/day.
How did your doctor diagnose iron in the liver? Some doctors say believe iron overload does not affect the body for atleast 3-4 years, some say 10 years, i guess noone really knows.

[riccd2001]

I've been taking Exjade for about five years and I have to keep a close eye on Creatinine because one of its side effects is to push up Creatinine levels beyond my "normal" level. When that happens, I stop for about three weeks and confirm the Creatinine level has come down. My doc and I came to an agreement that keeping the serum ferritin around 1000ug/L works OK for me. And I've had quite a few more transfusions than you.

[jayc]

thank you all, I am going to copy down your experiences with chelation and present it to my doctor on my next visit which is not until Fef 12. Until then I will do more research on my own so that I will have enough fuel to start a fire in a new direction that will give me more hope and life.

[jayc]

I saw my cardiologist today for results of my echocardiogram. It shows that I have stenosis in mitral and aortic valves. I have had heart surgery twice for valve replacement (2004 and 2007 ) and had several complications so he said with my MDS I am a poor risk. I wouldn't have done it anyway. He said that due to these results I cannot do chelation therapy because my heart is already taxed and any infection will be fatal. I still appreciate everyone who shared suggestions with me.

[Birgitta-A]

Hi jayc,
It is true as Mseth's mothers's doctor says that MDS patients can live many years with iron overload. Patients with Thalassemia since childhood who receive many txs develope complications for example damage of the heart. Most studies of iron overload have been done in this patient group.

MDS patients manage much better and I have read studies from world famous clinics where they have patients with ferritin values higher than 15000.

MRI of my own heart some years ago didn't show a trace of iron.

Here is a study that shows that myocardial iron overload (iron overload in the heart muscles) is not frequent in MDS patients and it is not correlated with liver iron concentration and serum ferritin levels.
https://ash.confex.com/ash/2013/webp...aper59448.html

Remember that we manage well with one third of the liver.
Kind regards
Birgitta-A

[jayc]

Birgitta-A , thank you for caring. I just want to make it clear to everyone that the stenosis in my hearts valves was not due to iron overload. I am no longer going to think of my MDS and stenosis as a problem in my life but just as little bumps on the road to make me stop and think how blessed I am to have so much to be thankful for , things that cannot be affected by disease or misfortunes. life goes on and so do we.

[Birgitta-A]

Hi jayc,
Good! You know I try to fight the disease but it has never been the most important thing in my life.
Kind regards
Birgitta-A

[Caregive]

My husband was taken off Exjade due to other blood levels for other ailments. Last I looked at paperwork his ferretin was 2600. That was last week. So what happens now? I will call the docs in a few days to arrange the next appt but wonder what you all know about that. He didn't have trouble with Exjade but at 82 is not a candidate for it's use. I forget which numbers were too high or too low but I knew when I was researching his taking it. So I agree with the doc.