Post SCT haematomachrosis

[Dodders]

My now 6 monthly bloods done last year revealed high ferritin. I subsequently had 6 venesections, 1 a month. My follow up, delayed by COVID, revealed a still high ferritin at 2000, down from around 3000. The consultant was a bit surprised it was still that high. I was a bit disappointed and concerned. I've another 6 venesections booked. I know that my ferritin is/was high because of the numerous Hg transfusions prior to, during and post SCT, but if anyone has a similar experience and ,or an explanation re why my ferritin has not dropped as expected I'd be very grateful to hear from you.

[JediReject]

Hello Dodders , , as a fellow Transplantee I just want to say how sorry I am that you are experiencing this problem post SCT about which I'm not too well informed. But I think you're right to be concerned over it. However I'm not sure that with levels you have one venesection a month is enough but if that's the standard time gap between them fair enough ? I do recall reading (due to liver issues with GVHD ) if high ferritin levels have been ongoing it can be a considerable number of venesections ie 30+ up to 50 before it reduces significantly even though your consultant was surprised they remained high after 6 they dropped only by 1k. I know you ought not believe everything you read and I also know your Consultant has likely forgotten more than I know about such matters but it might go some way to explain the continued raised level.

The other thing is are you taking any sort of Chelation therapy but again I'm unsure if it's appropriate. So just chipping in things to try and help.

I hope you manage to get things under control in the coming months.

Good luck - Chris

[Dodders in reply to JediReject]

Chris, many thanks for your reply. The liver issue is foremost in my mind, aside from the fact that high ferritin can cause liver problems in and of itself. My liver function results were fine according to the consultant, but I know that the results can be ok even if the liver is only functioning at a low level. I did also wonder if I should have venesections at a more compressed rate, but I seem to remember, when I had PV, that even venesection can have unwelcome side effects. I intend to call the transplant clinic as they're likely to have better overall knowledge than a generalist haematologist who has been dealing with this. Thanks again for responding, it's a pretty esoteric subject when you add up all the factors, there aren't many of us out there!

[JediReject in reply to Dodders]

That's true my friend there aren't many who have or are experiencing ongoing significant post transplant issues. I think you're wise to try and gather more information as a starting point to move things on and perhaps pursue more in depth investigation / testing of your liver as that is clearly an immediate concern of yours. Cheers

[Dodders]

I've just spoken with a transplant CNS at QEH Birmingham where I had the SCT and she was able to reassure me that it can take a year, or more, of venesections to reduce the ferritin to an acceptable level. It may be that I've inherited the recessive haematomachrosis gene from both parents, but even if this were tested for and found to be the case the treatment would not alter, except I would need regular venesection for the rest of my life. I think the chances are it is iron overload due to the large number of blood transfusions I received.

[JediReject in reply to Dodders]

Reassuring to know for you I'm pleased you decided to give them a call. Can you decrease the time in between venesection or is it one monthly as planned. There are drugs to reduce iron which make you pass it but don't know what triggers their use or if would be right for you. Hope things are on the up in time .

Chris

[Dodders in reply to JediReject]

Thanks again Chris. I think I'm going to go with the consultant on this and trust in their expertise despite wanting to get the ferritin down asap. I also think the CNS would have queried the 1 a month schedule if she thought that was a bit too spread out. I wondered about drugs, but I assume they would prescribe this if need be. Onwards and upwards! Thanks once again.

[Xuzy]

Hello! Best wishes and I'm glad for your sharing success story following transplant.May i know your age during transplant?

[Dodders in reply to Xuzy]

Thanks Xuxy. I was 56