Iron overload after going on Pegasys for PV

[fernie]

Hi all, i have PV and have done phlebotomies for many years, prior to that and PV I was a blood donor. 3.5 years ago I went on Pegasys interferon and it went well and my bloods are good BUT since then I've slowly been loading iron. First the ferritin went up to 600. If I went vegetarian it would go down a bit. Once I ate meat again it would go up again. I was kind of testing it over the past year. My transferrin saturation has also been slowly going up, and now I'm at the loading iron level >45%.

My query is, is there anyone else out there who loads iron after Pegasys? I know most PV people tend to be low iron because of all the red cell production, and the interferons tend to put your iron back to normal levels. Thanks all.

[hunter5582]

I have not heard of the IFN causing an iron overload. It makes me wonder if the PV has been masking an underlying co-occurring iron dysregulation disorder. Suggest this is an issue to review with a MPN Specialist for the best answer.

[OZland]

yes , same here super high ferritin. My MPN specialist confirmed that PEG for some people increases ferritin, but not to be concerned as it is not same as high ferritin in non MPN

[ainslie]

I would be surprised if it’s the Peg, quite a few on Peg tend to have trouble getting ferritin up to a decent level

[Hopetohelp]

have you had a blood test for haemochromotosis? It’s a gene that makes your ferritin high.

Good luck

[fernie in reply to Hopetohelp]

Yes, I am a C282Y carrier, and I also have other defective genes in iron metabolism. My problem is that most haems. only look at people with 2 x C282Y, and haven't really kept up with the DNA science on iron metabolism, so I just get turned away. I was once a blood donor, then I got PV, so they bled me regularly. Now I'm stuck unfortunately and cant donate anymore. Maybe I need to give up on the Pegasys?

[Hopetohelp in reply to fernie]

Yes I am a carrier of the gene too and I agree the docs don’t think it makes any difference. Hope you get things sorted

[fernie in reply to Hopetohelp]

If you have AncestryDNA or similar you can put your raw data through Checkiron.com for free and see what other interesting iron genes you have. It's a Citizen Science project being run in the UK. great science going on there. It also looks at all associated genes, like some JAK2 types. All free and a now a Charitable Trust. Been well worth it for me. All the best.

[Hopetohelp in reply to fernie]

Thank you

[RCBr in reply to fernie]

I am also a carrier for haemochromatosis C gene...unfortunately my ex husband was too, and therefore my son had haemochromatosis diagnosed at 15. Pegasys didn't affect my iron levels...the ferritin remained low. I have heard of others having both Haem and MPNs in the past, but I'm afraid I don't know any in depth information about it.Rachel

[Manouche]

I had the same problem. My ferritin level was above normal for a while. It got quickly better at a lower dose of weekly pegasys.

[fernie in reply to Manouche]

I've decided to stop Pegasys for a while. See if my symptoms go away. I have peripheral neuropathy pretty bad since starting this near 4yrs ago. I can always go back on it. So back to phlebotomy for me. My allele burden was down to 7% last year, so I have some wiggle room. Maybe my iron levels will go down too.

[Mieshie]

I have ET diagnosed 3 years ago and inherited Thalassemia I’ve known about forever. HCT and HEM have always been been almost perfectly straight line below normal range my entire 74 years. Ferritin has been measured since being on peginterferon for two plus years. The first year tests were below normal ferritin. Hematology gave me an iron IV after each which made me feel great for several months. The second year of peg I was feeling very sluggish again but no iron IV as ferritin was around 800. The most recent test in this year 3 it had climbed to 1100. I was alarmed but Hematology said do not worry. Will get tested again in June. No proof peg is behind this but I am super suspicious it is else why recent change? What accompanies ET for me is lost sense of taste and interest in food, rarely feel hungry and don’t eat much. Try to eat healthy for what little I do eat. Then there’s the significantly increased amount of water consumed. My blood tests are biweekly preceding 90 mcg of peg. Most every test result is in normal or below normal range. Exceptions are platelets that I’ve settled on 600-650 and 1 liver enzyme that is 15 points above normal. Hematology says this is about as good as it gets because of my two DNA caused blood disorders. I am not complaining but not giving up either. There has to be more to learn from this experience. Thanks to fernie for bringing up the topic and comments for adding another piece to my ET puzzle.

[fernie in reply to Mieshie]

I've just found out I have the genetics for Charcot Marie Tooth disease. Wow! Interferon is on the "toxic" list for people with CMT. I have always said some drugs seem quite toxic for me, but usually got the rolly eyes. A whole lot of research needed here. It does explain a bit of family weirdness, that's for sure. My sister had hammer toes operated on in her teens!