Increased iron levels (hematomacrosis) and Prednisone

[Pawscat11]

I have been on Prednisone for 5+ years now usually at levels above12.5mg. As some of you know I was told earlier in the year that the wrong diagnosis may have been made & I was to come off it. I am now down at 5mg with pregabalin and naproxen added instead. . A few weeks a new rheumatologist was on the scene and looked back at all my blood tests over the years. He noticed a large increase in iron levels in my blood and I was referred to a hematologist. I went this morning to be told the mixture of Prednisone & Paracetamols was a major factor. It turns out I also carry one of the genes for hematomacrosis. The figures should be around 50 or 150 for a gene carrier and mine are 777. On Saturday I have to go for blood letting as its the only way to quickly reduce the iron in my blood. I have stop all paracetamols and alcohol ( I do drink wine) and carry on reducing prednisone as quickly as I am able. Is this something anyone else has any experience of. I am unsure of the ramifications of any of it. Thank you for being here.

[PMRpro Ambassador]

I'b bet it is the pred that turns out to be the greater culprit. Pred just added a bit to it. A lot of doctors labour under the delusion paracetamol is safe at all doses even for older patients - and it isn't always. Even without the genetic propensity for haemochromatosis.

There is a good reason we are to be monitored on a regular basis - it doesn't mean every month necessarily, but 6 monthly FBCs and U&Es would have caught it long ago had they looked at the results PROPERLY. Our hospital lab now automatically plots results over time,

Hope they sort it out. Which is worse I wonder - desperately anaemic or the opposite? Almost all the symptoms would be masked as PMR symptoms - and living in Spain, you have a suntan anyway I imagine!

[Pawscat11 in reply to PMRpro]

Yes I have just been looking at symptoms and many mirror PMR. The Paracetamols have to be removed because I probably now have liver issues ( they will look at this in a month). I just looked back at my very first bloods done here and iron level was 376 then. No idea why someone didnt see this.

[PMRpro Ambassador in reply to Pawscat11]

Because they didn't look at them - VERY naughty. Is your Spanish up to making a complaint? If you were in the UK I would be kicking up a stink since missing something a bit elevated is one thing but that much, totally another. When I worked in the lab, even I, as a mere minion, seeing a result like that would flag it to the graduate staff in charge of my station and I have even called a doctor with the result and suggesting a duplicate sample be sent in case of some random error so it could be checked.

[Pawscat11 in reply to PMRpro]

Yes its bad but PMR causes inflammation which in some people with the gene causes higher iron so they only looked at it from that way around not the iron was causing the inflammation if you get what I mean. Hemochromatosis is not as common in Spain as in UK as not as many of white scandi/ scottish descent which I am totally have done DNA testing a couple of years ago.

[Plains]

Hello, I am sorry you are going through this. I understand that they want you to come off prednisone as quickly as possible but that would concern me as well as others. It seems the other drugs are what is causing the problem. I can only speak to my reduction of prednisone, slow and easy has been the way to go 1/2 mg every four weeks. I hope things improve for you soon!

[Pawscat11 in reply to Plains]

Sadly the other drugs are not known to cause iron problems and prednisone is. As I don't appear to have PMR ( misdiagnosis) but haemochromatosis then the steroids are only causing harm not good. I have come down from 20 to 5 in 6 months with no side effects at all regarding fatigue or pain so its probably correct. I will go slower now because of possible adrenal issues after 5+ years on pred. Thank you for your care.