Has anyone developed AML in the process of solving these autoimmune disorders?

[BartsDad]

I was diagnosed with GCA 18 months, or so, ago. Everything was going fine, my blood counts were going up and I was down to 4 mg/day of prednisone and feeling good. Then my blood counts began moving in the wrong direction so I was referred to a hematologist/oncologist and got a bone marrow biopsy. The results were mostly normal for my age(74) at the time. It was decided to continue monitoring my blood counts. I got a second opinion that concurred. Several months later I had a second biopsy due to continually lower counts and an aggressive form of Myelodysplastic syndrome was diagnosed which quickly turned into AML. I’m now working my way to a stem cell transplant at Moffitt Cancer Center in Tampa, FL.

My reason for writing is to find out if anyone else has experienced this and to make others aware that this outcome is possible. I have no idea if my experiences are linked. I do wonder if suppressing my immune system “opened” me up to this outcome or if the two are unrelated. To this point I’ve been solely focused on beating the “beast” which, so far, is going well. This, however, is a dangling academic question that, at some point, I would like to have answered.

[BartsDad]

That should be “Developed” not enveloped. I don’t know how to edit original.

[piglette in reply to BartsDad]

You can amend your post by clicking on the MORE button under your post if you want. You can also use the button for deleting a post too.

[BartsDad in reply to piglette]

Thank you for that.

[PMRpro Ambassador]

Sorry to hear that - hope the process for the transplant goes well.

There is an increased risk of myeloid malignancies in a range of autoimmune diseases, including PMR and systemic vasculitis where the odds ratio is much higher. GCA is a systemic vasculitis - so I assume is included in the figure there along with other much rarer vasculitides.

pmc.ncbi.nlm.nih.gov/articl...

It is one of the reasons that regular monitoring with basic biochemistry and haematology is essential during chronic autoimmune illness.

[BartsDad in reply to PMRpro]

That was informative. Thank you! The reason I caught it early was the monitoring. A couple of weeks before it was confirmed I spread two dump truck loads of dirt and laid out three pallets of sod by myself. The point being had I just relied on symptoms it would not have been instructive.

[Grammy80]

I'm so thankful that this was detected and monitored. You are certainly in a good place. I hope you can start the stem cell process soon, and I'm sure it will go well. I'm in the Midwest and have seen three 'turn-about-cures' of AML among friends of mine with stem cell treatment.

I've been on steroids, GCA, for five years, now at 9 mg, still tapering, and will stop at 5 mg. I wish you the very best!! 💞

[AyJayBass]

Last year, my GP referred me to Haematology because my Monocytes and White cell counts were elevated. Haematology conducted a series of blood tests and diagnosed me with CMML. If it remains Chronic, it shouldn't be a significant issue, but they did caution me that it could progress to Acute, potentially leading to AML. During my most recent appointment, I was informed that, since my levels seem to be stable, they are referring me back to my GP to monitor the levels.