After 6 months of symptoms, I was finally given a diagnosis of erythromelalgia by my hematologist this week. While I’m not happy to have erythrolmelalgia, I’m so relieved someone finally figured it out…and listened to me.
He has told me to take one baby aspirin a night, which he thinks will greatly improve my symptoms. I have three questions.
Does aspirin always help secondary erythromelagia?
If aspirin works, does it rule out primary erythromelagia?
If aspirin does not work, does it mean it’s not secondary?
I have not been diagnosed with a primary cause…do doctor’s usually assume erythromelalgia is secondary?
Thanks so much for the info! So far, my blood work has been “inconclusive,” but my CBC (along with symptoms) has the hematologist trying to rule our PCV. I feel like I’ve had every blood test known to man lol…but he’s running a few more. All of my rheumatology tests have been negative, and my CBC has been mostly perfect (one high hematocrit reading)…it gets very frustrating.
It makes me hopeful to hear aspirin helps you significantly. I just started, so I can’t tell if it’s helping yet.
If you don’t mind me asking, do you have an MPN? I couldn’t get a sense of whether the hematologist thought I did or not…the only thing he was sure about was the erythromelalgia.
I don’t have an MPN. Although it doesn’t rule me out in the future. I am coming up to year 3 with EM and will have another blood test shortly (was told every 6-12 months to monitor)
Good that your other tests are negative… the more the better I understand, I’ve had a complete workup.
Endocrine tests, Neurology tests, Rheumatology tests… the only thing found was a low C4 (Complement Level) which by itself doesn’t raise any red flags. I also did have borderline Anti-DSDNA but its such a sensitive test, they weren’t concerned.
A single high hemocrit shouldn’t be a worry? I’ve heard of people with Sleep Apnea having temporary high readings. I assume you will need a high hemocrit and high haemaglobin to start looking at Polycythemia Vera?
Ive read that there is a median of 2.5yrs after EM whereby an MPN could pop up.
Its really a bit of watch and wait in that regard.
At least the doc picked up EM - it can be a very time consuming, frustrating diagnosis to reach for some people!
Yes! Very happy my tests have been negative so far…although it does get frustrating not knowing what is wrong. I think the one high hematocrit raised flags in conjunction with many of my symptoms, but I don’t think PCV is an issue (IMO)…at least right now.
It is very helpful to know that erythromelalgia can proceed MPN…will definitely keep that on my radar.
I have to admit I was very relieved to get an erythromelagia diagnosis…while I did not want it, I had read about so many people suffering for so long with no diagnosis…I knew my symptoms fit and they have been life altering…not in a good way…grateful the doctor recognized them too.