ERYTHROMELALGIA

[azaelea]

Here I am again! In my recent post I mentioned painful toe and foot and this has since got an awful lot worse. My little toe is purple and I am having the worst pain in it than I've ever had in my life. Searing burning pain which I am convinced is a symptom of ET JAK2+ mentioned. I've had no sleep for four nights . GP has given me 15mg Prednisolone for 5 days together with antibiotics thinking of gout. I've mentioned my theory to him today and we're to discuss on phone. I would really like to know if anyone has been diagnosed with this from ET and if so how they manage the pain and what medication is given. I was recently taken off aspirin because of a gastric bleed and have re-started Hydroxy 500 mg per day. Be pleased to hear of any fellow sufferers. Regards, Fran

[mhos61]

Oh Azaelea, poor you.

I haven't any experience of this. However, I have heard of a condition called digital ischemia sometimes associated with ET. At least run it past your GP for discussion when you have your consultation.

Hope things improve soon.

Mary x

[Applesnpears]

You mentioned gout. Has your doctor done any tests?

It would be good to rule it out.

[Su51]

I was diagnosed initially after burning foot pain Keeping me awake & when the physio couldn’t work out what the pain was they ran blood tests. Aspirin has taken most of pain away & I also use a cooling foot lotion if they are occasionally burning.

[Ebot]

Sounds really quite nasty. I really would get on to your haemo team PDQ. I once had an episode of unbearable burning / stabbing pain in my foot and was told by the CNS to call immediately if it ever happened again. I think it’s definitely worth their opinion on this one. Wishing you well.

[hansyhand]

I'm convinced I had this is in my fingers - went to the doc and she googled it and agreed. I think aspirin sorted it out eventually.... Not much help, sorry! It was very painful and I had real trouble typing while it lasted so can appreciate your frustration. Hope you feel better soon xx

[ashby6708]

I've been taken off aspirin because of purpura (forearm red wine blotches), so I decided to stop the Lansoprasol with disastrous result so started them again and booked a doctor's phone chat. Getting back to your problem; I've noticed my hands get sort of locked and lack mobility when I'm at rest and with all the hand washing, applying hand cream seems to get them going again. Hydroxy affects the nails.

[lizzziep]

Hi, are you on hydroxy? When I was on it, after about 3 years I developed ulcers on my toes, which started with burning pain and the toes turning purple!! they wouldn't heal and were VERY painful. When I eventually saw a dermatologist she told me it was a common side effect of hydroxy, I was then changed onto Anagrelide, which, of course, comes with its own plethora of side effects.

Stay safe

Lizzie

[MCurlygirl]

Get to a rheumatologist and checked out for gout. It's common with ET. As extra platelets die, they release their contents into the blood, including uric acid which can cause gout....ugh.

A horrible gout attack was one of my first ET symptoms.

[3195]

At diagnosis, on 2000, I was told that Erythromelalgia is a classic symptom of ET,

[Kathymoore]

Daily baby aspirin took care of my erythromelagia right away.

[krotsida]

Daily baby aspirin took care of my erythromelagia right away too.

Wish you all the best.

[Teresa-E]

Hi there! Erythromalagia was my first symptom of ET. I had it for 2 years before being diagnosed. The pain was unbearable in my toes and foot. It was at time working up to my ankle. When I was diagnosed with ET a year ago, they started me on aspirin daily and I have not had a single flair up since. The erythromalagia is DEFINITELY a symptom.

[azaelea in reply to Teresa-E]

Hi, did you have a burning red foot ? The dreadful pain is in my little toe mainly, which is purple. Foot and other toes "look normal" but sharp daggers in middle of ball of foot and in big toe. Haemo says Erythromelalgia would give me burning redness on whole of foot. I have been on aspirin since diagnosis of ET 2 years ago but had a Gastro/ intestinal bleed 4 weeks ago and was taken off it. Dr yesterday thinks it's a very small clot in the end of my little toe as whole foot would be burning and red with EM. Thanks ,Fran

[Tilly_Rose]

When I was first diagnosed with ET Jak2 my right foot under the arch was very painful with burning and it crept to my big toe my GP referred me to the haematologist and I was told what I had since taking low aspirin and hydroxycarbomide it has all gone but I know the pain you feel before my diagnosis I actually took ibruprofen which helped with the pain but I stopped Taking them as soon as I was diagnosed as they are not recommended with the medication I take Hope this helps a bit

[MPNBlog]

Hello azaelea

Sorry to hear of the pain in your toes. I suffer from erythromelalgia (EM) and will let you know what I have learned. Of course this isn’t medical advice for you, and it sounds like you need to get a medical opinion ASAP.

Firstly I’d be concerned if your toe is purple. My haematologist told me to get in touch immediately if I ever had discolouration in any extremities. It’s oxygen deprivation to the tissues and can be very serious and needs sorting out quickly.

I had 7 bouts of EM over 18 months, which the GP diagnosed as thrombophlebitis and I took buckets of antibiotics, not associating it with my PV (dx 2017: 45 ug Pegasys every 2 weeks). When I casually mentioned it to my haematologist, he quickly diagnosed (secondary) erythromelalgia which my GP had never heard of. Most cases are quickly resolved by 300 mg aspirin for 3 days. So your mention that you can no longer take aspirin is a challenge and I don’t know what the alternatives are to that. Might you be able to take it for 3 days then stop? Though you still need a solution long term and the current recommendations are for aspirin.

It is due to dysfunction in the microcirculation of people with MPN. I now also take low-dose aspiring twice a day because of the results of the ARES study (see article below). It is taken between 7am and 9 am and 7pm and 9pm each day. Since doing that I had no outbreaks. So after about a year I thought, do I really need to take this much aspirin and I recently dropped it back to 2 on one day and 1 the next day. Then last week I forgot one night, and had 3 days where I only took 1 aspirin/day. Low and behold, I currently have an outbreak, so I’m definitely back on 2 aspirin a day!

Although it’s rare, if you google Erythromelalgia and MPNs you’ll get articles if you are that way inclined:

1. (2018) Erythromelalgia: a cutaneous manifestation of neuropathy?

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

2.April 23, 2020. Low-Dose Aspirin Administered Twice-Daily Is Optimal for Thrombosis Reduction in Essential Thrombocythemia, Study Finds.

cancertherapyadvisor.com/ho...

This is a review of the ARES trial (ARES=Aspirin Regimens in Essential Thrombocythemia) and recommends low dose aspirin twice a day to stop outbreaks. The 2 references at the bottom of this article are about the trials if you are into reading that type of paper.

3.(2013) ncbi.nlm.nih.gov/pmc/articl...

Interesting Korean study, especially about the efficacy of aspirin.

I hope that helps and that you get some resolution soon. Best wishes.

[azaelea in reply to MPNBlog]

Thank you very much for this interesting information and the links which are very helpfu. I'm writing an update to you all collectively as so many good friends have replied to me. Fran