erythromelalgia

[03271115]

8 years ago I was diagnosed with ET. I've been able to manage my platelet count with baby aspirin. My only complaint is my skin. The rashes are at night and sting, itch and bleed. Only ice packs work to stop the suffering. I've been complain to my and other specialist they say I have eczema and just shoved me aside. Basically today I found out there is a rash associated with ET, erythromelalgia know about this rare condition associated with MP? I have really lost faith in my doctors.

[MissLesley13]

Yes I have erythromelalgia also. I found out just a few months ago . My feet are constantly red hot , my skin itching and I have some redness on my face now. It was nice to be told what it was but I was just ignored for a while when I mentioned what I had. Don't lose hope unfortunately some of us have something a bit rare that make us unique. The medical team just need to catch up

[hunter5582]

Erythromelalgia is a microvascular symptom that causes pain-itching-redness-swelling in the extremities. Erythromelalgia is associated with MPNs, including ET. It is not rare. Estimates range between 20-30% of people with ET will experience erythromelalgia.

Eczema is an inflammatory skin condition that causes redness-scaling-itching-pain-blistering-bleeding. It is not the same thing as erythromelalgia and has a different cause.

Note that you can have both conditions co-occurring. I have experienced this co-occurrence on my feet/toes.

Treating MPN-related erythromelalgia is based on treating the underlying condition. Altering the interaction between blood cells and the vascular endothelium, preventing platelet aggregation, and possibly cytoreduction would be the considerations. I found an appropriate dose of aspirin resolved the erythromelalgia. Note that some people need more than one low-dose aspirin.

Treating eczema can be done with various topicals and systemic (oral) medications , some of which are biologics. Eczema can sometimes be prevented by maintaining a healthy skin moisture barrier and avoiding triggers. I have had great success using a ceramide-based cream (CeraVe), and avoiding soaps/detergents with perfumes dyes. If I do get a flare, Eucrisa (topical ointment) works great.

It sounds like you have been blown off regarding this issue. Suggest that you consult with a MPN Specialist rather than a regular hematologist. mpnforum.com/tsr-the-list/ Also suggest that you consult with a dermatologist. You may have a co-occurring condition as I did.

Wishing you success moving forward.

[03271115]

as thank you

. I have been to four different Bormet/who supposedly experts not one of them has been able to diagnose or even mention the word erythromelalgia. do you by chance know any reputable for essential thrombosis anywhere in the United States? I’m getting desperate now. I don’t understand how any that is supposed to be an MPN specialist does not know about this skin rash. I’m in so much pain constantly, especially at nightmy and my skin bleeds. It is also spread to my face which they tell me as rosacea, but I don’t think it’s rosacea. I think it is due to.erythromelalgia

[hunter5582 in reply to 03271115]

Here are two lists of MPN expert doctors.

mpnforum.com/tsr-the-list/

pvreporter.com/mpn-speciali...

Given what you describe, I would suspect a combination of something directly MPN-related like erythromelalgia and a skin condition like eczema or psoriasis. It is important to note that the dysregulation of the JAK-STAT pathway does more than cause the body to make too many blood cells. It also causes the body to make many inflammatory cytokines. This systemic inflammation can cause a host of issues.

Suggest that you need to see both a MPN Specialist and a dermatologist. If you see a MPN Specialist at one of the larger medical centers you may also be able to find a dermatologist who can be part of a collaborative treatment team.

[CritterLover5150]

I have had Erythromylalgia and chronic Urticaria for 50 years. While researching those I came up with my ET just recently. No one paid attention. The Urticaria is a big problem. Have to stay cool, wear loose clothes, no hot baths or showers, seamless underwear. Every day is such a hassle. I was prescribed Hydroxyzine for the itch. The Erythromylalgia is my hands and feet. Swelling, burning, itching and pain. Ice is my go to. And I always carry a hand fan 🪭. I’m now on Hydroxyurea for blood cancer with the baby aspirin. I believe these are all linked together. I found out doing my own research. Good luck to you and I hope some of this info helps. Take care 😊

[Minify]

Hi, I have erythromelalgia too, but only in my feet, and primarily my right foot. Before I was diagnosed with ET, I thought it was athletes foot and couldn’t understand why it was so persistent. My symptoms abated after my blood counts normalized on Pegasys. Every once in a while it will bother me again, and I found putting Voltaren gel (Diclofenac) helpful. Voltaren is a local NSAID, so I think the anti-inflammatory properties of the drug calm down the inflamed microvasculature. I’ve also used Triamcinolone cream (local steroid) and that has worked too.

It does sound like you may have a co-occurring dermatitis. I hope you can get some relief — I know it’s a very aggravating condition!

[Amethist]

i too had erythromelalgia when Dx with ET 8 yrs ago. My platelets were around 1400. Since then, I have used aspirin to keep the erythromelalgia under control. I just get it in my toes. The aspirin doesn’t affect my platelet numbers , but does quickly give relief to painful, hot toes. I read several articles that aspirin is extremely good for controlling erythromelagia, see here as an example: wjgnet.com/2218-6204/full/v...

For a short time I did try baby aspirin. I found they were completely ineffective at controlling erythromelagia. Since then, and after more research, I decided to take just ½ a regular aspirin. For me, I have found the regime of ½ a regular aspirin every 3rd day completely controls my erythromelagia, ( burning sensation, hot swollen very uncomfortable toes)

The other issue,many ET people get , is the very itchy dry skin, which may bleed due to over scratching. Aspirin does not seem to have any effect in this. Again I’ve been very fortunate not to be greatly troubled with this, having only ever had 2 small areas, one on my shin another on upper arm. I’ve tried lots of things over the years. The arm issue was totally and permanently eradicated quickly after taking a dewormer/ anti parasite. My shin area also improved but didn’t completely go away but I do find cbd oil gives excellent relief, for days.

There are lots of possible causes for skin problems. Obvious ones would be allergies , maybe skin products, foods, parasites… It’s going to take a little detective work to discover what works for you. Hopefully you will find a solution very quickly.

[03271115 in reply to Amethist]

Thank you for clarifying. What is the brand of aspirin that you use? I take a bath aspirin each day but it’s not helping. Do you think your rashes because of the ET?

[Amethist in reply to 03271115]

I just buy them at the local supermarket, very cheap, no particular brand. But definitely not enteric coated. As aspirin is supposed to treat erythromyalgia, but it doesn’t for you, I would definitely look at other causes

With itchy skin/ rashes, as I’ve said, it’s not a big issue for me. I guess it’s possible it’s related to ET, but since for me one area completely went away with anti parasitic Rx, and that’s some months ago now and hasn’t come back, it does make me wonder. We’ve had pets most of our lives - we deworm them , but not ourselves 🤔

Skin is a large organ and helps your body detox. Do have a good look at what you use on your skin or eat. Maybe try to keep a symptom diary for a bit to see if there could be a link with what you eat/ use.

Gut health also extremely important for overall health. Any gut issues need to be resolved asap.

Also have you had a blood test to rule out vitamin deficiencies? If not, it wouldn’t hurt to do this. ( Eg: vits D, B12, folate, check iron, ferritin, thyroid levels , would be a good start. )Always get a copy of your blood test results, with ranges, so you can see where in range you are. If you are towards lower end, might be worth trying some supplements. Lots of online resources regarding what your levels should be for “optimal” health. Being just in range is not always sufficient as we are all different.

[03271115 in reply to Amethist]

Can you share how many milligrams of aspirin and will Advil work?

[Amethist in reply to 03271115]

I personally take 150mg of regular aspirin every 3 days. When my toes tingle, then I take this dose of aspirin. The tingling is gone within an hour and the effect lasts 3 days.

Never used Advil, so I can’t answer that .

[SmotMot]

This is how I was disgnosed with ET in February 23. It was my first symptom, hot swollen feet on exertion and in warm rooms and bed at night. I diagnosed this myself but my GP ignored my concerns but thankfully took a blood test.My platelets were 800-900 then,400 now but the erythromelalgia persists. When I use ice to cool my feet I always insert my feet in plastic bags to protect my skin. A foot fan is a blessing.Alcohol makes it worse by causing vasodilaton!

Asprin has not helped me at all and the haematology department only smile back at me when I mention this to them.

Its been a life changer!

[03271115 in reply to SmotMot]

thanks for your response, but I don’t understand what has been a life changer?

[SmotMot in reply to 03271115]

Sorry I will try to explain. I now have to plan ahead before I do most things because of the Erythromelalgia.

My feet are the part of my body that suffers mostly ,although I also get it in my hands and sometmies ears!

My husband and I sleep in seperate bedrooms because he prefers a warm room. I also live in the kitchen area in winter because I can't tolerate the heat from the wood burner.

I sleep with a bowl of icy water by my bed if I need to cool my feet with plastic bags to protect the skin..

I live in open sandals in summer and rarely wear socks in the winter.

I love walking but can only go so far because my feet flair up and become uncomfertable.

When we go away to stay in a hotel I take the bowl with me and a small batterie run fan and ask for ice from the bar before I retire !

Shopping can be a problem ,I find the aircon in the car a huge help to cool swollen feet.

I've decided to forgett holidays abroad .

Its 2 years now since I've had Erythromelalgia,

I used to panic when my feet became hot and painful but I have now learned how to adapt to most situations and relieved that I live in Wales not a hot country.

I tell everyone I need to that I suffer from a blood condition that causes hot feet and hope they understand when I make strange requests!

I apologise for the long answer.