hello everyone
Does anyone have Erithromelalgia?
I only have it in my toes, balls of feet, and in one thumb. At the moment a mix of a paracetamol and half an ibuprofen seems to work reasonably well for feet and toes but not quite so well on my thumb.
Jolly trying in the night.
I wondered if anyone else has tried other drugs?
Thanks
Louise
Aspirin stopped the erythromeralgia for me.
What symtons does it have? Thanks
Hi
Symptoms will vary from redness and swelling to itching to a burning pain.
Works on toes but not thumb Hunter. Thanks.
I have severe erythromelalgia. Its my main symptom and asprin has no effect on it at all. Heat , exercise, and even walking triggers it. It mainly effect my feet . My main objective every day is to keep my ffet cool.
I have suffered from it for 18 months and its the symptom yhat got my ET diagnised
Morning. A much ignored symptom by haematologists I think. You have my sympathy.
Mine comes and goes but sometimes I hobble round like a 90 year old. We used to walk miles but I m now terrified of walking and have just cancelled a walking hol in Austria.
Hey ho. Onwards and upwards. Thanks for your reply
Hi Louise,I have been going to mail you for ages ,since you posted last & were unwell.Sorry ,been in the wars myself,blood transfusions ,injections & feeling really that my end was on its way.Noow you have the Erith.pain,haven’t experienced that but get awful pains in my hands & severe pins & needles!!Worse at night….the heat here is ghastly,impossible to cope with.Manage a very early breath of air when we let very hot dogs out ,,then that’s it AC all day for me ,dogs & my long suffering husband.
Hope you feel better soon from pain,What can we have next.
Swop you your lake distric for my
Lot et Garonne!🥰💕
Hi
How are you Sally I was wondering the other day. So rotten for you. The heat must be dire - bit damp and grey here but nevertheless…..
I’m a zillion times better since I ve been on Ruxolitinib thanks. My haemo said I had a rare and serious reaction to interferon. Just my luck!
Anyway, hoping the Rux does the trick.
There were a few shadows of MF in my last blood test but neither haemo or I too worried at the mo. Keep going lovely lady and stay in touch.
Love Louise xx
Did your Haem say what your rare and serious reaction to interferon was? Your post below you indicate IFN made the erithromelalgia worse. Were there other troubles along with that?
To be honest I didn’t set out to frighten anyone with regards to interferon side effects. I was very unlucky - the majority of people do really well on interferon.
Best not to discuss details. Louise
If you're personally not comfortable discussing your experience that is quite understandable and don't stress any more on it.
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Otherwise it's best to discuss these details, with care and accuracy. My doing so has saved at least some members a bad outcome. Even one very bad outcome is something both the authorities (FDA in US) and members here should know about. IFN is "tough" medicine as my Dr said, and anything that can help members know what to watch is helpful. We MPNs are pioneers right now in the wide use of pegged IFN, and we can help the public with our experiences. These "phase 4" studies often bring out those rare events that are so important to know. For example we're finding severe autoimmune effects on IFN are really happening (as listed on the label) vs the trials that had few or none. Severe organ damage has been posted here also. Same applies to Rux, HU etc, we benefit from knowing which rare events to watch for.
Conversely if my related posts had been here two years ago I'd have read them and still have my health and worth life now.
Mine disappeared at the same time I started to take a high quality turmeric and pipperine supplement daily.( I was already on aspirine 75 mg.) Sallie
I believe I have it as well. I was recently in the hospital for 10 days and during that time I did not experience it at all. I was kept on Tylenol around the clock, which I am sure masked it. When I came home it appeared again. It's mainly in my right foot(toes and ball of foot) and with a new hip it is so disappointing to have this. Is paracetamol an anti-inflammatory drug? I cannot take aspirin or any natural supplements since I am on blood thinners and told not to take Tylenol right now because it raised my liver enzymes!!! I am wondering if any type of topical may work? Is it due to microvascular changes? Is it only PV patients that experience it? My extended stay in hospital was due to PV interference. Thanks for any input.
Hi Pog
It seems to vary from patient to patient. I think it started about 18 months ago with numb toes but a run in with interferon seemed to make it worse! Toes and balls of feet - and one thumb! Very odd.
All sorts of advice out there but different things seem to work for different people.
I take 500mgs paracetamol together with 100mgs ibuprofen ( half a tablet) which at the moment seems to work but the effect only lasts around 4 hours.
Paracetamol isn’t an anti inflammatory - ibuprofen is. No one seems to know what the cause is. xw
I went off Besremi for a bit and it did not make a difference with my painful toes, etc. My platelets are around 625-650, so maybe that is contributing. I elevate my feet and that seems to help. I take 5mg of Jakafi 2x daily along with Besremi so hoping platelets will come down. Jakafi for itching.
I’m on 10mgs jakafi twice a day which seems to be the norm. Might have to take 20 twice a day. My platelets are a bit high at 1200 but to be honest I m not worried and neither is my haemo. ….all will be well in the end and if all isn’t well it isn’t the end…..My mantra! X
Hi Loubprv, Erthromelagia is my only persistent symptom of ET. It in the toes of my right foot. It has improved as my counts have normalized, but still bothers me at times. I have found that a topical NSAID, Diclofenac, takes care of it.
Do you have pain in your coccyx?
No. Bone pain is fairly common though in PV.
Why?
I have no idea I m afraid, I m neither doctor nor expert. Have you asked your haematologist?
Hi Louise
after suffering for years which I now think related to my rising platelets I was put on allopurinol which helped but only for 1 month which I was told was protocol..when starting Hydroxycarbamide
I assumed it helped as that is also treatment for gout . I also developed fungal foot and toe infection getting worse as platelets rose ? which made me lose nails and deform those remaining . I was for years on diclofenac which also helped but I had to stop that when commenced on clopidogrel and Hydroxycarbamide . I am though now on 4 th month of systemic anti fungal Turbinafine 250 and the redness itching and nail deformity is so improved the heat also gone from my feet .so sleeping has improved.
My feet look like they did 10 years ago I still have lots of joint aches and pains I have Sjogrens and some kind of inflammatory arthritic conditions since my teens . and to who ever mentioned coccyx pain mine is in the ischial tuberosity ie the bottom bones you sit on … so I take memory foam cushion to cope with that very little analgesic helps though ice pack do or TENs machine
I hope this is helpful because the discomfort from these conditions can drive you mad and the sitting with feet in a bowl of cold water or bicarbonate of soda though soothing isn’t a transportable option or night time solution I tried cold gel socks to but woke in the night feeling that they were now too tight to cope with probably as they also warmed up .
Good luck
L
Hi
That’s really interesting thanks.
After being on interferon for 3 months (eventually had a ghastly reaction to that) my platelets have gone up from normal to 1200.
I m not worried and neither is my haemo - I m now on Ruxolitininb and know that eventually with a fair wind my platelets will come down.
Thinking therefore that the sudden deterioration in the erythromelagia may well be related to high platelets……
Have made a note of all the meds you mention and will bear in mind.
Thanks so much x
No idea
Hi sorry to hear about your pain. I too have a terrible pain in my thumb and arms from time to time. Could I ask how you got diagnosed? I think I may have this. Thank you
Heather
Hi Heather. My haematologist - very experienced - diagnosed it.
I had a photo of very very red balks of feet and toes.
Could be a side effect of MPNs I was told. I found 500gm and 100gm ( half a tablet) ibuprofen taken together usually eased it in 30 mins.
I have (had) quite high platelets (1200)
The redness and pain seems to have lessened - I m now on ruxolitinib and wondering if my platelets have reduced .
Fingers crossed!! Louise x.
Thank you Louise. I do not get redness just severe pain. Unfortunately my body does not tolerate aspirin (or hydroxy )so I probably can't take ibuprofen either. ( long boring story) My platelets aren't particularly high but have a feeling that on the days that I get the pain, is a day that they may fluctuate. Glad that your pain has improved.
Take care
Heather
Hi Heather
If you Google erythromelalgia iit should give you irfo. Suggest you ask your haematologist
x
Thank you, I will have a look on google. I don't find my haematologist that helpful, I don't often speak to the same person. X
Oh dear. That’s not good. Have you thought about jumping ship and finding a hospital with an Mpn specialist? I did
HiUnfortunately there are none close to me. The nearest is London and that is too far for me and Prof Harrison who I saw before referred me back to my local. I think she's pretty much oversubscribed.
X
Possibly not an ET symptom but thought I would ask :)
Red skin impression shoulders 
You have to laugh!
Tingling Toes
