Hi everyone, I thought this place would be a good place to ask as it's a wealth of knowledge 😊 and it might be ET related or not. I have never experienced this before. Yesterday evening at home most of my toes on my left foot suddenly felt very itchy and red and a bit swollen. They are also tender at the top of my toes. I did not know what to do so I put Hydrocortisone on with Cansten and took an antihistamine. My toes aren't as bad today but sti a bit swollen and tender in trainers. Also I feel it very very slight on the toes on my other foot but honestly minimal. Can I please ask hax this ever happened to anyone here. I am ET Jak 2 , female, 47 and diagnosed 3 years ago. On asprin only platlettes at 589 at the moment. Thanks in advance for any ideas as to what this strange thing is.
Possibly not an ET symptom but thought I would a... - MPN Voice
Possibly not an ET symptom but thought I would ask :)
Chilblains?
Was going to say if you were on Hu. It could have been gout as that is a side effect of hu bu would not be a bad idea to get your GP to rule it outStay safe
Seasons greetings
Scottish terrier
Yes maybe I should say to my GP. Will see how it is in the morning. Thank you for advice!
As it happens, I did have problems with my toes about twelve years ago when I had ET, also JAK2. It started with one toe feeling hot, itchy and sore. My GP thought it was a chilblain, but over the next few years I had a series of nasty infections on different toes. At their worst, I had pus coming out from under the toenail and it was extremely painful. My GP was stumped, as was my haematologist. Antibiotics didn't help and when my haematologist tried taking me off Hydroxycarbamide for two weeks it made no difference. My feet and ankles also swelled up badly, so that my stretched skin kept pulling at my toes. Overall I was in a pretty bad way.In desperation I bought a book about water retention and one of the the suggestions was giving up wheat. I tried it and amazingly, within two weeks, my feet were a normal size and the current infection had started to heal! I also lost a shed load of weight!
Strangely, I can now eat wheat with no ill effects, and I am, because I am trying to regain the weight I lost having my SCT. But I wouldn't hesitate to give it up again.
This is probably far too much information but I do suggest that you keep an eye on your toes and feet - I wouldn't wish my experience on anyone!
Jennie
Hi Jenni, how are you doing? I've been following your journey and have been hoping that it is an easy a ride as I can be during and after your SCT. Thanks for your telling me about your experience. I am currently Gluten Free. Have been since ET diagnosis but your experience makes me wonder if gluten has sneaked its way into my diet in some way. So this definitely something I should consider. It's just so strange. Not so bad today ( I think) but I'm currently in work so can't check until later. I hope what happened to u doesn't occur. Jeez even from the perspective I need to be able to get around for my daughter. I will see how it goes overnight tonight. Thanks again. B
I found it was cold weather . My little toe was purple . Now platelets down this year my feet are normal.Maybe try soaking feet in hot water with a bit of mustard powder . Have kettle near to keep topping up water . For about 15 mins
Or rosemary oil is good .
If continues send photo to GP or make appointment.
I have had the burning pain, swelling, redness in toes and feet that is associated with PV. It can also occur with ET. If that is what this is, then know that it is a microvascular symptom not a dermal issue. Fortunately, it responds well to an appropriate dose of aspirin.
It is impossible for us to say whether what you experienced is a MPN microvascular symptom or something entirely different. Be sure to consult with your care team to have this properly assessed. Note that some hematologists are not aware of the many different ways a MPN can manifest. Hopefully you have a MPN Specialist on your care team.
Please do let us know what you learn and how you get on.
Hi,
I've noticed that you have mentioned microvascular issues several times. Is there any online references to this? Is this clotting caused by abnormal platelets? How much aspirin are you talking about? Thanks.
People with MPNs can have microvascular issues other than thrombosis (clotting) or hemorrhage. Microvascular symptoms include headache, vertigo, tinnitus, dizziness, erythromelalgia (burning pain in feet/toes).
For people with PV, hyperviscosity is part of the issue. There is also evidence in the literature that the JAk2 mutation may make blood cells "extra-sticky." The symptoms people with MPNs experience are not just about how many there are but about how the blood cells behave.
Here are a few references
ashpublications.org/blood/a...
Fortunately, there are medications that can help. For many, the proper level of aspirin helps with microvascular symptoms.
Well I'm no Dr.. but I perused your first reference. This paper is very technical and delves into the mechanism of trombosis. It in no way discusses what we are talking about here. It's ok to have an opinion here, but it needs to be stated as such. Thanks.
You are right that none(?) of us on this site are medical doctors, and everyone asking for input from this board should always keep that in mind. That said, sharing the information that we learned from our personal experience, and especially scholarly papers, is exactly what helps many of us. We should also keep in mind that the advice we receive from our own physicians is not always appropriate for everyone, and may not even be correct.
Hunter has helped a great many of us on this board, and I do not recall a single time when he gave advice that should be reserved for a patient's MPN specialist. His stock in trade is "see an MPN specialist" and "advocate for yourself."
We are all in this together and want to support each other as best we can.
Wishing you nothing but the best on your journey and happy holidays!
Your note made me curious on the 1st report. It's actually right on the point of "why do we have certain troubles". The report is indeed quite detailed, they needed to explain their new way of investigation. But the summaries are good.
The "sticky" Hunter refers was measured in this study, what the RBCs stick to is our Endothelial cells ".. a single cell layer that lines all blood vessels and regulates exchanges between the bloodstream and the surrounding tissues". PV red cells stuck near 4X more than healthy ones, sounds bad. And they found " Lu/BCAM proteins... in PV RBCs, appear to cause this enhanced adhesion by binding to laminin α5 present on the endothelial cells."
So it's directed to a novel possible cause of thrombosis, which is a subject of this thread. They found a specific source of this newly discovered behavior (ca 2007) and thus a possible remedy someday. Any recent follow up would be interesting.
Well I would certainly agree that the research area in this pape ris interesting.
However the paper states clearly
"Patients with polycythemia vera (PV) have a JAK2 (a cytosolic tyrosine kinase) mutation and an increased risk of vascular thrombosis related to red blood cell (RBC) mass and platelet activation."
"The number of patients investigated in the present study does not allow us to determine whether or not Lu/BCAM overexpression and/or phosphorylation is an index of thrombotic risk in patients with PV, but JAK2 617V>F mutation has been reported as a risk factor for thrombosis."
The symptoms described in the original post may or may not even be related to an underlying MPN.
Just think it's risky to suggest taking more aspirin is appropriate.
In the 2nd report in your note (Hunter's) is this plot. It's part of the big picture of the study but at least in isolation another reason to consider NAC supp.
I think it's in context of "Disturbed endothelial NO pathway and increased oxidative stress status" with NAC reducing the negative effects of this Jak2 allele aspect.
A comment they make on NAC: "The normalization of vascular reactivity induced by NAC could be explained by the glutathione inducer activity of NAC, but could also just be due to the potent antioxidant activity of this drug." They seem to state that NAC has two different beneficial routes, gluth and a separate antioxidant.
This is off the subject as raised in a post here, but discoveries are made this way.
Hello
Yes, I have had this twice now with numb toes and feeling of walking on rocks or stones and coincidentally it’s happened both times after contracting covid .. it took a few weeks to settle down
Hope this helps
SammieLou, When did you have Covid and how did your body respond?
Hi EmeraldA,I do not live in a cold country and I am having a problem with my right foot. I am ET (in remission) and started having this slight pain and stiffness under the toes. I visited my GP and she has sent me to see an Orthopedic doctor but I feel it has something to do with my ET. My appointment is January 4th, 2023. It has since gotten worst in the last 2 days. My big toe is swollen and painful and my second toe is shifting to my big toe. I am in severe pain and afraid to apply any thing to it. I even wondered if it was a clot. I am concern because I feel it is becoming infected. I am paying attention to the swelling and might just go to the ER. Hope you have gotten some relief.
I did in that it went away after two days. I took an antihistamine. used cortisone and restarted NAC. I wil just have to see if it happens again. Of course it would great if it didn't as it would stop me running for sure. It was swollen, not painful just tender and very itchy at first.
Hi Esmeralda, definitely yes it is a symptom of ET, and or MF, platelets related, my wife had for years, these "chilblains" which were a bit more bearable with aspirin, not knowing she had MF with high platelet count. Since being on Hydroxycarbamide and Anagrelide her platelets are controlled and she doesn't get the painful red and purple toes.
I had similar a few years ago (I have triple-neg ET, am on aspirin only, age 40) and my haematology team thought it may be related to Erythomelalgia which can be a side effect of ET. They advised to double my aspirin dose, and it has relieved the symptoms. The weather/temp changes can also affect. Would recommended you speak to your haematology team and see what they advise.
This was one of my first symptoms, quite a bit before anyone realised how high my platelets were (around 1000!).
Heat seems to be my enemy but, owing to severe osteoarthritis, I need to keep my feet warm. Juggle, juggle. On Hydrea since June 2021 and feet still a painful area but less swollen itchy toes.
Find washing feet and applying moisturiser regularly helpful.
Thank you I found this interesting. Sorry to hear u have severe osteoarthritis as well that is a juggle with ET.
covid toe is another possibility
Hi, EmeraldA. I had an appointment with my MPN specialist today and we discussed a very similar issue I have in my fingers. Before I was diagnosed with an MPN, I was diagnosed with Raynaud's disease and my MPN opined that it might actually be a manifestation of erythromelalgia. She said they are very similar and related to spasms in the tiny blood vessels. Sounds a lot like the "microvascular" system Hunter mentioned. She told me that I should adjust my aspirin up if needed to control this issue because, in addition to its other benefits, aspirin promotes the release of nitrous oxide which opens the small vessels. My original MPN specialist also recommended that I titrate up my aspirin to help with my finger issues.
My preferred technique for dealing with this issue is to keep my fingers warm. I risk looking like a dork by wearing gloves at times that make others wonder... :-).
Good luck to you!
Hi everyone, thank you for all your advice and ideas as to whether this is ET related or not. It lasted 2 days and then the swelling, itchiness and tenderness went. I was very glad of this it was uncomfortable wearing shoes. I had stopped my NAC and Tumeric and and another supplement I take so that might have had some impact. Erythomelalgia is also new to me as was covid toe. I luckily havent had covid since May. My mum and sister have Rynautes so maybe there is something in that. I will mention it at my next appointment. Thanks again for a the fab advice. 
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