Tracking my symptoms for my MPN specialist to review on next visit, and the frequent itching/burning sensation I have is on the list. It’s completely localised to the top of my feet, running from toes to ankles, and seems to be aggravated at night when I get into bed, and when I’m warm.
Does this sound like ET related pruritus? Seems odd that it’s so localised and not a full body thing.
Grateful for any insight, as always!
Sarah
Ps: In awe of you guys who really suffer with pruritus as a symptom, absolute troopers!
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Hi Sarah, funny you should mention feet as I was just going to blog about mine which I think maybe exacerbated by long term hydroxy. I have a definite muscle foot weakness. Walking poles and Ted stockings help the floppy feet. Circulation issues are likely so I elevate them whenever which stops the ache. I am 76 so to be expected. How is your circulation?
When I first started on Hydroxy I came out in a rash all down my lower half. Do you have spots?
Hi Michael, nothing as difficult as you’re experiencing, just an uncomfortable burning/itchy sensation. I’ve read that hydroxy can cause skin irritation, and had gotten the impression that pruritus was more of a PV symptom. I’m ETJak2+, only taking aspirin and platelet count is (relatively) low so was curious if it was more common/less extreme than I’d thought 🤔
Hi Sarah, I'm getting the same hot/burning sensation on the bottom of my feet, from toes to heel. Only been on hydrea for 4 weeks. As new to this process find all info very interesting.
Did you get connected to a MPN specialist via your gp. I'm just with a haematologist at the moment.
Because I have a history of thrombosis I was previously a patient of the National coagulation centre here in Ireland. I had quite a direct route to my MPN specialist, I contacted the NCC after a bout of covid and what seemed to be residual haem symptoms and having reviewed my blood panel they referred me to Oncology haematology. My first appointment was with an MPN specialist who delivered the surprise ET diagnosis!
It’s been very reassuring to know I’m in experienced hands. I’d echo the sentiment repeated by lots on this forum, it’s worth getting linked in with a specialist if you can
Hi I am facing same problem since 2 years Dr is not other about it and just ignoring my questions.
I become totally inactive in my life still go don't refer to any specialist for every symptoms asking to take panadol , and blood test they are giving is standard routine test and they put this symptoms under diabetic neuropathy which I don't believe as I feel I have blood circulation problem but my reports bhagani have been tempos because of past medical negligence due to which I face ongoing shortness of breath and diagnosed as pulmonary embolism of highest rate it in 3 month my Dr up removed me from blood thinking medication but I had never seen lungs specialist or blood circulati o.oon specialist for my problem when I read I find my drs are not treating well new drs don't take case and old drs are not interested in investigation so blindly I try herbs related to my symptoms some herbs act on me like life saver but due to vivid 19 I remain unable to find this herbs and now I am feeling II am dying without treatment and lose hope from life worst part is I have got all the symptoms of covid 19 severe cough, dizzy, throat pain, headache running nose running eyes fever night seating but covid test came negative and here condition becoming more and more severe, Dr on the phone said go to hospital hospital people said not emergency case go to your up and suddenly up refuse to talk to me about test he gave to me and refused to see me , went to 2nd Dr in same dispensary he said he want to do full medical assessment and booked me for assessment, and when on the day of booking I went receptionist told me u don't have appointment they were knowing clearly that in have transport problem still they denied but I show them appointment card opposite to public they feel embrassed so they called me in office and told me if we has f IIinish for day come an on that day than Dr came and told me he never ask for health assessment and I started crying why this people are behaving like this 3 medical clinic I changed they will be very good in first meeting but than they will change completely after wards and will not bother to treat me I ask god why me what wrong I did so that this people are treating me like that? When u raise your concern against unethical practice they will start torture u indirectly and finally u left practice and finally this torture left me without treatment and diagnosis and today in spite of so many health problem my children accused me of I am lazy don't want to do work so all the time talking about sickness as drs had fill their mind with negative points to hide their wrong doings I don't know where to get help as my phone my house everything is under their radar my email, my phone, or my post even don't teaching to relative person I post to.I am 69 years old tired worn out depressed and facing such problems.
Paresthesia refers to a burning or prickling sensation that is usually felt in the hands, arms, legs, or feet, but can also occur in other parts of the body. The sensation, which happens without warning, is usually painless and described as tingling or numbness, skin crawling, or itching.
Pruritus or itch is defined as an unpleasant sensation of the skin that provokes the urge to scratch. It is a characteristic feature of many skin diseases and an unusual sign of some systemic diseases. 1, 2. Pruritus may be localized or generalized and can occur as an acute or chronic condition. (note pruritis can appear in patches).
Signs and symptoms of peripheral neuropathy might include: Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms. Sharp, jabbing, throbbing or burning pain. Extreme sensitivity to touch.
You will find reports from others that paresthesia can be experienced with MPNs. It can be difficult to sort out what is the MPN, what is a med side effect, and what is something unrelated. Any of these things is possible. It sounds like you are taking the right approach. Keep track of what is happening. Describe the sensations and when they happen accurately. With MPNs, pruritis is often aquagenic pruritis (occurs after warm shower/bath). The trigger is a sudden change in temperature.
I'm recently diagnosed with thrombocytosis. For the past couple of years I've been having terrible itching, small blister-like bumps which turn into tiny craters - almost anywhere on my body. Only recently did a dermatologic P.A. do a blood test that led to where I am. This is the only symptom I have and it continues even on 1000 units of hydroxy with no adverse affects. I have been receiving treatment for pernicious anemia for many, many years which is simply a B-12 injection monthly. I'm wondering if this is the kind of itching that I've read about. First time on this site and am a bit overwhelmed. Otherwise in good health, feel better than when I was 20 years younger, peaceful and little stress. Any comments appreciated. I've tried every lotion, creme, talc, including OTC and rx.
There are so many type of skin lesions that it is really hard to say what it could be. Unfortunately the JAK2 and other MPN driver diagnoses do more than cause thrombocytosis. An increase in inflammatory cytokines is also frequently seen with MPNs. At the core, all of the MPNs are inflammatory disorders. The secondary inflammation related symptoms are sometimes more bothersome than the increased hematopoiesis.
I have a host of issues with systemic inflammation that includes eczema. Controlling the eczema has similarity to other skin conditions. The thigs that help me are mostly prevention oriented. I avoid scented/dyed laundry detergents and fabric softeners. I do not use regular body soaps and opt for ceramide-based cleansers. Very important is that I maintain a healthy skin moisture barrier using a ceramide-based cream on affected areas. These interventions have also eliminated the eczema outbreaks. If eczema does start to flair, I treat with Eucrisa (a PDE4 inhibitor). It works great! Eucrisa also works for other skin conditions.
I hope you have arranged to see a MPN-Specialist. Most docs, even hematologists, do not have the KSAs to treat MPNs optimally. Here is a link just in case you have not seen one yet. mpnforum.com/list-hem./ . Do be aware that iron deficiency can increase thrombocytosis. Given your hx of anemia, a more thorough evaluation by a MPN Specialist is particularly important.
Note: hydroxyurea will likely do nothing for the skin issues. It does not work that way. HU decreases hematapoiesis by interfering with DNA activity of hemapoietic stem cells. It also interferes with DNA in other cells in the body (which is why it can cause problems). There are other meds that are much more likely to help with both the thombocytosis and the skin issues, specifically Ruxolitinib. You did not mention whether you are JAK2 positive. That is an important thing to know. it should have been part of your initial MPN assessment.
Thank you ever so much. I do have the JAK2 mutation (lab says 8.9% which means nothing to me???). I'm seeing the only hematologist/oncologist in town and have a good feeling about him. He's associated with MDAnderson, answers all my questions and, finally, someone listens to my itching concerns which I believe are related to ET. I've learned we have to be our own best advocate and be persistent. My persistence finally led to me the diagnoses, even though it took a long time. I'm trying to be an informed patient and this website is going to be a great help. Thank you hunter 5582.
MD Anderson is where there is significant MPN expertise. You likely have a good match in docs.
That is great that you have already had your JAK2 Mutant Allele Burden assessed. 8.9% is relatively low. People with ET tend to have the lowest allele burden, people with MF the highest, people with PV somewhere in the middle. Broadly speaking, people with an allele burden of less than 50% tend to have a milder expression of the MPN. That is very broadly speaking. There is not a straight linear relationship between allele burden and symptom burden (or disease progression), but there is a relationship. Less is better. There is plenty of research on this topic. It does not all agree. The emerging consensus is that it does matter. Many docs are not up to date on this and do not know with to do with the information. I expect your doc does know what this means, which is why he ordered it.
I would suggest going back to this doc with some more questions about the implications of the JAK2 mutation beyond thrombocytosis. I think you are 100% correct in thinking the itching is MPN related. There also really are interventions that will help.
Here is a really great presentation of the role of inflammation in MPNs. There is lots more out there on this topic.
My doctor is a fellow at Anderson and an MRCP/MRCPath. I feel very comfortable with his credentials. Thank you so very much for the video. I will go back and watch more times I'm sure. This is something I probably would not have come across. I am so impressed with the men/women who are in the research field and have an interested in something so complex. It will take me some time to digest all the terms and grasp a good understanding of this new event in my life, but I have a curious mind and am just fascinated with all this new information. In retrospect, I find it curious that the itching began right after a 2-week hospitalization for a respiratory condition and a blazing yeast infection down the upper part of the back of my legs. Somewhere in these last couple years, I simply lost interest in red meat for no particular reason, lost a lot of weight and other unplanned changes in my life style. So, my overall health has greatly improved. I did do some searching on the possible effects of pernicious anemia on MPNs and there have been studies, but no apparent relation. I've been getting the B12 for at least 40 years, very faithfully. My current doctor has stressed that it's important that I continue, which, after 40 years, goes without saying. Anyway, I ramble...... You are providing me wonderful pathways for furthering my knowledge and I very much appreciate your taking the time.
Sarah, you didn't mention any medications. A large percentage of the population are deficient in magnesium. Many diagnosed with ET are prescribed Hydrea which causes loss of magnesium leading to a vitamin B1 (thiamine) deficiency as it needs magnesium to change it to it's active form. Thiamine deficiency has been linked to fatigue, loss of appetite and impaired cognition and peripheral neuropathy. Search on "krispin magnesium" and "mgwater" which are two magnesium informational web sites. Krispin lists other causes of magnesium deficiency in addition to the daily amounts and well absorbed forms. Also look into "nothing boring about boron" for It's many benefits. Research each of the B vitamins as they work better together. Benfotiamine is a fat soluable form that the body converts to thiamine offering longer activity. The link below expands on thiamin. Investigate liposomal vitamin C to inhibit bruising and purpura especially if you are using aspirin as aspirin causes faster loss of vitamin C and liposomal curcumin, to address itching. Benzene, toluene and formaldehyde are implicated as MPN causes. Check products you are using for their content or in their use. For example paraffin candles when burned give of benzene and toluene. When sodium benzonate comes in contact with ascorbic acid benzene is created. Always consult your health professional before using any supplement.
Hi Sarah, I am one of the gang who have this distressing condition along with PV. I have had this rash from the off, I have been in a UVB LIGHT BOX, the local dermatologist hasn't a clue on how to clear it. I have been given all the creams and ointments on the market to no avail. The itching is horrendous. But also the rash associated with it, just like mini bubble wrap. Now there is a different rash on my feet ,at the instep place. Again no help given or found until I scanned the internet and found a cream which has given a slight relief. Good luck in your search with a cure. June.
Hello again , the cream that is giving me some relief is called Gladskin,it was developed in Switzerland but distributed from The Netherlands and I must warn quite expensive, About £27 for a 30mil tube. but I must say it spreads very well. You can find it on the internet, best wishes and I hope it gives you some relief. June.
hi sarah, i have a very itchy back...i keep on scratching it...i have ET and drink anegrelide in AM and hydroxyurea in PM...and since the itchy is ij my back, i never put any cream...i just never thought it is related to ET
Hi. I have something like that-itchy spots on my arms. I take a bath, use moisturizer/lotion and sometimes use anti-itch cream. It’s odd that it happens mostly at night before bed; it’s like that for me too.
Yes. Sometimes I see bumps and other times it’s just a pinkish color. I actually saw a dermatologist and got some prescription anti-itch cream. It helps a little. It is mostly at night, and always on the inside of my arms. If I scratch it, it can result in hives. So, I try not to scratch it. I’m Learning to deal with it.
Hi Sarah, I am ET triple negative. I had pruritus and terrible trouble with my feet for the year preceeding my diagnosis. I started on asprin in late February following my diagnosis. I feel this has helped to reduce my symtoms. I also began to moisturise my legs and feet a few times a week which I think alleviated the severity of the itching. May be just the massaging effect or reduction in dry skin but whatever it is Pruritus has eased off gradually over the past few months.
This time last year I could walk maximum 10/15 minutes due to severe pain and burning sensations developing whenever I walked or stood for any length of time. I had no redness or obvious symptoms until blood tests revealed platelet problem. My feet still have burning sensation but it is manageable and I walk at least 3 km a day, (depending on my fatigue level) Similar to your experiance, heat made mine worse, often woke up with welts on my tighs after itching them in my sleep. Thankfully, this is no longer happening 😊. Ps I live in Offaly
Hi Sarah .like you I have Pruritus quite badly on my legs , started when diagnosed with PV about 6 years ago, my Dermatologist hasn't a clue as to what causes it ,he just shrugs his shoulders and with hand outstretched says 'well I don't know what causes it' as I live in the Channel Islands I don't have much chance of seeing another doctor. I did 'respectfully' ask for a second opinion in England, to which he agreed to immediately , I thought that was easy!! But then he said he ran the clinic at the hospital he was sending me to. Despair set in... but I went , 12 'doctors came into the room, looked, prodded and went, answer to the problem was wrap your legs in cling film every night after applying the ointments. I realised it was a teaching hospital and the 'docs' were all students, an absolute waste of time. I have tried every known cream ,ointment on the market to no avail. I was about to try and get a private appointment in London, but now Covid19 has scuppered that for the foreseeable future. So to all our fellow MPN'ers chin up, stop scratching and keep smiling. Healthy days to you all . BTW my G.G.grannie came from Birr, County.O. you might even be a cuz. lol.
Hi Bordeauxgirl, just read your post 😊. I live in North Offaly but I know Birr well, it's a lovely town. if you are ever tempted to look up your roots, it will be well worth the visit. Just to update you on itch.; My GP has prescribed NeoClarityn to me every Spring/Summer for the three years due to seasonal rhinitis. I started easing off my daily tablet a few weeks ago ,but the itching suddenly returned. After discussing the return of this particular symptom with my GP she decided to leave me on Neoclarytin and itch has disappeared again . That said, I try to vary my intake between every second day and then daily if I feel it coming back. Hope this info may be of some use for you.
Good Morning Woodlandgarden, Love your tag , I can just picture you out dancing amongst the flowers and tree's. lol. I would dearly love to visit Ireland as a whole, but hubby can't walk much now 'heart troubles'.
Anyway thanks for your reply, I don't know if I said, but I have had PV with the Pruritis from day one six years , I have been given every known ointment, pill, treatment in the hospital UVB light box, even had a skin biopsy. I don't really notice any affects from the PV but the 'itch' came with as huge challenge, feels almost like a scald from too much really hot water, I call my 'bubble wrap' rash . Little red lumps on my legs that cover the whole of my shins and ankles which has almost driven me insane. The slightest touch of clothing will set it off, nothing has worked and the Dermatologist just shrugs his shoulders and says 'well, I don't know what it is'. No help or hope from him then. The Haematologists same thing, except they fly over to Guernsey to see us ,but due to lockdown they haven't been over since last October. Two weeks ago I put aside my doubts and visited our little 'Alternative Health' Shop and bought a tin of Hemp ointment. Within ONE week half the rash has gone and I am confident the rest will follow suit. It almost stops the itch but calms it down so I don't really notice it. My son's say 'we told you it would help'. It is truly a miracle. I could almost wear a skirt (if it wasn't so windy) Now just wait and watch this space as I have an appointment to see the Dermatologist in November.Ready to pay him another huge wad of money to shrug his shoulders at me again. Very best wishes to you ans thanks again for writing, June x
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