I have a tingling and burning on my left sole for a month, I am taking hydroxyurea 3 times aweek, and aspirin, for ET. Ιnteresting to see other people's experiences on that. Should I contact my doctor sooner? Platelets are 330.
All the best, Anastasia.
I get the same, itchy feet, peeling skin and pains in the soles for no apparent reason. Drives me mad when I'm driving! I need to take off my shoes and socks and hope... Hydroxurea? I don't take aspirin now.
Hi lucieboo, what you call hydoxicarbamide in Greece comes under the name of Hydroxurea.
Thank you for replay.
May I ask why you are not taking aspirin any longer?
All keep safe.
Because I developed atrial fib, now treated with catheter ablation, but I still have to take a different blood thinner, called Eliquis (Apixaban) to prevent strokes. It is good, but I tend to bleed a lot if I cut myself. It doesn't cause the bruising I used to get with Aspirin.
Me too, tingling in all my toes. Feels like they are numb as well, who knows what this is all about, maybe our blood just not circulating.
Hello bordeauxgirl,
I don't think this is a matter of circulation, because I didn't have this a month ago..
At the moment it doesn't bother me that much but in the future?
Stay safe!
Hi I have same tingling in my feet I take Hydroxycarbamide and clopidogrel, just recently it has started on my right shoulder and down right arm, I'm speaking to consultant in a few weeks I'll mention it.
Linda
en.m.wikipedia.org/wiki/Ery...
I used to get this all the time but not so often now. Never used to get the swelling though. My hands burn as well, particularly when it's warm or under bedsheets.
I am on the same treatment. I used to get dreadful irritation of my feet. I am sure you should contact your doctor, may be a side effect and they can offer something to relieve this very unpleasant symptom. Hope you can get some help.
A deficiency of thiamine (vitamin B1) can cause tingling. Thiamine requires enzymes from magnesium to function so a deficiency of magnesium can be caused from several reasons, Please search on "krispin magnesium" for a list and further magnesium information.
It is hard to say with what you describe. Definitely talk to the doctor about is as soon as you can. It may or may not be related to the ET and/or your hydroxyurea. Here are a few terms to know for when you talk to your doctor.
"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."
"NEUROPATHY is damage or dysfunction of one or more nerves that typically results in numbness, tingling, muscle weakness and pain in the affected area. Neuropathies frequently start in your hands and feet, but other parts of your body can be affected too."
HU SIDE EFFECTS ON SKIN - "Dermatological side effects of hydroxyurea use are xerosis (dry skin), hyperpigmentation, brown-nail discoloration, stomatitis (mouth ulcer), erythema (reddening of skin), scaling of the skin and cutaneous ulcerations (skin ulcer). Ulcers from hydroxyurea use are characterized as painful, fibrotic and persistent with trophic, periulcerative skin."
Your doctor will need to sort through the possibilities to determine what you are experiencing. Many people with MPNs report paresthesia. I used to get it until my PV was more under control. Peripheral neuropathy would likely be unrelated to the MPN as far as I know. The more serious thing to consider is whether this is HU related adverse effects. If you are developing skin ulceration, particularly at such a low dose of HU, this would be a very serious sign of HU toxicity. If that is what is going on your treatment would need to be changed. I am NOT saying that is what is going on. I have no way to know that. Just be aware that HU toxicity is serious and needs to be ruled out.
Hope that helps. Please let us know how it all turns out.
Yes I will let know. It is a problem to make an appointment with doctors because of coronavirus, and we are not allowed to go other parts of the town exept where we live, and hospitals are downtown, plus we are not allowed near the hospitals anyway and is Easter holiday until next week to topped all of.
The problem is my big toe of my left foot that feels like the skin is burning, I am very skeptical because 6 months ago when visited the professor I was taking HU
3 times a week plus salospir 100mg every day , He told me to take salospir 3 times a week only.
Well to my oppinion, blood flow was restricted in the tiny blood vessels
due to the thick
blood , and there is where the Paresthesia and "pins and needles" started....
I am looking for an other doctor. (My palms look kind of red too) PLT also up from 288 to 327.
I wish you all suny weekend .
Anastasia.
The difference in your platelet levels is not significant. It will always go up and down. At your current levels, you should not have any thickening of the blood (hyperviscosity) from your platelets. 450 is the top of the normal range for platelets. What are your erythrocyte levels (red blood cells) looking like? Leukocytes (white blood cells)? Do you have any other signs of hyperviscosity like hypertension?
The reddening of your palms could be a side effect of the hydroxyurea, and may be related to what you are experiencing in your foot/toe. It is impossible to tell if that is true without you going to see a doctor who really does know how to treat MPNs and is familiar with the side effects of hydroxyurea.
There is just no way to know yet what is causing the problem. Do be very alert for signs of skin ulcers as that is quite serious. This could be related to the MPN/hydroxyurea or it could be something else. I hope you can get to see the doctor soon. Perhaps you can do a tele-video appointment. I am doing almost all of my appointments that way now.
Hang in there my friend!
red blood cells 4.3
white blood cells 6241
hypertension well controlled with medicine.
looking for a MPNs specialist.
at the moment focus on the positive site!
I wish you joy and happiness my friend.
Anastasia.
Red blood cells (RBC) normal range is 3.93 - 6.08. 4.3 is within normal limits.
White blood cells (WBC) normal range is 3.98 - 10.01, If what you are referring to is WBC at 14.8, then that would be leukocytosis. While there is some variation in the normal limits between different labs, I think a WBC at 14.8 would be considered high most anywhere.
I know we may have a communication gap here, but if you are in leukocytosis that needs to be addressed in your treatment. Your platelets seem to be well controlled; however, leukocytosis is a significant risk factor for thrombosis (clotting). In some ways, it is more risky than thrombocytosis alone.
You definitely need to follow up on this with a MPN specialist. I have no idea if you really are in leukocytosis, but if you are - with the JAK2 mutation - I would wonder if you actually have Polycythemia Vera or one of the MPNs that do not fit neatly into the standard definitions. Leukocytosis can also be an indication of some form of infection your body is trying to fight. I have no idea what is really what is going on, but I would certainly try to find out.
I think finding a hematologist with more knowledge about Myeloproliferative Neoplasms is very important at this point. You have serious concerns that need to be properly addressed. I am not a doctor and am not qualified to tell you what is going on. I am just another MPNer just like you. If I was in your situation, I would do whatever it takes to see a MPN specialist as soon as possible.
You likely have some time to get this sorted out, but please get your issues addressed as soon as you can. Please remember that assertive patients receive higher quality care. Passive patients do not. You will likely have to push to get your questions answered and receive the quality of care you deserve.
All the best to you. Stay well and safe.
sorry I was rong WBC 6241.
How correct you are saying (remember that assertive patients receive higher quality care. Passive patients do not.)No more passive BEHAVIOUR.
Have a nice day and thank you very much.
Did you mean WBC = 6.241? or 6-point-something? That would be in the normal range.
I was looking around at some information on HU and saw more references to the tingling in the foot that you describe as a side effect. If this is something that did not start until after you started HU, I would be most suspicious that it is a side effect. You really do need to find a MPN-expert doc to consult with. I did not find any listed on the site I usually look at. mpnforum.com/list-hem./
I did find this list of names on a piece of research based out the Second Department of Internal Medicine, Evangelismos Hospital, Athens, Greece.
Economopoulos T1, Economidou J, Papageorgiou E, Dervenoulas J, Christodoulides C, Pappa V, Karakassis D, Terzoglou C, Athanassiadou S, Chalevelakis G,
ncbi.nlm.nih.gov/pubmed/291...
Perhaps this would be a place to start. Even if none of these is a practicing physician, perhaps the Department would be able to refer you to one.
No matter what - do be assertive in managing your medical care. You will get much better results.
I have a relative that is a doctor , and She is trying to get me an appointment with doctor Papa after Easter. All these doctors that you mention are on Coronavirus Research Groups and Medical Centers and Hospitals in Greece.Veeeery busy!!!
But will try.
Beautiful. Thank you 🙏🏾 for your reply and your interest, and the time you spent on my case. I let you know.
Anastasia.
WBC 6.241
I expect all of these docs are VERY busy right now. I am doing almost all of my appointments by tele-video. I am having to defer the surgery for the bone tumor on my jaw until things settle down.
Please do let me know how it goes. I am delighted to be able to help another MPNer. We benefit helping each other. People on this forum have really helped me too. We are truly stronger together.
Sending nothing but Good luck on you surgery.
One of the symptoms of ET can be burning pain in feet and hands.i had increasingly bad pain and burning pains in my left big toe and side of foot for most of last year.. These symptoms also affected my right foot and hands but to a much lesser degree. My Gp thought it was caused by arthritis and referred me to an osteo surgeon. The osteo said level of pain I was experiancing did not tally with level of arthritis in my foot (mri scan) and described my foot pain as asymptomatic even though I could not walk or stand on it for any length of time without pain. I prescribed a cortisone injection and checks for rheumotois arthritis (negative). Cortisone instead of easing my pain caused me severe pain for over two weeks and ultimatly no difference otherwise to my overall foot problem.
A couple of months before my foot pain began my gp also began to monitor my bloods. I had gone to her due to ongoing and uncharacteristic fatigue and light headedness. After 9 months she referred me to haemotologist due to my platelet levels remain above normal. I was diagnosed with ET (jak and calr negative) in February by haemotologist and put on 75mg aspirin daily. The pain is gone other than some tingling early morning. I am now back walking a 5km loop most days and as a result my fatigue is less due to being able to walk and the fresh air. The nurse specialist told me at diagnosis the asprin should ease my foot symptoms and most happily for me she was right. I am due for review with haemotology in August of bone marrow Cytogenetics, and bloods results for FBC, LDH and biochemistry . Not sure if these are standard or more investigations. I am hoping they are standard.
Otherwise I am staying safe, managing my symptoms much better and acclimatising myself to having a chronic condition.
All the best and stay safe 😊
Thank you Woodlandgarden, your saying is very interesting, you went through a lot before you where diagnosed with ET ,and taking aspirin....
Even in the hardest of times, we have things to be grateful for.
All the best to you.
Anastasia.
ET and Left sided headache.
Tingling and pins and needles
sugar and tingling with ET
Myelofibrosis and tingling limbs
dull ache under left shoulder blade 
