PV and burning Feet

[Rheanick]

Hello everyone, am new here and joined this forum to keep abreast with the latest MPN news as my husband was diagnosed with PV since Nov 2016 aged 49 at the time.

He complained of severe burning feet and visited the hospital to check on it and the immediate response from the doctor was to check his diabetes levels which was rather high at the time (he was on Diabetes meds at the time).

His CBC showed rather high levels of RBC and HCT and HGB with a ruddy complexion and the doctor suspected PV and got him tested for JAK2 which was positive.

He was advised phlebotomy and aspirin which continues todate. However his WBC seems to be rising slowly and it is today at 18,000. Many doc’s have suggested HU which I do not agree for at this stage.

Over these 3 years he has been through all kinds of symptoms from headaches, body pain, loss of appetite, lethargy, mood swings, nausea. He has visited numerous docs ranging from cardiologists, endocrinologists, neurologists, hematologists, oncologists, acupuncturist, physiologists to help with his burning feet but till date he still suffers from the same. Some days it’s mild and on other days it’s impossible to handle.

Besides suggesting antidepressant and anti seizure drugs, all doctors state his burning feet is due to nerve damage from diabetes although three nerve conduction tests he did are all normal.

Do any of you have this symptom of burning feet which I feel should be attributed to his PV alto the hemo and other docs disagree with me.

He has started with curcumin since one month so still to see it’s effects and he uses lidocaine ointment to help with the burning feet which does not really help.

Would like feedback from the forum about burning feet symptoms in PV and how do they cope with it.

Any info would be helpful.

Thank you for your time to read my long post.

[bordeauxgirl]

I too had the burning feet part of PV not long after diagnosis, I tried many different reliefs but the only thing that helped was at night was to wrap my feet in cold damp flannels place a towel under them and have my feet uncovered at night, now I know it sounds bazaar but eventually it did work and now I find although my body is very warm at night I do wear bed socks because my feet are cold and I always find them on the floor in the morning. Try this method it might just help your husband too. Best wishes.

[Rheanick in reply to bordeauxgirl]

Thank you for the suggestion. Will give this a try, Although my husband did try wearing socks at night, it didn’t really help. Besides the pain usually starts to set in towards late afternoon.

[cabinetmaker]

Hi,

I’ve not long been diagnosed with an MPN and my haematologist believes I have PV, although this is yet to be confirmed. I went to my GP a couple of times about pains in my feet and hands, ranging from mild tingling to intense burning and frostbite sensations that would vary in duration, but never really went away completely. I also had intense headaches, one of which lasted best part of 6 months. They sent me for 2 nerve conductivity test, both normal. I now have little doubt it’s something to do with my MPN, although I haven’t heard an explanation for it as yet. I’ll be very interested to know what other members of this group have to say about it.

Wishing you and your husband all the best.

[Rheanick in reply to cabinetmaker]

Thank you for replying. I too am interested in knowing what other members in this group have to say. My husband has been suffering with this for over 3 years now and we are frustrated that we haven’t been able to resolve this.

[francesb]

Hi, my consultant, a MPN specialist, told me this is

nhs.uk/conditions/erythrome...

I had it very bad at first but it’s calmed down a lot now maybe due to taking hydroxycarbamide and 75mg aspirin daily. Good luck.

[MPort]

I have PV and suffer intermittently from burning feet so I appreciate the helpful link that francesb gave above. I think being on medication to keep counts in range may help me. MpNs have symptoms or side effects that affect different people differently. I suspect it is down to the degree of misfunction in the genes that caused the MPN is the first place. I read there is a lot of research being done at the gene level so hopefully in the future the results will provide some solutions.

Mairead

[Kabuki]

After years of telling my doctors about my hands, feet and face burning I was diagnosed with Erythromelalgia by my neurologist as a secondary to polycythemia. I wish I could say that being diagnosed made it better but to be honest nothing really worked as they were constantly burning, they have slightly improved since I have changed to myelofibrosis and I stopped taking interferon, I am now taking ruxolitinib not sure which is helping. Hopefully your husband can get some relief x

nhs.uk/conditions/erythrome...

[Loubprv Volunteer]

Hi Rheanick,

Try googling erythromelalgia and Polycythemia.

There’s quite a lot of info on the net.

I would suggest you find a consultant specialising in MPNs and ask if this might be your husband’s problem.

This is such a weird cancer isn’t it? Some people have loads of side effects and others none. I hope you find a soluton and a bit of help at least...

Run of the mill haematologists might not be so aufait with erythromelalgia ( I don’t suffer from it by the way) and othe rconsultsnts might be too quick to

blame diabetes. Don’t be fobbed off.

Good luck.

Love

Louise

x

[jillydabrat]

Hiya luv,

I was sent from one specialist to another with my burning feet and then I was diagnosed with PV. I had two venesections then Hydroxy. Immediately after starting hydroxy the numbness and burning in my feet was reduced by about 90%. I was diagnosed at the age of 54 and I am so glad I started the medication. There are some annoying side effects but you can't tell what is from the drugs and what is from the illness. Worth a try because I hated the feelings in my feet. Hope this helps a little.

[Jpop]

I was diagnosed with ET a couple of years ago at age 44. It started with a six week long headache that finally went away with aspirin and that’s when my family dr sent me to a hematologist suspecting I had an MPN. I tested positive for Jak2. About a year later I started having burning feet and then both burning hands and feet. Hematologist said it wasn’t related to ET. I was sent to a neurologist who didn’t detect anything but based on my symptoms suggested I had small fibre neuropathy probably a secondary from ET. For that kinda of nerve damage she would have to do a more in-depth procedure to confirm. I took her word. Hematologist still doesn’t think it’s related. Before this I went a year with not being able to fall asleep until after midnight because the burning agitated me too much. I tried different sleeping remedies. After being diagnosed with small fibre neuropathy my family dr put me on Gabapentin and I am finally able to go to bed and fall asleep when it’s bedtime. I have had to increase to 600mg now because at lower dose I started feeling it again. Getting my sleep is critical! I also take aspirin for the ET.

Hope this helps,

Julie

[wormwood in reply to Jpop]

I'm also on Gabapentin due to extreme nerve pain in my left leg after a clipped disc.... it also helps with my restless leg problem. I use a cold water bottle when my feet burn, it helps xx

[Angela621]

I am not doubting your diagnosis related to the burning feet symptoms but it doesn’t make sense that such a sensation couldn’t be related to your ET. This is because the micro circulation at the capillary level is compromised with high platelets. When that occurs, tingling or paraesthesia could easily manifest. You might want to try Salus red beet crystals or l -arginine. These promote increased nitric oxide production at the capillary level which promotes increased circulation. All the best to you!

[Jpop in reply to Angela621]

That sounds right, an understandable explanation. I just don’t understand why my hematologist thinks it’s not related?!

I’ll check out the two remedies you mentioned. Thank you

[Mazcd Partner MPNVoice in reply to Jpop]

Hi Jpop, I am sorry to hear that your husband is suffering from this problem with his feet, I hope that the advice you have been given will help and that he gets some relief. I would just advise though that before taking any supplements as suggested by Angela, that he checks with his haematologist or nurse specialist that the supplement is ok for him to take. Kind regards, Maz

[plum27]

I have JAK2/ET, diagnosed a few years ago and no indication of diabetes, but I have had "hot" feet for several years now (since before my ET diagnosis) and the past few years I am losing sensation in my middle toes and a feeling of slight pressure or puffiness where my socks would be, particularly when my feet are feeling "hot". I had very low B12 a year ago but B12 injection and supplements have brought that back up. Neural conduction study was normal. Neurologists are unwilling to investigate further. Otherwise, my symptoms sound much like your husband. When my feet are "hot", nothing else works other than cooling them, which is easy in winter but not so easy in summer.

[MPNJoe]

I have the exact same symptoms with my PV. The burning feet are the worst but I do have body aches like my bones are hurting. My oncologist for some reason dosnt understand it