Tingling Toes

[JeniMac]

Hi hope you are all well. I have been diagnosed with Pre Myelofibrosis from having ET for 13 years. I am waiting to start Pegylated Interferon in October. For the last few weeks I have moved had tingling Toes nad and my 2 big toes are painful. Is this symptoms will it improve on its own. Some days it is really painful

[hunter5582]

This symptom is a classic MPN microvascular issue. It likely will not resolve on its own. I was off aspirin when I experienced. It stopped the day I restarted aspirin, even at 40.5mg/day. It has not come back to bother me. Do note that some people find that they need 2 low-dose aspirin/day to find symptom relief.

Be sure to consult with your MPN Specialist about this symptom. It is important for your care team to be aware of it.

[JeniMac in reply to hunter5582]

Thank You. I have stopped Aspirin maybe I need to restart it. Will mention when I go to see my haemotoligist.

[hunter5582 in reply to JeniMac]

That would be a definite agenda item if you have d/c-ed the aspirin. I had stopped at the advice of a MPN Specialist. Due to age > 60 + thrombocytosis I was experiencing excessive bleeding/bruising. When the tingling/burning pain in the toes started up, I restarted the aspirin immediately. I did not wait for an appointment. I contacted my MPN Care Team immediately. Did not need an appointment to make this decision.

All the best and no pain!

[Jamesxyz in reply to hunter5582]

40.5, R u cutting the baby aspirin half?

Is that hard to do?

[hunter5582 in reply to Jamesxyz]

I used a chewable aspirin when I did that. It would not work the same with an enteric aspirin.

[JenngeetingR828]

hi JeniMac - that is a symptom I get as well when I am not taking my baby aspirin. I take 2 a day and that helps- per my dr.

[JeniMac in reply to JenngeetingR828]

Thanks I have took 1 this morning see if it helps

[Mazcd Partner MPNVoice in reply to JeniMac]

Hi JeniMac, sorry to hear that you have painful, tingling toes, it might be best to see your GP about this and also get some advice from your haematologist or haematology nurse specialist, particularly about the aspirin, if you were advised to stop taking it you will need to check before re-starting. Best wishes, Maz

[Pwatson in reply to JenngeetingR828]

Hi therei would definitely try and get back on the aspirin. I have the same MF as you (post ET) andi also have Raynaud's so my toes do suffer in winter. Aspirin seems to have madea difference

[JeniMac in reply to Pwatson]

Thanks everyone I am going to ring my GP see if I can go back on Aspirin Thanks for everyones support

[Booagain]

I think the tingling is a really important symptom perhaps not recognised by some GPs.

My feet (not just toes) used to tingle so badly I had to walk on my heels or the sides of my feet (not easy in trainers, impossible in high heels!).

Two GPs on separate occasions looked at my feet, asked a few questions and dismissed the issue.

A third GP, after I had amassed several other symptoms one night, gave me a very thorough check up and a blood test. Four days later a nurse phoned in the afternoon to say blood test fine. But that evening another GP phoned to say I had ET, Jak 2. He talked about platelets. I had no idea what he was talking about (made frantic notes)! He ended saying I was being fast tracked to the hospital.

And so began my diagnosed ET experience (2016).

Let's spread the word on tingling feet.

[JeniMac]

I have spoken to my GP who literally said I would have to wait for call back so rang my haemotoligy nurse. She said to take 1 baby Aspirin each morning will speak with my haemotoligist to let her know and if any other issues to ring. I don't like to ring as they are busy and I feel I'm wasting their time. But will see how the Aspirin goes Thank you everyone for your support I love this site

[Alfiesarah]

Hi

I am also a 64 year old female and also have tingling..not just toes but both feet and hands. I also have a number of other symptoms including dizziness, fatigue, itchy skin and nausea. Unfortunately, my Haematology consultant refuses point blank to acknowledge there are any symptoms relating to my condition..I have ET and Jak2 positive..diagnosed October 2021, platelets at 565 now and on 1 HU per day plus 1 baby aspirin. I struggled for a few months with awful HU side effects as was on 2 per day for a period when platelets were 820. I hope you have more joy in being believed about your ET symptoms particularlythe tingling....I have given up!

[Sewingtime in reply to Alfiesarah]

Gosh, so sorry to hear this, maybe time to try a new hematologist? Helen

[JeniMac in reply to Alfiesarah]

I have had my diagnosis changed I had ET for 14 years. It has now progressed to Pre Myelofibrosis. I'm lucky I have an amazing haemo team behind me. I changed about 1 year ago as felt I was getting no joy from old team. Hope you get sorted

[Rockstone in reply to Alfiesarah]

too suffer the same symptoms as you. I have been in 1000 hydroxycarbamide for a while now even though my platelets ate down to 420. The tingling is so annoying. I do not have a very good appetite either. Do you?

[JeniMac in reply to Rockstone]

. My appetite is OK. I have started taken Aspirin and it is helping. My medication is changing from Anagralide to Pegylated Interferon. Hope you are coping

[Wyebird]

so sorry to hear of your progression.

I have ET but I started Peg as soon as it was agreed. I was weaned off anagrelide first then took just Hydroxicarbomide and Peg eventually just Peg.

Why do you have to wait until October?

[JeniMac in reply to Wyebird]

my next appointment is October. This is when I start peg. Can I ask how you are doing on it

[Wyebird]

love it. Responding g extremely well. I was on 9 anagrelide and 17 Hydroxicarbomide a week.

Started 90 peg a week the 10 days

11 days, 14 days now just starting every 21 days.

Wish I’d started it years ago.

Don’t understand the delaying in starting for you.

I only have ET.

I really hope it suits you.

[JeniMac in reply to Wyebird]

I have to have a heart scan and MRI before she will start me. I have my first one on 3rd October running alongside Anagralide. I am glad your coping well gives me a little reassurance. Hope it works for me fingers crossed.

[Wyebird]

ah I understand now. No isn’t need those. Although my heart was checked before I started anagrelide.

From what I can gather most people are really good on Peg. As I said though I’m Calr ET.

Good luck, Keep me posted

[JeniMac in reply to Wyebird]

I was ET Jak 2 now I'm Pre MF Jak 2. Hopefully this will work thanks for replies

[MNGIRL2019]

I’m sorry that your doctor hasn’t acknowledged your symptoms. They are very real and very much related. I’m JAK2 + ET positive and I get severe burning all over my body if I sit (or stand) too long/certain positions. Have you heard of erythromelalgia? If not, I suggest googling it.

[JeniMac]

Thank you. Will check it out. Hope you are well