Pain-top of foot

[Cokopops]

Could pain on top of my foot be due to hydroxy? Feels like someone hammering nails in my foot! Get tingling feeling and then sharp pain.. can hardly walk Has anyone experienced this? Thank you

[Aime]

Hi, I have very painful feet at the moment but I’m not on meds relating to my blood condition. I also have osteoarthritis in other areas. If it’s something new, it’s always better to get checked by gp, as it’s easy to blame everything on our blood problems. Hope you get relief soon as I know it’s not pleasant as unfortunately you have to use your feet a lot! Take care, every sympathy, Aime 😻

[Cokopops in reply to Aime]

Thank you for your reply Aime. It hadn’t crossed my mind that my sore feet could be related to hydroxy, but a neighbour that had breast cancer told me she experienced the same when she was on chemo. She told me it was common for people on chemo to experience peripheral neuropathy, I have arthritis all over so perhaps it’s that.. I’ll speak to my haematologist next week and mention it. All the best x

[Hidden]

This is a known side effect of Hydroxycarbamide; I have been on it for years and have had itchy lower legs for some time, but lately am developing intermittent fiery pain on the tops of my feet and also pins and needles and numbness in my forearms. I think this can all be ascribed to peripheral neuropathy though if the foot thing gets worse with redness that seems to be described as erythromalalgia. I also have had to treat some actinic keratosis that is another side effect. Fortunately all of these are mild and intermittent so I just keep taking the capsules and life goes on. I hope your symptoms stay mild....

[Wyebird in reply to Hidden]

Does it all infringe on your quality of life it sounds awful

[Hidden in reply to Wyebird]

Obviously I would rather not have these symptoms but unless my haematologist comes up with an answer at next month's meeting its a case of keep taking the capsules and carry on. I'd rather put up with a few minor inconveniences and get up each day and enjoy life than not !!!!! 👍 I feel the same about my AF - falling over when my heart kept stopping was no fun but the pacemaker sorted that out and now I am in permanent AF 100% . Both conditions mean I am often tired but again - its better than the alternative.🥰

[Wyebird in reply to Hidden]

You are so positive

[hunter5582]

As other mentioned, it is a possible HU-adverse effects. However, you can also get this as a microvascular symptom associated with MPNs. Be sure to discuss this with a MPN Specialist ASAP. Note that many docs are not familiar with this sort of MPN-related issue. Best to consult with a doc with the requisite KSAs.

[Cokopops in reply to hunter5582]

Thank you for your reply. I’ll speak with my haematologist next week. It does sound like peripheral neuropathy. Discouraging! That was my good foot..the other is bad with arthritis. The joys of getting old! Kind regards

[hunter5582 in reply to Cokopops]

Hope you get it sorted out ASAP. Please do let us know what you learn.

[Cokopops in reply to hunter5582]

Will do, thank you. Stay well..ish!😉

[EleanorPV in reply to hunter5582]

Wow I spoke with my haemo about microvascular issues in my finger (very painful). He suggested being referred to a rheumatologist (on the Scottish waiting list). Can you suggest any research papers on this link with MPN’s?

[hunter5582 in reply to EleanorPV]

Many references to microvascular symptoms are embedded in the general literature on PV and the JAK2 mutation. the short version is that the JAK2 mutation can cause alteration in how the blood cells behave, Microvascular symptoms are caused by the interaction between erythrocytes and platelets with the vascular endothelium. It is a complex interaction with multiple factors. The somewhat simplified notions is that the cells become extra sticky, causing problems, The solution is to make out blood more slippery. This is exactly what aspirin does.

Here are a few articles that touch on this issue.

longdom.org/proceedings/sti...

jci.org/articles/view/124566

wjgnet.com/2218-6204/full/v...

I am not sure why the hematologist would refer you to a rheumatologist for microvascular symptoms. That is really and issue for a MPN Specialist to address. If, on the other hand, you are having issues with systemic inflammation (e.g. osteoarthritis) then a rheumatologist would make sense.

FYI - it was my rheumatologist who suggested trying Curcumin for the inflammation/osteoarthritis. One of the best pieces of advice I ever got!

I hope that helps. You have actually asked a pretty complicated question, but a very important one. The microvascular symptoms of MPNs can be quite significant and we need competent consultation to deal with it when it occurs.

All the best.

[EleanorPV in reply to hunter5582]

Amazing information. I will knock on doors again.

[Wyebird in reply to EleanorPV]

After reading Hunter’s reply stay on the waiting list but I’d consider telling your heamo

[lizzziep]

When I was on hydroxy I had this, the pain was horrendous, eventually I developed dreadful ulcers on my toes, despite various treatments from a podiatrist nothing worked, haematologist said it wasn’t hydroxy related, after months of being unable to walk due to pain I was referred to a dermatologist, who said she didn’t even have to examine me as this was a well known side effect of hydroxy, she contacted my haematologist and I was changed to Anagrelide and they started to heal as soon as the hydroxy was stopped. Of course Anagrelide has its own side effects but my feet are ok!

[Wyebird in reply to lizzziep]

Wow, unbelievable and worth noting. Glad you are ok at moment

[hunter5582 in reply to Wyebird]

Do note that vascular ulcerations are one of the most serious adverse effects of HU. They can lead to gangrene. If that is what is going on, then HU is absolutely contraindicated. It does not sound like it is what you are describing, but it is something to be aware of.

[Wyebird in reply to hunter5582]

Thank you Hunter but did you reply to me in error?

[hunter5582 in reply to Wyebird]

That was responding to lizzziep's comment about ulcerations. What is very scary is that some on the forum have reported their docs continuing the HU despite vascular ulcerations. Lizzziep was fortunate she found a doc that knew what was going on and did the right thing.

[jointpain]

Hi, Hydroxycarbamide does increase uric acid, so it could be you are suffering from gout! Ask to have your uric acid levels checked, it may mean taking allopurinol, yet another tablet!!Hope you get it sorted out soon. X

[nightshadow]

I would have intermittent sharp pain on the top of my foot long before I started HU or was diagnosed with ET. Turned out to be arthritis. An xray would be able to see if that is the issue instead of HU

[Runner999]

I had a pain on the top of my foot which I mentioned to a physio I was seeing for something else.I was given a very simple exercise which solved my problem:

Get a physio stretch band and loop it around a table, sofa, heavy chair leg.

Sit on the floor and insert foot into the loop, then pull foot towards you against the band and relax back.

Repeat in sets of 10 several times.

Do some on other side too even if not affected !

This reactivates / engages small muscles in the foot and lower leg.

(even if it does not solve your problem, it cannot do any harm!)