Pain in hip, leg down to shins, ET Jak2 prefibrotic MF

[JOL13]

Diagnosed earlier this year with ET Jak2 and Prefibrotic myelofibrosis. Have been in pain since 1st Nov - checked for DVT -nothing - Having MRI of hip on Friday.

Am on 500mg Hydrea 5 days x 1 starting 2 on Sat and I’ve been taking 2 on Sunday.

75 mg Asprin plus all other meds on top for neuropathic pain and anxiety I have had multiple spine surgeries over the last 20 plus years including two knee replacements, the spine ops have left me with a compromised nervous system.

I have started to spend every other day in bed resting and try to do things on alternate days but I can’t stand or sit for too long due to the pain hitting 10 + . My consultant confirmed today that the pain could be from the Blood cancer - as a few patients suffer with this, so he has upped the HU dose to the two on Saturdays, 9 per week in total. I hope this resolves soon. My platelets have gone done from 800’s to 461since June so the HU is doing the job, but this pain since Nov 1st is doing my head in.😱 has anyone else been suffering like this.💩💩

[hunter5582]

It is hard to sort out what is causing the pain based on the information you have. One possibility is a microvascular symptom caused by the MPN. There could be a MPN- unrelated cause, related to the knee replacements and spine surgery. If you are already experiencing neuropathic pain, this could be a progression of that issue. It is worth noting that peripheral neuropathy is a known adverse effect of hydroxyurea. That is another possibility to consider.

Your situation is complex and will require input from multiple members of a comprehensive care team. Hopefully, your team already incudes a MPN Specialist. If not, it would be a very good idea to get a second opinion at this point. mpnforum.com/list-hem./

Wishing you all the best moving forward.

[Spanelmad]

Sounds like you've irritated your sciatic nerve maybe?

[JOL13 in reply to Spanelmad]

No not sciatic - know what that feels - that would be a godsend 😆 thanks for input

[Spanelmad]

Yikes if your wishing sciatic pain!!your scores must be off the chartsWill be thinking of you for your MRI

[Wyebird]

I’m interested in your pain because I too get that. In both hips. I have it for a few days then it goes. It was so bad I described it like a red hot fist in my hip and travelling down the front of my leg. I’ve had an x ray. Physio thinks it sciatic as that term is generic.

Neurofen helps so I take it as soon as it starts.

[Carol0925]

Good Morning, have you checked Piriformis Syndrome which can be extremely painful and debilitating. Your spinal ops could have left you with scar tissue, damaged nerves etc. It could also be radiculopathy. Hope you find an answer asap. I suffer from chronic nerve pain 😔Keep us posted please.

[JOL13 in reply to Carol0925]

Hi Carol. Roll on this Friday having MRI don’t think it’s PS - I do have scar tissue on my lower stomach and confirmed adhesions. This is new and very different - the only comfort I have is lying down cradled in my adjustamatic bed. The minute I stand the pain kicks in left pelvis into hip down leg under knee and then shin the knee feels like boiling water is being poured on it with electric nerve shock…😱🥹🥹