Is foot/toe pain a symptom of increasing platelets in ET?

Posted by mumblipeg @mumblipeg, Sep 10 9:22am

I've been on HU since March 2025 (5 days of 500 mg/day each week) and my platelets have dropped from 1200 to 314, so I'm relieved tjat it's working! I have a JAK2 mutation, along with ASXL1 and TET2 mutations. So I'm continually aware of possible progression. Initially, I experienced jabbing pain in my toes, so bad that it was debilitating. My platelets were very high at that time. Now, today, the pain is coming back after being absent for months as my platelets lowered. Is anyone else feeling foot pain- burning especially in toes and discomfort while trying to sleep? I'm concerned that my platelets are rising again. I'm trying to get on a lower dose of HU since I have lost a lot of hair, have bone pain and I;m so tired. This foot pain is worrying me.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

docheat72 | @docheat72 | Oct 12 12:46pm

In reply to @christina3444 "@mumblipeg If your doctor is not giving you some solid reasons for his opinion about staying..." + (show)

@christina3444 I am on Promacta to stimulate red blood cell and platelet production for a week now. I will post tomorrow when I get test results.

nohrt4me (Jean) | @nohrt4me | Oct 13 6:55am

In reply to @mumblipeg "Thanks for your input. The bone pain, toe/foot pain isn’t in my head, but does go..." + (show)

@mumblipeg Did you ever get an answer on the foot/toe pain? I looked back on the responses and didn't see if you were able to follow up with your doc. These specialists are often so backed up on appts and frazzled when you do get in that I'd rather grit and grin until my reg looky loo.

docheat72 | @docheat72 | Oct 13 6:40pm

In reply to @docheat72 "@christina3444 I am on Promacta to stimulate red blood cell and platelet production for a week..." + (show)

@docheat72
Platelets up 20%
Red blood cells up 10%
Promacta really works well

nohrt4me (Jean) | @nohrt4me | Oct 14 6:49am

In reply to @docheat72 "@docheat72 Platelets up 20% Red blood cells up 10% Promacta really works well" + (show)

@docheat72 All of us here with ET have the opposite problem with platelets--too many. Do you have ET that has moved to MF? Glad your Promacta works for you if your platelets are too low.

docheat72 | @docheat72 | Oct 14 10:25am

In reply to @nohrt4me "@docheat72 All of us here with ET have the opposite problem with platelets--too many. Do you..." + (show)

@nohrt4me I was as low as 14k a few times.

1250dunbar | @1250dunbar | Oct 16 8:48am

I have foot pain that started in one good foot stopped then it started in the other bad foot. I say bad foot because I had severe leg clotting in pregnancy, ages ago. The pain is in the aches of my foot. For me, it seems a tightness and massaging helps. When I walk it hurts but after while it gets better. Its on and off. Although I feel the tightness in that foot all the time. I am able to forget about it most of the time. Use to bother me when trying to sleep but if I moved position, it helped.

View More View Less

Please sign in or register to post a reply.