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

Sounds a little like gout. You might check that out because it can be treated. I think gout more often linked to PV, but don’t let that stop you from checking it out. I think it is an autoimmune disorder and MPNs are associated with higher levels of inflammation in general, so who knows. It is very painful and responds to medication and some dietary modifications.

As far as symptoms go, I am always baffled. HU has reduced my platelets pretty quickly. Still a bit above normal but I feel better. Some symptoms finally improved, but now I have some I did not have when my platelets were higher. Maybe these will improve or disappear too with more time and further lowering of platelets-who knows? You had a great response with hydrea, so you might want to lobby for some reduction even with the new symptoms because they may be caused by some other effect than platelet count. Anyway, good luck.

Thanks for responding and for your ideas! No swelling, so gout seems unlikely but I have had that before. Cramps seems to go along with this new foot pain and tingling, I’ll keep on…maybe just HU.

I had bone pain in big toes 3 years before being diagnosed with ET Jak2. I've been on HU for almost 5 years now platelets in normal range, still have bone pain in big toes and down my shins. Can't take NSAIDS because of ET, and tylenol does very little to relieve. The pain is mostly in bed at night and sometimes wakes me from sleep. Also voltaren doesn't do much. I'd love to find a good pain reliever

For the hair loss, I was losing it in clumps but that stopped soon after I started taking Essential Amino Acids, 1 per day, and my hair grew back in, albeit a little fuzzy. I use Doublewood brand. For the toe pain, I had that when my platelets were very high, and I put some arnica gel on the areas that hurt. The gel quickly stopped the pain. I use Arniflora brand, but there are people who use Arnicare which seems to work just as well. I’m taking HU and I’ve noticed that if my platelets get too far above 400, the toe pain returns, but Arniflora stops that.

As for the bone pain, I don’t think that my bones hurt, but my hand tendons and upper leg muscles/tendons can hurt really bad. I’ve been trying various things, and more recently started taking Devil’s Claw root, which is an herb that focuses on chronic pain relief. It is helping the pain a lot, not 100%, but I can function normally now. I use Nature’s Way Devil’s Claw Root, 2 in the morning, and 2 in the evening.
I’ve been on HU since February 2024.
Maybe some of these things will help you.

Yes, HU messes with a lot of things in our bodies, but we take it because it’s lifesaving for us. As for the cramps, HU depletes magnesium in the body which was causing me to have cramps in my calves and feet. To counteract that, I use Liquid Magnesium, NOW brand, 1/2 t. daily in a little water. You can experiment with how much you need.
Another thing I’ll mention in case you start having a problem with it. I didn’t get mouth sores for a long time, but then started getting them, just one at a time. Chemo is known to cause mouth sores. Someone said they were using a zinc mouthwash which stopped the sores. I opted for a zinc lozenge, and no more sores when used once or twice daily. (I use Zand Lemon Zinc from Vitacost (online). HU messes with the mucous membranes throughout our bodies, in the sinuses, mouth, stomach, intestines, etc. I take certain supplements to help with nausea and vomiting from HU.

Hello friends! I suffer with pain in many joints ! Degenerative disc, shoulders, hips , sometimes big toe , I take an anti
Inflammatory medication every day , it works , I know because when I forget to take this , the pain wakes me up durning sleep time !
The medication is MELOXICAM I TAKE 15 mgs ! I told my hem/onco
And cardiologist that I can not stop taking this because I need it to make my pain tolerable so I can function!!
CAN NOT LIVE WITHOUT IT! I learned that chronic pain makes life miserable!!
So speak with your doctors and ask about an anti inflammatory medicine
Good luck ! I must take it daily!! Bless you all Anna

When pain mgmt Dr rx'd meloxicam, my oncologist said NO. At this point I don't remember why, he just said no. I'm on HU and baby aspirin for almost 5 years now. Now my bone pain is in bones, not joints or muscles. My leg shins ache at night in bed, also toes between joints (but not joints)

I found this, meloxicam is a NSAID. And generally no nsaids with HU (an anti-platelet med). Blood thinners are medications that treat and prevent unwanted blood clots. They include anticoagulant and antiplatelet medications. Meloxicam isn’t considered a blood thinner, but it can make it harder for your blood to clot. Combining meloxicam with blood thinners can raise your risk of bleeding.

I have foot and leg cramps too and some pain in one toe. I have been told that toe joint is arthritic, but it flares from time to time. All this stuff is better for me after treatment. I think some issues are related to poor blood flow to feet and lower legs. I use massage to loosen the fascia in lower legs and keep feet and ankles mobile. I also do exercises with my feet to keep them mobile and reduce numbness. It is a battle. Best of luck to find a solution.

Has anyone took Tramadol? The reason I ask is I am on HU and Eliquis I had a tooth pulled and they gave me Tramadol. Also I don't take a 81 aspirin because of the Eliquis.