Leg Pain With ET & PV

[Mustang50]

Hi everybody how many of you get leg pain with ET & PV I’ve been told by haematologist it’s nothing to do with it and go back to GP, sometimes it feels in the knee joints other times in the shins and more to do with circulation 🤷‍♀️

[Trueblue8]

Hi, I would guess that your Haematologist is not a MPN specialist! I have ET JAK2 pos and get bad lower leg pain in my feet and ankle joints, particularly after periods of inactivity. I've been told that it is a side effect of MPNs and I've also read this online.I'm in the process of trying to get my care transferred to the RD&E in Exeter, where there is a specialist, as I'm not happy with the current level of care that I'm receiving.

I hope this helps.

Ian

[Mustang50 in reply to Trueblue8]

Thanks for helpful reply, I’m also considering specialist help, I can be on legs working all day but as soon as I stop or like you say after periods of inactivity they play up 🙈good luck with a specialist!

[Uzza in reply to Trueblue8]

Hi, I get the same. Mostly feet and fingers.

cheers,

Uz

[Mandy-moo74]

Hi Mustang50Yes I do I get it regularly, it feels deep inside my bones and just nags away can be actually quite sore and takes my attention away from what I am doing had it for quite some time now I for sure think it is linked to ET

[Mustang50 in reply to Mandy-moo74]

Me too !

[Windy51 in reply to Mandy-moo74]

Me too

[Dillyv50]

Hi, yes, I certainly do. I recently had an mri on my pelvis to rule out damage and it was clear. I'm trying to undergo a process of elimination. My GP referred me to orthopedics as they also dont think it's ET associated. The pain is as you described but also shooting, stabbing pains. I'm convinced it's ET.

[Mustang50 in reply to Dillyv50]

I do too!

[ladyanello]

Very likely the inflammation caused by our diseases although unlikely in the knee, according to my primary care. He thought is was stress brought about by the way my walk changed when I was in pain - so far, he has been proven correct. I very mindfully watch the way I'm walking when hurting and try to adjust to more normal - takes a lot of concentration at first and you feel silly but has been really effective.

[Mustang50 in reply to ladyanello]

Thanks for advice!

[Conneryfan]

Absolutely. Tends to be lower legs and I do think ET related as so many people in forums have it. Worse when trying to rest, and very bad when trying to sleep.

[Mustang50 in reply to Conneryfan]

Totally the same here!

[Runner999]

I have Peripheral Arterial Disease and have an 8cm stent in my femoral artery. My ET was noticed from rising platelets on follow up Well Woman tests. I am glad it was that way around and that my difficulties in walking were not blamed on my ET !

Since then I have had issues with my calves - solved by leg strengthening exercises from my physio.

Regular walking, stretches and exercises are my solution.

Partly age related too - if you don't use it, you lose it!

[Mustang50 in reply to Runner999]

Thanks so much for the reply nice to know there are things we can do to help with the right advice!

[Hidden in reply to Mustang50]

I actually bought from Amazon a massager that massages my feet, calves & thighs. It’s rather odd looking & doesn’t really massage. It squeezes your legs & feet. Has done wonders for the circulation in my legs. Hospitals use them at times if you have had surgery & are unable to walk.

[Mustang50 in reply to Hidden]

Thanks for reply would do anything to help starting to feel I’ve become such a bore for my partner, family & friends as I’m either asleep with the fatigue or in pain! 🙈

[Hidden in reply to Mustang50]

I totally understand. My platelets were always over a million & I think between the fatigue & leg pain, depression was the worst. I started on COQ10 which I read here helped a lot with the fatigue & the leg massager. & trying to walk more & got me a exercise bike. It’s a bit depressing to be told you have a disease but we don’t know the cause & there’s no cure. I figure either I will lay here & let it bring me down to useless or be proactive & do what I can to make it better. Don’t give up . A Drs word is not the final say. God bless!

[Mustang50 in reply to Hidden]

Bless thanks so much truly helpful!

[hunter5582]

While it could be unrelated, as you see from the number of answers from other MPNers, this sort of symptom is very common with MPNs. MPNs are at the core inflammatory disorders. We experience many different type of problems due to this. We also can experience circulation related issues that can cause pain. It sounds like it is time to consult with a MPN Specialist rather than a regular hematologist. Many docs simple do not have the KSAs to provide optimal MPN care. Here is a list. mpnforum.com/list-hem./

Here is just one example of how a MPN can be associated with what you describe. "Gout and kidney stone associated with polycythemia vera occur due to the high turnover of red blood cells, which results in higher-than-normal uric acid production. Polycythemia vera may eventually “burn out” so that scar tissue replaces the marrow and the disorder resembles idiopathic myelofibrosis." rarediseases.org/rare-disea....

FYI - I also experience pain in knees and other joints. It is related to systemic inflammation. Also possible related to the PV (see above). I have had some success controlling the systemic inflammation/osteoarthritis with Curcumin and several other agents (not NSAIDs). The good news is that there is something you can do about the symptoms if you work with a doc who understands what is going on.

All the best

[Mustang50 in reply to hunter5582]

Thanks so much as always great advice hunter!

[IrishSarah in reply to hunter5582]

Hunter how did you figure out effective dosing for Curcumin? Am I correct in remembering that you’re also on aspirin, and if so have you adjusted your aspirin dosage at all to allow for curcumin?

I’ve got a call with my haemo tomorrow and would love to understand how others are incorporating curcumin into their treatment before I talk to hear about potentially using it myself.

Thanks!

Sarah 💚

[hunter5582 in reply to IrishSarah]

I just looked it up. You will see various versions of "max dose." Some will express in in terms of dose:body weight. This study is one of the better sources I found. ncbi.nlm.nih.gov/pmc/articl...

I am currently taking 550mg 2x/day = 1100mg/day. I titrated up until I reached a dose that seems to be effective. 1200mg/day seems to be a pretty common recommendation. The above references study indicates that up to 2100mg/day were well tolerated. I would caution that all formulations are not the same. Some are metabolized better than others. Also note that curcumin is blood thinning and does potentiate aspirin to some degree, though not as much as other agents like fish oil.

The aspirin was making me prone to hemorrhage too much before I started taking curcumin. The curcumin did not seem to make a big difference, but aging did. It got worse over time. My MPN specialist took me off aspirin for the same reason that the American Heart Association no longer recommends it for people over age 60. Too much risk of hemorrhage. That had been happening to me (too much bleeding/bruising). Then I developed a hemorrhagic brain tumor, Discontinuing aspirin was the right choice for me. I would NOT advocate it is the right choice for everyone over age 60. It needs to an assessment made based on each person's MPN profile.

Hope that helps.

[IrishSarah in reply to hunter5582]

That’s really helpful. Thanks a million 🙏🏻

[Cja1956]

Hi, there. Last week I developed excruciating leg pain and lower back. I couldn’t even walk. I had all kinds of tests, CAT scans, ultrasound and X-rays, and they didn’t find anything. I also thought it was bone pain from my MF so I went to my hematologist and she did some lab work and my platelets were over 1 million, which were the highest they’ve ever been. But she also told me I should get an MRI which I did, and they found that I had a herniated disc and that three of my vertebrae are involved. So I’m off to an orthopedic specialist next week, to get treatment. Good luck to you.

Cindy

[Mustang50]

Thanks for advice!