PV and Sore legs

At the moment lm on no meds except warfrin and indepamide. My consultant stopped Peg Interferon l must say it was a releif. Side effects are still a problem in particular restless legs. Soreness through the day and in particular at night so lm not getting to much sleep. My Gp prescribed nitrazepam and they do give me some deeper sleep,however the burning pain/infldamation in my legs has gotten worse. As l have said before my Gp practice is unfamiliar with myloproliferative neoplasm and is rather reluctant in their approach to treatments. I'm feeling up in the air right now and have lost confidence in advocating for myself. I will see my Consultant in 3 weeks and hopefully 🙏 feel confident again in my treatment.All thoughys welcome

Your MPN friend Adiewon

[hunter5582]

Which type of leg pain are you experiencing? There is a list of things we can experience due to the MPN and/or medication side effects. Erythromelalgia, arthralgia, myalgia, edema, peripheral neuropathy, paresthesia, etc. There are also causes such as Restless Leg Syndrome. The latter can be caused by a number of different things, including medication side effects and some nutritional deficiencies.

I have experienced some erythromelalgia (that my doc called PV-Toes). Aspirin eliminated this symptom. I also experienced rather painful leg cramps when I was sleeping. Turned out I was magnesium deficient. Magnesium supplement solved this problem. It would be very simple to start with some basic nutritional testing (e.g, magnesium, iron). Knowing your nutritional status is a good idea anyway. When we did my analysis, it turned out I was deficient in Vit. D, vit B/folate, and magnesium.

Please do re-empower yourself to advocate as needed to address the current leg pain. Your body is telling you something needs to be addressed. This is an issue that needs input from various members of your treatment team. If the PEG-holiday does not resolve the symptom, perhaps it is being caused by something else. The MPN Specialist on your care team should be able to help sort this out. Hope your upcoming consult goes well and you find the cause and relief.

[Hidden in reply to hunter5582]

Thanks Hunter l think it might be worthwhile finding out my nutritional status l will look into this again. As to the cause of painful legs this is more of a process right now, it is being monitored by my consultant and lm grateful for this.Thank you MPN friend

Adiewon

[william-Indo]

For inflamation, you could give a try of curcumin.Vitamin B1 and magnesium may help for restless leg and pain and melatonin could help for better sleep.

Pls consult to your doc before taking all supplements

Wish you are fine.

[socrates_8]

Hey Adiewon2...

I have also been a long time sufferer of RLS, ( & sleep deprivation), has long been a major occurrence in my life.

Recently, I have reluctantly commenced taking Melotonin, (as William mentions below).

In the very first instance; one tablet - Nil affect, Two tablets - same... Ten (10) tablets slow growing improvement, and after which I now have a build up of Melontin in my system, & just two (2) tablets in the early evening are now helping me attain some triumph in the sleep department...

"Naturally, I am NOT recommending you follow my lead, borne out of mental anguish & sleep deprived torment..."

Best follow your medical team's advice...

However, my legs continue to ache... Just underwent an U/Sound on both legs, just to be sure that I was not suffering from blood clots & potentially DVT(?)

However, no clots detected at all...

I am well aware that I was afflicted with RLS, (& Sleep deprivation), for many years prior to my Dx in 2016...

None, seem able to provide me w/ anything concrete on why this is taking place at all...

In my view, it would appear that is a part of my Post ET/ MF symptom burden...

One of my most hated complications too...

Hopefully, you'll soon find an answer for your complaint shortly...

Best wishes

Steve

[Hidden in reply to socrates_8]

Hi Socrates it means such a lot when others relate from their own experience so thanks for that . It feels like not much to do right now except tough it out. From my experience the effects of my PV change all of the time right now lm on strong meds for sleep thank heaven. Your reply has given me food for thought and hope.Adiewon

[Looolooo]

Repeated venesections over 2 years prior to going onto Peg caused restless leg, and arms! Once in Peg I was allowed a course of iron tablets. Stopped restless limbs, hair loss, breathlessness on inclines and majority of fatigue. I also think I read somewhere that being iron deficient can cause restless legs. Perhaps mention to your consultant?

[Hidden in reply to Looolooo]

Hey Looooolooo so helpful dear one will check out my iron although l think he said it was ok last time.Checking Venus sections might also be a clue to my leg issues l feel they may be less restless but more painful.Anyway thanks buddy

Adiewon