Thank You for your replies

[Rose_59]

Thanks to all of you who replied to my recent Post regarding PV and Leg Pain/Weakness.

I'm sorry to hear that you too experience Leg pain. My sense is that my discomfort is related to PV and If I find an improvement, I will of course be in touch with you all. I was diagnosed in 2004 and have been experiencing it for as long. I am going to monitor it more closely and see if it eases after Venesections or with more rest etc., I'll keep you posted. In the meantime , I hope you find ease from you discomfort.

Every good wish, Rose

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Tico

Tico

8 days ago

Hi rose, i don't get the leg weakness but certainly experience terrible leg pain,predominantly in the thigh bones. I have tried all heat rubs going & painkillers but nothing seems to bring long term relief, i have to grin & bear it until it eases on it's own.let me know if you find anything that helps you.atb tina🤗

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redumbrella

redumbrella

8 days ago

Hi Rose,

I was diagnosed with PV jak2 neg 13 years ago I am on daily Aspirin and have 4 ro 5 venesections annually.

I do not have the leg weakness but do suffer from leg pain especially at night. It an fatigue are my worst symptons. When I mentioned the leg pain to my Haemo 6 or 7 years ago she refered me to a Rheumatologist who in turn diagnosed Polymyalgia" PMR "and said it would burn itself out in a couple of years and put me on Steroids, the Steroids helped somewhat but after some years I came off them on the advice of my GP.The leg pain increased again and I am now on a very low dose of daily Steroids .5 of an mg.

It was only on joining this Forum a few months ago that I realised that the Bone pain came with PV. As there is no sign of the so called PMR burning itself out I have come to the conclusion that it is totally down to PV related Bone Pain. Like yourself it has impacted greatly on my life as I used to walk a lot and now find myself unable to do nearly as much.

I don't know Rose from your post how long you have being suffering your leg pain but after 7 years or so my own has in no way diminished.

As MPN'ers we face many challenges which are not understood by other people. We just have to work through these as best we can and this forum where we all understand what each of us is going through is invaluable.

Keep the faith Rose, look after yourself and most importantly be kind to yourself x

Garry

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Bluetop

Bluetop

7 days ago

I'm also PV and currently on 10x500 hydroxy/week. I have been taking hydroxy for about 2and a half years now and my leg ache started when I started on hydroxy. My ache is mainly down my shin bones. However, since I increased my water consumption to 2-3 litres a day, it is generally much better. Good luck.

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