MATEs FORUM

I have polythycaemia, I'm wondering if anyone else experiences pain, especially in the knees and leg bones particularly at night. I asked my haematologist about this, and was told polythycaemia probably isn't the cause, but then went on to say that if the symptom isn't common, then it's not counted. When I looked at the MPN Voice site, a lot of people experience this. Any thoughts/help/suggestions?

Hey & welcome to MATES Jodie...

What you mentioned about your pain, is actually something that I suffer from pretty much everyday... However, I am Post ET / MF & not PV.

What your describing might be known as "Restless Leg Syndrome" (RLS). That is what prevents me getting a decent night's sleep almost every night...

However, you didn't mention anything at all about how you are sleeping etc... (?)

Jodie, I was just wondering about your age, & how long ago it was that you were diagnosed, & whether or not you have had a Bone Marrow Biopsy (BMB) done as yet?
Are you taking HU or have you started Pegasys' for your treatment?

I ask about your age because if you are 50 yo or perhaps even younger, sometimes only aspirin is given in the first instance but that's usually more so for ET & not PV sufferers...

Jodie, are you based in Oz? If so whereabouts are you & who is your specialist? Maybe you might benefit by seeking a 2nd opinion? Just a thought...

I know many people w/ an MPN who also later sought a second & even a third opinion... Not all of the medical fraternity are as yet well acquainted w/ MPNs...

Hopefully, very soon others here will also provide their thoughts & comments too...

Once again, welcome to MATES Jodie...

Steve

PS. Jodie this Link on our website also has more information concerning PV:
https://www.mpn-mate.com/polycythaemia-rubra-vera-pv/

PPS. Hope this helps a tad, but usually best chatting w/ other here about what they do, & where they are up to in their MPN journeys... As I mentioned, I am happy to share my full contact details w/ you if you like? Just let me know, & I shall email them directly to you... Katie is also usually happy to share here mobile details too if you'd prefer to chat w/ her also...

Thanks for the quick reply Steve. I thought it might be restless leg syndrome too. It's just horrible, and I don't sleep well at all, which makes me even more tired. I just wanted to know if it was related. I had some ģood news last week from the haematologist, the monthly venesections worked to lower my haematocrit, so I only have to go every 3 months now, so I might feel better. Should I be here as I only have PV?

Hey Jodie...

Of course you should be here... Where else are you likely to find people who can empathise w/ how you are feeling... As I just mentioned on the other site in reply to you... PV is also a very serious illness, & while I do not wish to frighten you in any way... In can and does progress in a small number of cases...
Have you actually had a BMB completed as yet Jodie?
It sounds like you have RLS, and that type of bone & joint pain is also what I have... A BMB will determine what level of fibrosis, (Bone marrow scarring), you might have, if any at all...? As you may not have any... And the RLS is being caused by some other incidental that requires following up also...

Many of our symptoms can be quite similar & yet have other primary causes etc...

There is a really good MPN Specialist on the Central Coast, her name is Dr Cecily Forsyth. Many of the MPN patients here on MATES also see Dr Cecily, & all say that she was a godsend to their treatment etc... I met Cecily many years ago now, & she does really know her stuff...

I cannot stress the importance enough about making sure that you are seeing the right Specialist etc... As I said, this is a likely a "Life-Long" relationship:
https://www.mpn-mate.com/mpn-doctor-relationships/

Anyways, please feel free to stay in touch & you are always most welcome to contact me, or POST on MATES at anytime Jodie... Please remember to "Tick" the Subscription radio box on the Top-Left of the Page, to be certain that you are informed when others reply to your Posts etc...

Best wishes Jodie...

Steve

Hi Jodie,

My name is Kate and I have ET. Welcome to the forum and sorry to hear about your leg pain.
I do get pains in my bones on a regular basis but find some days worse than others.
Most people with any form of MPN seem to get weird pains and symptoms, which are quite frightening at times. This is why this forum is so good because we can all compare notes.

I can thoroughly recommend Dr Cecily Forsyth. She is a great believer in Peg interferon and I am sure you would benefit by contacting her.

As Steve says, a BMP is very necessary to assess any progression of your PV and to ensure you are on the correct medication. I am sure you will have already had one.

If you would like to chat, Steve will give you my mobile number. I have had ET for many years and was diagnosed 17 years ago in the UK. Have had many symptoms, pains and general ups and downs but I am still here!!

Best wishes,
Katie

Thanks for your reply Katie. As yet I haven't had a BMB. I only have PV, and it seems due to my age and health venesection is the go to treatment over here. These medications are a bit confusing as I've never heard of them before, nor have they been suggested.