Hi Been diagnosed with Pv this year after months of tests. Have had really bad muscle and joint pain for the last couple of months

[sparko35]

spoke to my consultant about these pains and he is going to refer me to a rheumatologist has anyone else been referred to a rheumatologist and if so what sort of tests did they do.

[sheldale]

Hi Sparko35

I have ET, diagnosed 3 years ago. For the past 18 months have had severe pain in my legs and arms (mostly legs). I have gone from someone who could walk and play with my grandchildren to someone who now needs a stick to walk. I dont say this to depress you as every case is different.

Like you, I was referred to a rheumatologist in November 2012. The tests he has performed so far are, an MRI, a tingle test. which checks which nerve endings are still working (this showed that I basically had nerve damage to my feet which explains why my feet always feel cold to me - but not to the touch)

Had cortizone injections in my back (4 the first time and 5 the second time) unfortunately these had no effect at all.

He now wants to admit me to the day hospital to give me an epidural which contains pain killer and cortizone. this is booked for later this month as we will be on holiday. I will let you know how this does.

Really dont know if this has anything to the Hydrox/Anagralide I am on or another problem.

Hope this helps and keep your chin up.

Best wishes Gwen

[aberbrothock]

Hello Sparko35. I have not been referred to a Rheumatologist as my pains are not that severe. However I blame the Hydroxycarbamide as I only feel sore and stiff around the lower back and hips when I am on it. I only stay on the Hydroxycarbamide for approx. a month to reduce the platelets. I don't like what the medicine does to the rest of the body i.e. the good cells!

[Aime]

Hi, I have PV and have lots of joint pain/problems. I do have osteoarthritis which is a separate issue but seem to be prone to inflammation of soft tissue and compression to nerves, tendons, etc. I have had a lot of cortisone jabs in various locations to help with the pain. Kind regards Aime

[Chrissie10]

Hi Sparko

I am still undiagnosed with PV but am having venesections and an daily asprin. I had pain in knee and shoulder last year and these have started up again just lately, so having steroid injections to try and help. It seems quite a common problem to get joint and muscle pain.

[jane13]

hi, I have had a very similar problem to you with bad bone and joint pain. There is some evidence on the web from US studies that an over-active bone marrow can give bone pain. My haem says my bone pain nothing to do with PV as my bloods are under control. So I saw a rheumatologist who, without quite saying so, clearly thought that my PV might be a factor, especially as I had night sweats which seem to be a sign of the disease progressing. She also identified mild osteoarthritis (am 57). I had an ultrasound and blood tests.

However, here's the interesting bit: until about 5 mths ago, my PV had been controlled by both hydroxyl and venesection. More recently, for some reason, I have not needed the venesection, and have not had night sweats, so presumably my bone marrow is less active and..... the bone pain has stopped!

So what's the relevance to you? I don't know if you are having venesection but if so maybe worth another chat with your haem about PV causing bone pain even if your bloods are under control (as well as seeing the rheumatologist)

[sparko35]

Hi

Thanks for all the reply's. On aspirin and venesection had last one about a month ago have blood tests every 2 weeks bloods seem to be ok at the moment but the joint pain seems to be getting worse saw GP last week and said he would chase up the referel to the rhematologist see my haem in a couple of weeks so will talk to him about it again.