Joint pain: Pv or arthritis?

[Boss1]

I have recently had joint pain which has come on fairly rapidly in the last few months.It started in base of thumbs and spread to fingers and especially knuckles. Is really painfully first thing in the morning and improves with use. Toes as well. Have had blood test for rhuematoid markers which have come back negative but have a friend who has had arthritis all her life and says hers is always negative! Had hand x-ray of hands for osteo and that is clear. I am just about through the menopause, I think, and have also been told my joints ache because oestrogen has left my body! Are these symptoms PV? It does seem specifically joint and not general bone pain.

[mhos61]

Hi Boss 1,

just to say that my joints got a lot more achy after the menopause.

For rheumatoid arthritis; you can be either rheumatoid factor positive or negative and still have it.

My husband has had RA for over 25 years, he is positive for rheumatoid factor, which apparently runs a more aggressive course. Incidentally, it took a while for it to show up in blood tests.

Mary x

[Boss1 in reply to mhos61]

Thanks Mary. Just wondering whether the joint ache might be a PV sympton. My counts haven't gone up. They seem to stay pretty level and I have a venesection very 8 weeks or so. On baby aspirin and not any major drugs yet. Would be interesting to know what others with PV/ET experience joint pain wise....

[Viki7 in reply to Boss1]

Hi Boss, I have ET and like you I am just on aspirin. I get terrible aches in my ankles, hips, knees, neck and hands (thank goodness not all at once usually!) - one of my knees is arthritic but the pain in the other joints feels different when it occurs more kind of sluggish and when I walk it feels like I have lead weights on my feet. I am just starting menopause and my GP thought it was that (before my ET diagnosis) but the team at the hospital seem to think it is down to ET. Mine also improves as the day goes on but can also be brought on if I am particularly active. I have not tried it but a friend of mine recommended a choline supplement which reduces inflammation in the body, it is also good for enhancing brain function (apparently) - I get a lot of brain fog with my MPN (that's another story) - I thought I would bring it up with my consultant to make sure it ok. Wonder if anyone on here has tried it?

[mjfin72]

Hi

I discovered I have ET in Sept 16 following blood tests. I had been experiencing joint pains and stiffness in my fingers for a few months. Worse in the mornings. Then it began in my feet. Again worse in the mornings or after periods of rest. Tested for RA, menopause and connective tissue disease etc but all clear. My consultant initially didnt think it was ET related but I think now he is starting to wonder. We are in discussion currently about whether to start treatment as my platelets have been around 1.1 million for last 8 months and with the joint pains and experiencing tingling/ crawling sensations recently he feels it might be worthwhile trialling the meds to see if that helps. I will be back to see him in Jan.

This forum is great for sharing experiences as there is always someone who is going through something similar.

Take care

Mandy

[SoledadBarcelona in reply to mjfin72]

Hello,

Can you tell me what mean RA and connective issues?

Thanks

[mjfin72 in reply to SoledadBarcelona]

Hi there.

RA is Rheumatoid arthritis and is a form of autoimmune connective tissue disease. There are lots of types of connective tissue diseases. You usually need to be seen by a rheumatologist for a diagnoses and they can be difficult conditions to diagnose and it can sometimes take years to get an answer.

Since my post I have been diagnosed with osteoarthritis and fibromyalgia which explains the aches and pains I experience. Being on treatment for ET hasn't changed or improved the joint pains and in fact since starting Peg interferon I have pain in my hips and legs. I describe the pain as a bit like sciatica. It's still early days with peg and I'm hoping it settles down soon.

Hope that helps with your questions.

Best wishes

Mandy

[Boss1]

Thanks Mandy.

I know I will probably have to take that step at some point. I t will be interesting to know what effect any meds might have on your joint pain.

I keep hoping it is not the PV as my platelets stay around 540 and I'm on baby Aspirin and have a venesection about every 8 weeks. But of course it is usually better to find answers!

Best wishes

Vanessa

[mjfin72 in reply to Boss1]

Hi Vanessa just giving you an update since I last posted. I have been on Hydroxy now since Feb. I was initially on 1 gram a day and within 4 weeks my platelets dropped from 1.2 mill to 495. I reduced meds to just 500 mg a day but platelets back up at 895 so now alternating between 500mg one day ,1 gram the next. The treatment however has made no difference to my joint pains and stiffness. I finally got to see a rheumatologist on Monday after 18 months waiting. She strongly suspects osteoarthritis and said that joint pain and stiffness isn't usually seen with essential Thrombocythemia. Have to get xrays done next week and had loads of blood taken to rule out connective tissue disease. Are you still experiencing joint pain? Might be worth asking for a referral to see a rhuematoligist if you are. Hope your keeping well otherwise and your counts still remain level.

Best wishes

Mandy

[Boss1 in reply to mjfin72]

Hi Mandy,

Since the first post I have been diagnosed with osteoarthritis by a good consultant after examination although nothing had shown up in blood tests or X-rays. The usual supplements don't seem to help but I am on Curcumin for my PV and my counts have come down by themselves.They are almost normal. I haven't had a venesection for 8 months. This is also meant to help with joint pain and I have lots of Turmeric in my diet. It hasn't made a major change yet.

Best

Vanessa

[mjfin72 in reply to Boss1]

Hi

It will be interesting to see if anything shows In my results and xrays. Will have my review in August to discuss results and confirm if def osteoarthritis. Will be a relief to finally have answers after 3 yrs of symptoms. Great news that your levels are so well under control with Curcumin. Hopefully you will get some relief for your pains soon.

Take care

Mandy

[Little-friend-Susan]

I had joint pain in my hands before diagnosis of ET and this was put down to age and arthritis but it has all disappeared since I have had treatment although I am getting arthritis in my knees now. I definitely think thicker blood has something to do with it.

Sally

[flfair in reply to Little-friend-Susan]

Try some magnesium oil on your knees.

[katiewalsh]

Hi. I’m not sure this info will help but coincidentally I saw my MPN specialist Thursday and asked about my joint pain (mostly toes & fingers). Although this is listed as a “rare” side effect of HU, he said he’d never seen it and would expect it would only occur at high doses and when first starting on it. He asked if mine hurt when I woke up or later in the day and said Rheumatoid Arthritis tend to hurt when you wake and Osteoarthritis tends to hurt later in the day.

I think mine may be from having an infusion of Reclast which treats Osteoporosis. I’m still planning to get tested for arthritis though. Hope you figure out a solution cuz I it’s painful.

[Boss1]

Thanks Katie. It really hurts when I wake up but it is not showing up in blood tests or x-rays. I'm a photographer an worried that I won't soon be able to hold my camera! The symptoms sound like RA but I have no idea what it is and neither do the doctors. They just say it is the oestrogen leaving the body which was protecting the bone and now my bones are unprotected!

[forwardocho]

I've experienced a lot of bone/joint/hip pain too especially since being diagnosed (ET Jak2 neg). It could also be my age (50) and the menopause. For the past two months I have had a lot of hip and joint pain and pressed for a bone density scan which I had done 2 weeks ago. My results show a "thinning" in the density in my bones, in particular my hips. My marker was quite away over the line of "normal". My GP has put me on a combination of Vit D and C tablets. Since taking them I have noticed a considerable improvement in how I feel, in particular my knees.

The joys of getting old!!

[flfair in reply to forwardocho]

You need to be taking magnesium as well.

drcarolyndean.com/2014/06/t...

Peter

[Boss1]

Hi there,

I have been taking Vitamin D3 and Magnesium from the time of my diagnosis 3 years ago as advised by my sister who is a Medical Herbalist. She seems to be much more on it than any doctor I've spoken too as regards to nutrition!