C reactive protein blood test

[Aime]

Hi Guys, I recently had a range of blood tests due to an increase in osteoarthritis and joint pains. I will soon have to get a partial replacement of at least one knee but maybe two.

The blood test for c reactive protein has come back raised and the test has to be repeated next week. This could be all due to my arthritic tendencies but I wondered if anyone else with PV has experienced a rise in this test also as I have heard there can be a link. Kind regards Aime 😺😺

[socrates_8]

Hey Aime...

Not sure if all I am about to reveal is relevant to you and your condition, however...

I was just explaining vie another post, that I learned that I suffered from another rare disease known as 'erythromelalgia' (see link below):

emedicine.medscape.com/arti...

I have also since learned that this disease ('erythromelalgia' ) is also related to MPN sufferers of ET & PRV. (I found a few peer-reviewed articles to that affect too).

Since my diagnosis last May, I have also learned vie CT scans that I have a severe osteoarthritic degenerative discs in my lower spine that are developing what are known as 'osteophytes' at the edges of the affected vertebrae, and that these in turn are affecting the nerves in my spine and legs etc.

I was struck by the coincidental appearance of this issue not long after diagnosis of my MPN, and thus wondered if the two issues might somehow be related as both are emanating via the bone marrow, in a manner of speaking.

As this time, no one is making such a possible connection... apart from myself that is...

Anyways... just thought to share...

Steve (Sydney)

ET (per-fibrotic) MF

[Aime in reply to socrates_8]

Hi Steve

Thank you for your post. I do have erythromelalgia according to the symptoms on the link you sent. What you say about the osteoarthritis of your spinal discs is very interesting as although I have endured osteoarthritis for many years, it has never been at the accelerated pace it appears to be going through just now which I am finding a bit scary. I have had four shoulder ops in the last 18 months to get rid of extra bony bits and now it is attacking both my knees. In the last three months the prognosis for a partial knee replacement has gone from "you will need it in the future" to what I expect at my appointment this Friday "you need the op now, " as the pain has also become more severe.

As far as I am aware, as you say, no links have been established between our MPNs and osteoarthritis or erythromelalgia but it definitely makes you wonder.

I hope your back does not get too bad and your ET is easily controlled. If you can, keep in touch. Every sympathy for the pain you are in, whether it be nerve or bone pain, it is very painful and disabling and it is hard to stay cheery and exercise too. Kindest regards Aime xx😺😺

[socrates_8 in reply to Aime]

Hey Aime...

Thanks for your responses. Yes, I also felt that in the instance of the flare-up in back pain that I have been experiencing, that its occurrence was strangely coincidental etc... While I have not discovered any links to MPNs and osteoarthritis as yet, there are already well established links between ET/PV and erythromelalgia. I do have access to a few academic/peer-reviewed articles to that effect...

Apparently, according to those articles, there are basically three types of - erythromelalgia...

And one of those is thought to be directly related to people suffering from an MPN.

Hence, it seems that having my case of 'erythromelalgia' (which had been previously misdiagnosed on many occasions), 'retrospectively' was always in fact related to my growing MPN condition.

What has happened to my hands/fingers, and to a lesser extent my toes, dates back 8-10 years, and therefore it could be that the emergence of 'erythromelalgia' can possibly be viewed as a 'diagnostic' tool for the onset of MPNs?

Creating funding for a study into this and osteoarthritis might then be, money, very well spent...

Steve (Sydney)

[Aime in reply to socrates_8]

Hi Steve, yes definitely something worth funding. I hope your conditions don't get any worse as I was having a moan to myself earlier about my aching knees! However I have now kicked myself on the butt and told myself to stop feeling sorry for myself! Aime xx😺😺

[socrates_8 in reply to Aime]

Hey Aime...

Thanks, I hope that you find some relief too...

I have found many an inspiration here already. And you are right of course, trying to always remain positive has to be the best way for us to manage our collective condition/s...

Have a brilliant day Aime.

Steve

[Aime in reply to socrates_8]

Hi Steve, sorry I meant to say that the results of the blood test which I had can be down to inflammation connected to the osteoarthritis or as far as I understand to my PV.

Kind regards

Aime x😺😺

[Hidden]

Hi Aime, i too have bad osteoaritis started in my late 30s its now in my neck ,back ,knees and toes, when my platelets started rising in 2012 my heam thought it was this causing ET because its inflamation in the body . im having a bone density scan i. Aug for osteoporosis this is via my Gp my Dad had it and he had blood problems also later in life i believe it was low platelet and he hah Rheumatoid A ! There is alot of confusion out there regarding these conditions i think best wishes Holly

[Aime]

Hi Holly, thank you for your reply. It does sound like there could be some kind of connection. It is not nice having two chronic conditions but I just try and take things in my stride. My daughter is getting married on 12 October so I am hoping that the hyaluronic injection I had into my knee on Friday will keep me going until after then cos I don't want my knee replacement op before the wedding.

Hope you keep as well and as pain free as possible. Kind regards Aime xx😺😺