PVNS is Pants! and it's Not Fibro but Autoimmune Disease??

[Trixybell82]

Hi peeps not been on for a bit as been doing wedding stuff, I saw my consultant (armed with a list of questions as long as my arm) on Monday to be told that the PVNS I have in my left leg is infact in both my knees and as it's systemic it is more than likely in my other joints too. He also went on to say that with my other list of inflammatory conditions I most like don't have Fibromyalgia but some kind of autoimmune disease as this is linked to PVNS. I've now been referred to a Rheumatologist to have further tests and treatment. To say this has all been a bit of a shock is a bit of an understatement and I'm now anxiously waiting to see this Rheumatologist to see what happens next. Anybody else had any dealings with this rare disease I have??

[Hidden]

Hello

If this is PVNS a low grade tumor and not Fibromyalgia, they are putting this down to different disipline and it may be RA an autoimmune condition where the immune system attacks joints etc. Further tests and scans most probably be needed. and if positive treatments will be undertaken for this group of arthritis. This will be decided in clinic and

I cannot comment on what they may find.

I have no experience regarding PVNS only that it effects young children and adults, operations seem to be undertaken and generally the prognosis can be good, although only your Consultants can give that view.

All I can say is if you need support and understanding you will get that on this site You may also receive further support on NRAS site, a sister site to this one that deals with RA .

Good Luck,

BOB

[Trixybell82]

Hi Bob

Thanks for the info in RA groups I will check them out. I have had a tumour and my entire front fat pad removed from my left knee and treatment also to my right one during a double arthuroscopy operation 12 weeks ago. The tumour was removed and analysed and PVNS was disgnosed. I have now been referred to a Rheumatologist as my surgeon believes it's systemic and more than likely effecting my other joints that I am also having problems with. I will be having further tests and will be discussing radio therapy for PVNS with the Rheumatologist also. I am waiting this appointment along with one to see my pain specialist as I have been taking prescribed medication for fibromyalgia since last May and I'm now worried I'm taking it for no reason as really I should be on immunosuppressants. We will have to wait and see what these Dr's say.

[Hidden]

All the best

GOOD LUCK

BOB

[EOLHPC]

Hi trixybell (great name)

Your ? chimes with my version of a chronic pain journey. I hope you'll bear with me if I give some background before I get on to you & PVS

I'm 60, was diagnosed with lupus several times as an infant-teen, but no one actually told me

about my lupus, and then I moved to the uk at 21 without my health records...becoming a sort of 'mystery patient' in the NHS.

my mother finally told me about the lupus diagnoses 2.5 yrs ago when nhs rheumatology FINALLY figured out that a multi system autoimmune condition was underlying the life long dodgy (haha) health that a host of NHS clinics had been telling me was "normal" (I.e. my chronic spine condition + other individually diagnosed & treated seperate conditions, all named & somewhat effectively treated by different speciality clinics). So, despite frequently attending various clinics, NO nhs consultants took enough of an overview to connect the dots (all these mainly secondary conditions) and find my primary condition until I was 58....so, i don't know how old you are, but I hope you're younger than me...and I applaud you & your drs for moving along relatively efficiently (?) with your diagnosis & treatment. Autoimmune condition- experienced people I've met tell me it can take 7-20 yrs to achieve a definitive diagnosis of a patient's version of these conditions, especially of something like systemic lupus, ...and during those years, repeated test' results & response to treatment are amongst the diagnostic tools. You probably know all this - forgive me if I'm just going over familiar ground.

Anyway, in the era before my re-diagnosis with SLE, I spent decades conscientiously trying alternative therapies, usually on daily Rx NSAIDs & analgesics, with only minimal relief from pain. the most helpful procedures I underwent included a series of bilateral spinal facet joint denervations When I turned 50, in desperation, I also went on an anti inflammation diet & supplements recommended by my pain consultant...this helped enough to mean I'm still doing it, but, thanks to a GENIUS lupus expert, now I'm responding REALLY well to daily treatment for SLE: 400mg hydroxychloroquine (antimalarial) + 1000mg mycophenolate (immunosuppressant) + nightly 20mg amitriptyline)! I'm feeling better than I have since the 1970s when I left the states! Ok, the serious Rx I'm on must be monitored closely, but the NHS has stepped up and I feel part of a team approach to increasing my quality of life as much as poss in whatever years I have left

now on to you: as i understand it, Pigmented villonodular synovitis (PVNS) is a benign proliferative disorder of uncertain etiology that affects synovial lined joints, bursae, and tendon sheaths. These parts of the body are amongst the main parts of my anatomy affected by systemic lupus....all of which are responding well to my SLE RX. And it is characteristic of SLE to affect synovial joints rather than no synovial joints.

So, I'm wishing you all the very best as your diagnosis process continues. You have been through a lot of really heavy duty stuff, and I v much feel for you. Take heart! Seems to me you are well on the way along the right track!

XO

PS in 1998 an ortho surgeon FINALLY figured out that the big 14 yr old lump drs had told me was arthritis was actually a cartilege tumour: a Chondrosarcoma....in one of my finger joints. The nhs amputated that finger immediately. my drs think an injury had caused joint inflammation and an SLE attack which resulted in the tumour beginning. Stranger than fiction....that's how I look at it, anyway....

[TeresaMB]

Hi I know it's been a few years since you posted but wondered how you are getting on as I have the same condition and just about to go see a specialist, again!!

Thanks