Hello to all
I have just had my diagnosis changed yet again.
I started in 2002 with reactive arthritis then in about 2006 I was sent to RNHRD Bath and was told HMS
In 2008 because of some nail pits was diagnosed with psoriatic arthritis and started on mtx
After MRI scans and diag. osteoarthritis no improvement in symptoms. Hair loss with mtx so was given leflunomide, this made me extremely ill and caused joint flare up.
2010 changed consultant, no further psoriasis so diag. changed to just osteoarthritis and HMS but kept on mtx
Now have been told seroneg. rheumatoid.
Mainly affects just knees so have been offered synovectomy, taken off all meds
Can't take NSAIDs because of stomach problems, not good on opiates so left with paracetamol and ice packs.
Anti TNFs have been suggested but not enough joints to qualify. Could refer to panel but I'm not sure that I want these.
Does anyone have experience of just knees (although I do have tenosynovitis in arms)
Anybody had a synovectomy, particularly interested in radio-active.
Interested to know anyone with similar problem
Ellie

Hi Ellie

Just wanted to wish you a big welcome from me. I'm Shirley, aged 50, diagnosed 2 1/2 years ago and on MTX and enbrel.

I was also told i had reactive arthritis about 12 years or so ago and suffered along time before being properly diagnosed so understand a bit of what you have been through.

Good luck with getting the right meds for you, as we are all different in the way we respond to the meds.

Love Shirley x

Hi Ellie,

Welcome to the forum!
I am 61 and have had RA for 10 years, now taking humira and mtx.
Married to Ian for 32 years, we have one daughter aged 22.
Looking for ward to getting to know you.

Doreen xx

Hi Ellie

A welcome from me too. You will find this site invaluable for advise, a place to rant and lots of sympathy. It sounds like you have had a real rough time of it. I do hope they manage to sort out a firm diagnosis with suitable medication soon.

I am 57 married with 3 grown up children and 5 beautiful grandchildren. Have been diagnosed for 5 years and find this site invaluable.

Look forward to hearing more from you.

Best Wishes

Sue

Hi again Ellie,

I forgot to say that my RA affected my knees very badly at first and in the end I had them both replaced. It was such a wonderful relief -the pain went overnight!!! OK, so there is pain from the op but the actual RA pain had gone. I had lots of steroid jabs and fluid taken off but nothing worked for long. I really do sympathise with you. Lyn has had a synovectomy and was originally offered radio-active. I'm sure she will answer your post when she comes on here.

Take care

Love Jeanxxx

Hi Ellie

I am Sheila aged 60 and diagnosed 9 yrs ago. Currently on mxt. I am so sorry you have had so much messing about with diagnosese. I hope they have now sorted you out and you are going to get something that will help with the pain. Lokking forward to speaking to you again.

Sheila x

Hi Ellie

Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us!

I'm Lyn, married to Mike, we have four 'growing-up' children and live in north west Lancashire. I was diagnosed with RA 23 years ago and have since run the gamut of medication (although more options are popping up now and again thankfully!) and had several surgical procedures along the way. Currently on Enbrel, Methotrexate, Prednisolone and Naproxen, and a wagon load of pain killers and other bits and bobs as RA dictates! Ruddy disease has been largely out of control for the last 15 months and I'm far from good right now. But heyho ...

Sorry to hear of the problems you are having obtaining a firm diagnosis. This is rather worrying from the point of view that untreated RA can lead to long term joint damage. The emphasis is on early aggressive treatment from the outset to bring symptoms such as inflammation (this causes the ongoing damage) under control quickly. As others have said RA can be difficult to diagnose as the symptoms can be representative of so many other disorders. As a matter of interest has anyone undertaken the anti-ccp blood test? I assume the Rheumatoid Factor test has come up negative? This test is not ideal; it can be negative in patients who have clinical signs of RA and positive in patients who do not, for example in patients with infections, or in the elderly. CCP antibodies are much more specific for diagnosis of RA, meaning that if present they are more likely to indicate the presence of RA. An elevated CCP can be found in a significant number of patients who have a negative RF, and therefore can help to make a diagnosis.

Although RA tends to start in a few joints it almost invariably moves on to affect others. Mine started in my feet but has, over the years, ended up pretty much everywhere with my knees being the worst affected at the moment. As Jean said, I have had a synovectomy and currently doing battle to try and get another on my left knee and one on my right as I feel this is the only way forward for me right now. That said, I am not making progress persuading anyone! The synovectomy I had was a surgical one and extremely effective lasting a good 7 years or so. At the moment I am not in a position to stop meds so cannot consider surgery. Radio-isotope and Osmic Acid synovectomy have been a consideration but orthopaedics have advised that they do not recommend either of these in patients with RA as it can impact on future joint replacement should it become necessary. More frequently patients require bone grafts due to damage incurred during the synovectomy process. I will add here that this is the view in this area of the country; it could be completely different where you are!

Sorry this introductory post is so long-winded ... you have caught me in essay mode today ... it happens sometimes!!

Look forward to getting to know you,

Lyn x

hi Ellie,

just wanted to say welcome from me as well,

i've failed on Methotrexate and Hydroxy but just started Humira last week,

the Forum is brilliant for learning so much, you will always get advice and support .. so never feel alone.

as you can see you've had so much advice already,

keep posting

Suzanne x

Hi Ellie
Just want to say welcome and I hope they get your treatment and diagnosis sorted out for you. Take care and keep posting.
Love Ceri x

Thanks to everyone for their replies. I really feel for those of you with lots of problems.
Some very useful outlooks and experiences.
Thanks to LynW for her experience of synovectomy. I didn't know about the radioactive synovectomy maybe causing a problem with a future knee replacement, I will remember to ask the consultant as he has suggested that this is will be needed some time soon.
what criteria do you have to fulfil to be offered knee replacements ?
At the moment I'm thinking I will probably go for it, I have an appointment in December to discuss.
Still feeling quite good from steroid infusion, how often can you have these ??
Kind wishes to all
Ellie