Hiya,

yes I am sero-negative and must find your blog! I initially had HUGE amounts of blood tests as the rheumy looked for every rare and whacky auto-immune disease just to make sure it wasn't anything else. She relatively quickly settled on sero-negative as everything else was classic RA.
I can't say it has made much difference - it progressed quite quickly and aggresively, but no signs of any erosion thank goodness. Unfortunately i can't tolerate DMARDS, so have now started on Humira - all standard RA stuff.
Do you think your RA is different to those who have RF? I'd be interested to know if there is a difference.

take care
Alison

Hi
just catching up yes i was diagnsoed with this after 20 year round about but for me tis temp taken away again till sure i do don have sle lupus to or instead of very complex lol.
ive met few had long winded road to diagnsois with sero negative also.

yes no erosions, no rf factor same treatment,though weirdly ive switched twice showing postive large rf factor1
currently on mtx and planequil.
t care melly

Hello there,
I am sero negative too, diagnosed after a year of severe pain / problems in 1998 and immediately treated aggressively with sulphasalazine which luckily i have been able to tolerate, i worry about long term effects of meds sometimes but regular blood tests keep an eye on things
i was told risk of erosion can still be apparent with sero negative diagnosis, probably need to read more about this but am careful with posture, footwear and keeping good alignment when sitting at computer etc

I've never been sure of this as have been told that have negative RF but now have quite a bit of erosion in my wrists and feet?

Julie

Hi, I'm also in the sero negative RA club, and was diagnosed last year after presenting with RA symptoms. I think it's something to do with testing negative on the rheumatoid factor and CCP blood test whether you are negative or positive. My bloods have tested negative on everything, apart from having consistently raised CRP for most of last year and currently. However, I do have erosions in my thumbs and big toe, and a couple of small lumps that might be RA nodules on my fingers.

I can't tolerate DRARDS, now got a doggy liver thanks to MTX and Sulf, and have recently started Humira, and waiting for the wonder drug to kick-in.

Alison, have you noticed anything yet? I've noticed a slight improvement in my energy levels, but nothing else. Due my second "stab" tomorrow and hoping to see some improvement soon.

Love,

Barbara
XXXXXX

I am sero positive, but it seems just the same as sero negative to me. my bloods dont seem to show anything even when i am having a flare?

nite nite xx Anne-Marie

Hi Melly and all,
i think best to avoid xrays unless recommended, just have them when needed so i think consultant is probably best to advise on this one,

I must admit i think best never to compare too much - we are all so very different and complex, all with very different medical historries, life circumstances etc
sharing stories is so good tho' because you can feel so very alone with all this, and confused!

ive never been given the impression that it is only sero negative, i was made very aware of risks of erosion etc at diagnosis although that took a whole year, probably most damage happened before then.....
i was told without meds i could have been in a wheelchair, but who knows.... it is very confusing.... i do think still most important to be very aware of correct posture, alignment is crucial, malalignment can lead to deformities,
This was really drummed into me when first diagnosed maybe cos two older doctors were close family friends and showed extra concern but the consultant who diagnosed me was the same, making sure i was aware of how to minimise risk of erosions

also i used to work with a lady with physical and learning disabilities who because of society years ago had not always received the best medical care and now had deformities - maintaining alignment was crucial to her pain management and could actually have prevented some of her problems,

have got some physio friends tooo they always remind me about importance of maintaining good alignment eg when driving, sitting at computer, just day to day things but really important and also not staying in same position too long

Hope not gone off on too much of a tangent..... & hopefully helpful xxxxx

HI,

I did say something about sero neg RA on another of Melly's threads but I'm afraid ALL RA can cause joint erosion.

Because RA is such an erratic disease there is no simple way of knowing if/when/how a joint will become eroded or if it ever will.

Here is something from a medical journal I have regarding sero neg RA:



The one major difference that medical studies have found is that people with seronegative rheumatoid arthritis seem to have less overall joint erosion and damage than people who test positive for the antibody, and usually do not develop nodules under the skin, as the positive group tends to do. Otherwise, the symptoms and progress of the disease appears to be similar in both groups. So, if you test negative for the antibody, you will still likely experience joint swelling, stiffness, and damage, but not to as great a degree as those who test positive. It may be small comfort, but it is some consolation nonetheless. If you are negative, appreciate the fact that you've been given somewhat of a reprieve--your symptoms, though they are there, could have been much worse, so you are among the lucky group that may be able to retain your joint function and independence longer than other patients with the disease, maybe even throughout your entire life.

Love,

Amanda

Thank you Melly!

RA is SO nasty...it always seems to shock and surprise us when we're least expecting it. I am still speechless that I have an eroded hip joint after 6mths of pain!

My old rheumy once said that other joints can begin to erode and may not hurt for years- however he was also the same rheumy who never once did an x-ray on my joints so I take what he says with a large pinch of (sea!) salt! LOL

Love,

Amanda

Really pleased to hear you are progressing on Enbrel, Sue. Long may it continue. It's great to get good news on the forum and hear success stories.
Love Jeanxx