Seronegative arthritis

mstake

Hi,

I'm new to this site. I'm 43 mother of three. I was diagnosed with seronegative arthritis about 18 months ago. I don't know anyone else with this type of arthritis.
I've had flare ups with some finger joints. I'm not sure what to expect with seronegative arth. ?
Read one forum message which mentioned RA gloves. What are these ? Are they helpful for finger flareups ? If so, where can I get some ?

Also, what meds are any seroneg members on ? I'm on 20mg methotrexate and naproxen. Just went up to 20mg three weeks ago. Do you find these helpful ?

What about special diet - can this help ? My Rheumatologist has said no link - just keep a healthy diet. Any experiences where diet has helped ?

Would be really grateful for some feedback as feeling a little on my own with this !

dorcas

Hi mstake,
nice to meet you

First of all, you are not alone!! there are lots of us here on the forum who have one of the many sero negative arthropathies.

sero negative just means that with the type of inflammatory arthritis that you have you don't have a positive rheumatoid factor showing in the blood tests.

I have Psoriatic Arthritis, which is one of the sero negatives. Arther affects my hands too and I've found that splints help....you can get them form OT. I've never found that diet has any influence...but maybe that's because I like my food too much.!

I've just come off Humira and waiting to start another anti tnf. I also am on the injectable Mtx, Tramadol and Amatriptyline.

As far as meds are concerned my own experience is that it is treated very similarly to RA..with some exceptions. Your rheumy will keep you right and will monitor how your body responds to the meds and make changes if and when they think best. I've always left those kinds of decisions to them as I know they have my best interests at heart :!:

There are good info leaflets on this website...if you click on 'publications and resources' on the home page you can just put in 'sero negative arthritis' into the search bar and will find the info quickly from there.

hope you enjoy being part of this really friendly community.
you are not on your own with this and everyone here will support you and be pleased to answer any questions if they can. You can also phone the helpine too....they are very helpful. :!:

Iris x

frogmorton

Hi mstake

I reckon I have sero-neg too. As far as I know my bloods have all been negative, but tehr heumy calls it RA - so who knows.

What I do know though is that you are not alone - we are all here.

so far I have been really lucky and am ok9ish) on hydroxy amitrip and arcoxia when I need it.

Splits can help yes and the rhumy can refer you to the ot for them.

Finally I do hope you find a lot of support here on this site. Lovely people and sooo helpful.

You take care

Love

Toni xx

ritwren

Hi mstake and welcome to the forum. You'll never be on your own now.
It's full of helpful information and lots of lovely people who only want to help in any way they can.
I have PA too (which is one of the sero negative ones) and am on 20mg Methotrexate injections, Temgesic, Celebrex and Tramadol and have been for about 6 months now. I'm convinced I'd not be able to hold down my job without them.

As Dorcas says there are lots of sero negative arthrophathys. I got an overall view of what's what by checking out different leaflets here in the arthritis care website.

With regard to your hands/fingers, your GP or your Rheumy nurse can referr you to OT and physio, either of them could help with splints/aids.

As for diet I think it's a matter of eating healthily and trying to have a little exercise as you can tolerate it.
best of luck, hope to see you around
rita

salamander

hi,

Welcome to the forum. There are some great people on here. I have seronegative arthritis too. It's essentially RA but without the positive factor in your blood. Treated the same way. I'm on 7.5 mg mtx and steroids at the moment. Mtx not working yet and steroids keeping me reasonably mobile, though my joints hurt quite a lot quite often.

All doctors say healthy diet only and there is no evidence that other diets work. I put on weight with the steroids and lack of exercise but have gone to weight watchers to get it off!

woodbon

Hi,
Welcome to the site! You'll find lots of people with the same things as you, you'r not alone. The Helpline can give you some information and they are very good at sending out leaflets with lots of good information in them. If you search the internet, as we all do at times, you may pick up lots of things that are untrue or worrying. Keep to the British sites like NHS direct, for the best info, and here of course.

I have OA, but they are still not sure and are running tests, but at least I'm getting something done now. Have you discussed this with your GP? He may be able to give you information. Try not to worry too much, which is easy to say, I know, but you will see on here that you are'nt alone and we all have down times and worrying times, you also see lots of tips!

suziev

hi

just want to say welcome you are not alone, i have 2 kids and i am sero-neg although i just call it RA cos it's the same really!
my hands were a real problem at the start of my time with ra, although lots better now, however don't know about gloves.

am on a lower grade drug called hydroxychloroquine and it took some time to work, however still debating if it's working enough but thats another story!

so people do say that avoiding certain food helps but to be honest i've never found a trigger.

suzie x

woodbine

Hi everyone,

I've found reading this thread very interesting. I have arthritis in my spine, hands and knees. I've had the usual blood test 3 or 4 times over about 3 years because my GP thought that the lumps on my fingers and knee, and slightly out-of-shape little fingers looked like RA. Each time it came back negative. (My mum is in the same posiiton, and her results are also negative - and have been for 20+ years.)

Neither of us have heard any mention of seronegative RA, and have just been told that it must be an unusual and wide-spreading form of OA instead. Last year I went to see a community Occ Therapist who thought that some of my symptoms suggested RA.

My GP has never refered me to the hospital because he says that there's nothing that can be done for OA at the hospital that he couldn't do at the local surgery. If it is a form of sero-negative RA, perhaps this isn't true. I was just wondering if any of you have been in a similar position, and if anyone knows if there's an easy way to distinguish between seroneg RA and OA?

Thanks

Naomi

woodbine

collywobble wrote:

Hi Naomi

I was diagnosed with RA last year, but my bloods were negative for rheumatoid factor. My CRP was only slightly elevated, and the ANA antibodies was very high apparently (which I believe is one of the indicators of auto immune disease). The rheumy diagnosed RA based on my symptoms more than anything.

Was it your GP who did the blood tests, or a rheumatologist? I only ask, because the rheumys can do more blood tests than the GPs. Mine did one of the newer tests (anti CCP), which I believe is a more reliable indicator of RA than other tests (again, mine was negative, but I was still told I have RA).

It sounds as though there has been some doubt over your diagnosis of OA over the years. The only way you'll be sure is via a referral to a rheumatologist. Do you see the same GP each time - might it be worth having a chat with another, and insist on a referral, to put your mind at ease. If you do have some sort of inflammatory arthritis, then the meds you need are different from OA.

Think you might need to be firm and insist on a referral.

Let us know how you get on, won't you?
Good luck,
Lynn xx

Hi Lynne,

It was my GP who did the blood tests. The problem I'm having is that he's the senior partner at the clinic. They're very strict about you only seeing the GP they've specified as yours - the only other one I've been 'allowed' to see sometimes is his wife! He is convinced that there's no need to refer me to anyone at the hospital - I even had to self-refer to the Occ Therapist, who has given me a wonderfully helpful splint.

I did once arrive for an appointment at the surgery, to be told that my GP was ill, so I'd be seeing a locum. He was very helpful and knowledgeable about arthritis - told me lots about joints and arthritis that I didn't know- and suggested some new medication. I had the feeling that he thought my GP should be doing more, but didn't like to say so.Unfortunately the meds had quite bad side effects, and when I went back because of this my own GP was back, and said that he felt that I didn't really need regular meds yet, only co-codamol and ibuprofen when things are bad, plus physio sometimes. Not sure how I can get any further without changing GP.
I suppose that I could keep ringing the surgery and asking them if my usual GP is ill, then make an appt

Thanks again,
Naomi

theresa4

HI Naomi
I would have been in such a state if my GP had taken that line my blood results have always been negative that is something my rheumatologist has no issue with whatsoever. Im sure the new guidelines state you should see a specialist within 3 months if you have poss RA symtoms. If they wont refer you then you need to change doctors and find one that will or speak to your practice manager about changing the GP at the surgery although at this stage I wouldnt think you would get a different decision from any other gP at that surgery now.
I would seriously consider changing GPs but I do know my friend had a medical problem that had been going on for years and eventually she went to the Gp and insisted on a referral to a specialist which he did albeit not very happy but if he makes a mistake and refuses and it is later proven you were correct you can sue so itrs in his best interest to take you seriously.

I hope things improve for you soon

Theresa x

salamander

hi Lynne, I have sero negative inflammatory artritis which is what you talking about I guess. My blood results were raised but not overly high and I have no RA factor in my blood and even my anti CCP is low but my joints are swollen and painful.

I once had a gp who consistently refused to refer me for a couple of things. Finally, I wrote him a letter asking him very firmly to do so and why. He reluctantly did, probably because I had put it in writing - it was evidence should anything go wrong later on. If he still does not comply then you could go to the Practice Manager and then your Primary Care Trust and complain if you don't get any further on. Or you could change GP practice. Also, would it be possible for you to contact your practice and ask to be assigned to another GP? Surely yours is not so arrogant to think all his patients like or agree with him?
Sally

woodbine

Hi Sally - thanks for your suggestions.

My GP insists that because I don't have high levels of inflamation-indicating whatsitcalled I can't have RA. I've frequently asked to see a different GP, but they're very strict. I have considered changing GPs, but unless I knew for sure that the new one would be better, or know more about OA/RA, I'm not sure if it's worth it. I don't know how to find this out. Also, my current GP is the only reasonably near one. The next nearest is near the centre of town, and has a reputation for long waiting times for appointments. I'm really not sure what to do for the best! :?

Thanks for the advice and sympathy anyway everyone

Naomi

salamander

Naomi, it's very important for you to get the appropriate treatment early on if it is RA (sero negative or not.) The national protocol for rheumatologists is to prescribe drugs within 3 months of a diagnosis. This is to prevent damage to joints. If your GP practice won't let you change doctors or refer you then either contact your PCT and tell them what's going on or sign up to the other practice in town. Personally, I wouldn't stay with a practice that was blocking a referral. You have a right to a second opinion. Surely it's better to travel a little way to get a better doctor? I left my practice because they were lazy and prejudiced and signed up to a much better one where I get first class care. The only thing I wonder now is why it took me so long! Be brave and do it!
Sally