Newly diagnosed SeroNegative RA

[Eden1]

I have just been diagnosed with SeroNegative RA - although awaiting some further xrays (inc neck and chest) and I think rheumatologist might also be checking for ankylosing spondylitis. I had a hip replacement 8 weeks ago following a a diagnosis of rapidly progressive osteoarthritis although it would now seem this was in fact initially inflammatory arthritis. I have some pain, stiffness and swelling in my knees, hands/wrists and less so in my feet as well as a sore neck. These really only manifested following my hip operation although for a number of weeks prior my operation I had general pain and stiffness which I put down to lack of mobility because of hip and overuse of crutches. I am due to start on mtx this week and I had fluid drained from one knee and a steroid injection last week with another one in 2nd knee this week. I have teenage children and work full time (currently off due to hip op) in a fairly pressured job which I love and was recently promoted. I have found it difficult to deal with my recent diagnosis and really scared for the future. I would love to get back to some sort of ‘normal’ albeit with limitations and certainly back to work. Is this possible?

[Eiram50]

Hi Eden1

Wow! You’ve been through the ringer!

Hopefully, now further examinations are being Carried out and you’ve started MTX, things will begin to improve for you. It sounds like there’s still a bit to go but with the support of the medical team around you, I’m sure you’ll see positive changes soon.

The good news is yes, things can and do get better, generally speaking.

I too have a pressured job as a social worker in a city locality team. Until recently, I always worked full time and have just lately, reduced my hours .

I have a diagnosis of RA and ankylosing spondylitis and in the last four years I’ve had both hips replaced, both knees replaced, surgery on my feet and I’m now on the surgical wrist to have both ankles replaced. But, due to a good treatment plan, I continue to work.

So, keep your chin up ( I know this can be very difficult!) and know that although things may feel extremely tough and maybe even a bit frightening at the minute, things do get better and life does go on.

Wishing you all the best going forward.

Marie

[Eden1 in reply to Eiram50]

Marie thanks very much for coming back to me. You really have had a tough time! Not sure how you have managed to keep your positive spirit. How long have you had RA and was it SeroNegative or SeroPositive at diagnosis- although I don’t know if that makes much difference from reading the posts here.

[Eiram50 in reply to Eden1]

Hi

I was diagnosed in November 2014. It’s a very aggressive form ( if one or the other!) and even now isn’t properly under control but so much better than it was.

I’m fortunate in that I work for a local authority and that they’ve been hugely supportive- a definite factor in my continuing to work.

I honestly have no idea whether I’m seropositive or negative. Not once did I think to ask 😊

[Hidden]

Hello, I have had Seronegative inflammatory arthritis for 5 years. The first 6-8 months were a struggle but once your medication kicks in (usually 3-6 months) you honestly will feel back to full strength. Hang in there, you will get better.

[Eden1 in reply to Hidden]

Thanks very much. Glad to hear this. Do you largely manage ok now that ur meds have kicked in?

[Hidden in reply to Eden1]

Yes! I remember saying to my Rheumatolist that I should give up work in the early days, she encouraged me to wait and she was right. All the best you

[Hidden]

I’m s- negative too...

Although we have common symptoms this disease is very different for each individual. There are some success stories and like me there isn’t.... keep a diary so you can monitor anything that sets a flare off take photos of swellings to show your consultant . People can do remarkably well but it takes time alongside trial and error where medication is concerned.

Sorry you have had to join us but you have come to a great place for information ask any questions somebody on here will be able to help.try not to stress or worry ( easy to say) this disease loves it

[Eden1 in reply to Hidden]

Thanks very much. Yes I think I’m danger of stressing and worrying too much - I certainly have over the past couple weeks. Good idea about the diary.

[Hidden]

Hello Eden1,

I started with RA about a year ago, although not diagnosed until March. Mine is also sero-negative. In February, March and April, from about a month before I started treatment until about 6 weeks after, it was wildly aggressive. My consultant says that's unusual so early on. I couldn't get up from a chair or the toilet and couldn't turn over in bed. I sent my husband out to buy a wheelchair (thank God never used). I'd given up every single thing I normally do. I'm retired, but very active. It was no life at all and I felt extremely upset about it. I told the consultant, "I get up and endure the day and then go to bed and endure the night". For some reason, I got massive pain in my upper arms at night.

This sounds dire, but the good news is that, with methotrexate and steroids, I was able to travel to Carcassonne by train for my niece's wedding at the end of May, even managed to walk 4.5 miles a couple of times while away. In August we went to Germany and I did around 7 miles a day for a week. So far, I've only tried on fairly flat ground. We're keen hikers and usually walk in mountainous or hilly areas. I have no idea if things will get better or worse. This is a very unpredictable disease, but we're planning on attempting some more demanding walking holidays next year and I'm trying to go forward in hope.

So to answer your question, it's certainly possible to get back to some kind of normal, but do be aware that methotrexate takes between 3 and 6 months to be fully effective. You don't say whether you've been given steroids to tide you over. I'm certain they saved me. You may read horror stories about the difficulty of getting off them, but it isn't like that for everybody and they key, as with the methotrexate, is time. If you wean off steroids slowly enough, you may find you don't have trouble with them.

It's not very long since your hip replacement. Don't be hard on yourself and expect too much too soon. As far as I know, hip replacement is s very successful operation. You are lucky to have a job you love and to have had promotion. Maybe it will be worth asking about a staged return to work when you start to feel up to it.

It's normal to feel grief and fear about this disease. How could anyone not feel like that? But take heart and establish a good relationship with your consultant. There is definitely hope for the future. Let us know how you get on.

[Kalimers65]

Hi Eden I'm seronegative. I was diagnosed when I was 38 with 2 young children. I'm now almost 67 with 2 grandsons! I've been lucky and I've had remissions with no meds as well. Like you I was so worried that I would lose the job that I loved but apart from one 6 week period when I could barely get out of bed that was the only time I had off and I retired at 64 ( to look after my grandson). I hope your kids will be supportive and help you more. I started getting my teenage kids to cook one dinner a week and do all their ironing ( they were fussy then).

Eat a really healthy diet, keep red meat at bay or stop, drink lots of water and 'walk through the pain' if possible. That piece of advice was given to me from RS Society when I was at my worst, by a fellow sufferer.

Sending you a 'hug'.

[Kalimers65]

Kalimers65

in a few seconds

Hi Eden I'm seronegative. I was diagnosed when I was 38 with 2 young children. I'm now almost 67 with 2 grandsons! I've been lucky and I've had remissions with no meds as well. Like you I was so worried that I would lose the job that I loved but apart from one 6 week period when I could barely get out of bed that was the only time I had off and I retired at 64 ( to look after my grandson). I hope your kids will be supportive and help you more. I started getting my teenage kids to cook one dinner a week and do all their ironing ( they were fussy then).

Eat a really healthy diet, keep red meat at bay or stop, drink lots of water and 'walk through the pain' if possible. That piece of advice was given to me from RS Society when I was at my worst, by a fellow sufferer.

Sending you a 'hug'.

[Eden1 in reply to Kalimers65]

Thanks so much for that - very reassuring. Are you on meds now? I’m interested too about the diet - I got a couple books on an anti inflammatory diet for arthritis and I’m giving that a go. Not sure of course if it will make a difference but cutting out the red meat, coffee (which I drank loads of previously), processed and sugary foods etc and for now anyway I’m gluten free. I know there are mixed views about diet making a difference but at the moment I will try anything. I’m seeing my rheumatologist tomorrow evening as still waiting on a couple x-rays to come back and to get a steroid injection in knee. I think he is also to start me on methotrexate. Just very anxious about what’s in store for me and really hoping I can get back to a sort of normality and back to work. Thanks

[Kalimers65 in reply to Eden1]

I’m reluctantly on Sulphasalazine. My consultant is trying to persuade me to think of Biologics but I’m not happy about that particularly as my little grandsons are very generous with their germs! My consultant is giving me time to see what a plant based diet can do as some of her other patients have also found it helpful so that’s good.

I bought ‘A Kitchen Miracle’ from Amazon which another member of this great site recommended.

20 years ago I was so poorly I thought I might be in a wheel chair and here I am ( touch wood) able to walk 4 miles a day.

Their is so much support and information on this site.

[Kalimers65]

I think I may have sent my reply at first to another person. Ooops!