I have sero negative RA and have failed mtx, sulphazSine and have been told to stop my 7th enbrel injection but I've had no response to it anyways due to a reaction in my skin. A nice lady from nras just posted me the nice guidelines for when anti tnfs fail. Has anybody else been down this path?
Is sero negative RA more difficult to treat than sero... - NRAS
Is sero negative RA more difficult to treat than sero positive RA?
I'm in so much despair. Feel so down since the consultants on Tuesday. If I'm not asleep I'm sobbing over this dreadful disease. Hopes are wearing thin.
Just wish there was a plan! I'm a Virgo and love having a plan
I too am sero neg, Have been on plaquenil, sulfasalazine, prednislone, mtx injects and now am about to start cimzia - I hurt so much and wonder too what lies in store for me - I read how some tnf treatments work and others dont - I wish I had a magic wand, I would make us all better!!!
Heres to happier days xx
i am also sero neg whats the difference ?
I too am seronegative, and think that my arthritis is due to food intolerance - particularly dairy. Have you considered this?
From what I've gathered over the past year being sero-negative usually makes diagnosis much slower and therefore treatment often comes late in the day when the disease has become further advanced than is ideal? Maybe that's why sero-negative people are harder to treat medically? Have you tried alternative interventions such as food testing Marnie might be worth a shot as you have nothing to lose in your present predicament? I cut out wheat back in May and am now mainly dairy, caffeine and sugar free. I don't know if it's made a difference because the pain has continued to flare but perhaps if I was still 2 stone heavier than I am now and hadn't tried food elimination I would be much worse than I am? It has certainly helped me to lose weight and therefore increased my confidence and self esteem and it's a great way of dieting without actually being on a diet. Hard on steroids I know believe me but it is at least something you can do for yourself.
I did read somewhere that the prognosis for sero negative sufferers is better in that the disease is less aggressive and can be more easily treated if caught early enough? But then I read in another report that people who have slow onset RA have a much poorer long term prognosis than those for whom it comes on very suddenly so not sure how these fit together?
To be honest I'm not actually quite sure how being sero-negative is defined? For instance I have a positive RFactor but it's only a low positive so my rheumy was a little bit dismissive. Then he wrote to my GP recently and said that my anti-CCP test had come back negative and on that basis he was unlikely to diagnose or put me on a DMARD after this forthcoming consultation. I emailed the physio who is our rheumy team here and said that I found this quite distressing because it would mean another 6 months in limbo sucking painkillers and steroids while he waited for my blood to turn positive - and I hoped he would by looking at my symptoms not only at my bloods. She assured me he would but we will see.
What I don't know is am I sero negative if I have a low positive RF but a negative anti-CCP? I did read somewhere that this way round the diagnosis and treatment should be regarded as sero-positive with symptoms being assessed carefully at regular intervals but am very muddled because the anti-ccp is the one that's most specific to RA and if I am negative surely that means quite a lot?!
Take care and so hope things start to improve for you soon.
I already have confirmed Coeliac disease and dairy intolerance so it's not either of those.
I was told that sero negative is when there is no rheumatoid factor present in the bloods.
Marnie87: Hi, it's Loret again. Just answered a previous post from you regarding work advice to a young lady. Ironically, besides me saying your history is very similar to mine, I am also Sero neg. RA and/or Psoriatic arthritis. I do have a lifetime history of having had Psoriasis since I was a baby. So the belief being it has gotten into my spine, feet and hands. Symptoms are very similar and PsA is treated exactly the same so guess it doesn't matter what they call it. It hurts. Sometimes my hands hurt so bad at bedtime, I have to bandage them in hot towels over night, with a Microwave heating pad.
Also, ironically, I am a Virgo! Aug. 23
I was diagnosed sero negative prob about 15 years ago, and I would agree that this only seems more difficult to treat as it takes longer to diagnose for us so the RA has got more a grip by then! The first consultant I saw told me that in cases of sero neg they have to make the diagnosis based on continued symptoms, so endless rounds of blood tests and question about if you had a cold or infection when bloods were taken. Once they can see the pattern and diagnose you the next step is finding the meds that work for you. As I was 30's when diagnosed first I chose not to try mtx due to the chances it can lead to fertility problems and went for sulfasalazine instead. I found this works for me only when combined with hydroxychloroquine sulfate, it has never been enough on it's own. Finding the right anti inflammatory took some time too, so things were pretty hellish when first diagnosed. I would also say it takes time to come to terms with it, we think of arthritis as an old persons disease then develop it in our 30's in some cases and it is hard to come to terms with. Keep persevering, you will find the right treatment for you and things will get easier and be less depressing. Hugs x
Dont dispair, yes some of the drugs dont work so well for sero negative arthritis but people are often still given them.. quite a few people on here are seronegative and I am one of them..
I tried sulphasalazine.. didnt suit me at all ended up in hospital !,methotrexate was ok til the dose got to a certain level.. then my body couldnt tolerate it!,
My consultant didnt offer anti tnf to me.. we had a constructive disagreement ! I reluctantly agreed to gold by intramuscular injection and after about 6 months it is working reasonably well