Hi I'm newish on here: I'm not still not sure if I... - NRAS

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Hi I'm newish on here

8 Replies

I'm not still not sure if I should be on here or not!

My blood markers for the RA factor are always negative although I do have OA.

However my consultant says that I have a combination of both OA & inflammatory arthritis.

I had to see him privately as the original appt with the rheummy clinic 3 yrs a go said I wasn't bad enough for them to see me! Over the 3 years it has got worse which Is why I see this guy privately, he does see NH patients but only the severe cases as he is into research & a Prof who works at a couple of hospitals.

I did go back to see an NHS dr who although had the evidence from the Prof of my diagnosis wouldn't believe it!!! I didn't go back to him again!

I've been on Plaquenil for a year or so but it wasn't fully working so last Oct I started Sulfazalaziine & after a few weeks that started to work. I also take co codamol the highest dose, Meloxicam & amytriptiline for pain.

Over Christmas I had a virus which dragged me down & the drugs weren't as effective.

I saw him again last night as I;ve been feeling really rough. He thought that it was the virus attacking my immune system & so has given me a steroid injection to turn off the flare up.

He assured me that I do have inflammatory arthritis, I always feel a fraud & wonder if I'm just making it up! My asthma is like that as well I don't present as everyone else does!!

So I'm hoping the steroid will kick in & I'll start to have less pain & more energy!

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8 Replies
sylvi profile image
sylvi

Pauline,you sound just like me with your symptoms. I have been like you over xmas. Still am,i am on my third course of antibiotics. I think you should try your hospital again as you sound like you need help. Ra does attack your immune system,thats what the disease does. You will be weakened by the virus you had at xmas and it will take longer to recover,rest is all about all you can do i'm afraid.

Take care sylvi.xx

WiseSarah profile image
WiseSarah

Hi Pauline,

I always feel like that too! I have been diagnosed for 3.5 years now by a consultant in the UK and a second opinion consultant in Dubai, where I live. I still see my UK consultant every 3 months and my consultant here every 4 weeks. I alway feel like it must be a big mistake and that I'm making it all up!! I have been told that I am in denial by a therapist who I saw when i was first diagnosed as I became very depressed. I also have fibromyaliga for which the standard drug is amytryptiline so I wonder if you have that too? I don't have the RA factor either - both my consultants tell me that this is not unusual and some people who have the RA factor don't have RA. It is by no means the only diagnostic tool that they look at. Sarah xx

julieporter profile image
julieporter

Hi Pauline and welcome from me too.It's quite common for there to be no rhuematoid markers,so don't worry about that - your rhuemy has obviously looked at the whole picture and diagnosed you .One thing i've learnt about RA is that everybody is different symptoms.severity,blood results etc so i don't really know what normal is! As your rhuemy probably told you it can take up to 3 months for the sulpha to make a difference so i hope the steroid will ease your symptoms till it does.

Hope to hear from you again soon

Julie x

helixhelix profile image
helixhelix

Lots of us are sero-negative, and as Julie said our RA is very variable so concentrate on getting better from where you are and don't waste energy feeling like a fraud. I've always found the steroid jabs are like a marvellous holiday, but make sure you rest up for 24-48 hours after the jab to get the max effect. It should kick in soon, and hopefully give you a well deserved break from feeling so bad.

sciqueen profile image
sciqueen

Hi Pauline

Welcome!

I think if you have no ra factors, that means your sero negative. There are others on here who have ra and are also sero negative, but they do have ra.

Some peps have both ra and osteo and a bunch of other types of inflammatory arthristis also, as well as ra, so you are not alone or unusual.

I also take plaquenil, mtx, cocodomols and am stepping down oral steroids.

Hope the steroid injections works for you and you get relief soon.

Take care

Sci x

Thanks everyone!

Not sure about resting - walked the dogs today & have got to do childcare for grandchildren tomorrow!!!

welcome to this fab site.. hope you feel better soon x

Yes welcome Pauline! I was told I had sero-negative despite having a positive Rheumatoid Factor (low at 24) so nothing is cut and dry in this business. I still think I might have pushed too hard for a diagnosis too soon but it didn't feel soon at the time and I just have to trust my rheumy to know what he is doing really. I came on here prior to diagnosis because I needed to stay sane and this place really helped. Take care, Tilda x

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