So, I was diagnosed with RA around 2 years ago.

[rab333]

My ESR was raised but not my rhuematoid factor. Consultant says I am Sero-negative RA. I started on steroids for a time then added Sulphsalizine, This affected me mentally so came off it and started methotrexate, whilst weaning off steroid(Prednisolone). Started coughing up white frothy sputum so consultant stopped this also and I was then assessed for " wonder drug " Humira. Consultant said I will feel like new man. I have been injecting this since December 2011 and have steadily felt worse again. The old morning stiffness, pain in wrists and fingers have all returned. I was given Kenalog injection in clinic last week and at the minute feel well. He has said Humira will take time and has added another drug, I am losing interest so only remeber that it begins with " L "...I was off work for the last 4 weeks... my bloods are normal...inflammatory markers not even raised despite pain and stiffness. Has anyone else been on this merry-go-round. I want to get off now...

[sciqueen]

Hi Rab

the l is for leflunomide (arava) a dmard, similar to mtx.

Ra unfortunately can be like that, until they find a combination of drugs that suit you and give you a reasonable standard of life.

Me personnaly I try to limit how much they give me or you could end up with loads of pills to pop in the morning and you don't really feel much better when you was popping less!

Generally most not all peps do best on combination therapy (2 or 3 dmards) at once, it takes a while to get use to the side affects, but once through the horrible bit, you should start to notice a benefit. Perseverance is what needed, so don't give up.

Good luck

Sci x

[rab333 in reply to sciqueen]

Hi Sci

You're correct, it is leflunomide...I will persevere but just feel frustrated ( i know that's a common theme) that since starting Humira I have had less symptom control and had to increase analgesia from Co-codamol 30/500 to Tramadol. Also had 4 weeks off work. I don't expect to feel "normal " again but just hoping for something that gives a measure of relief so I can carry on with work and play etc...I had a kenalog injection in clinic last week and feel good at the moment but just know from experience it will wear off and I end up on that downward spiral till these new drugs kick in ...

[helixhelix]

Hi there,

If this is a merry-go-round then it's not a very merry one! But unfortunately it's not one we can get off..... sorry. I'm sero-neg too, and my Rheumy doc told me that whilst sero-positive people often had more aggressive RA, it was often more difficult to get sero-neg under control as more slippery. It's certainly taken a while for me & not quite sure I'm there yet and I'm 2+ years too.

But I'm still hoping/planning to get this under control and achieve remission. I can't offer any real advice except to try to hang in there. I've learnt that you have to think long term with this disease, so I focus on the fact that I'm better than I was 9 months ago rather than just thinking about last week. And also I've sort of come to terms with the fact that there isn't a magic pill that will make it go away. Instead I've got boxes of the ^%&**'s, and I'm now finally seeing benefits of being on 3 DMARDS.

So perservere with Humira & Leflunomide, and that new man with pain free joints will be along soon. Until then, hot showers are the only thing that get my joints moving every morning. Good luck.

[rab333 in reply to helixhelix]

Hi HH

Thats helpful to know about sero-neg...it will help me stick in with the programme...I just seem to take one step forward and two back with treatment so don't see any progress in that area at the minute...

[Judi]

Hi Rab,

I've read somewhere that the blood inflammatory markers can sometimes take a time to catch up with the pain and stiffness.

I did try Humira but stopped taking it as it didn't agree with me. I am now on Rituximab.

If the 'L' medication is Leflunamide it does take a while to start working - I realised after a couple of months that some of the swelling in my hands and fingers had gone down.

Hope this helps

Judi

[rab333 in reply to Judi]

Hi Judi

Thats interesting about inflammatory markers catch up time...I was beginning to think I was going mental and it was all in my head...what was your particular problem with Humira...it hasn't bothered me yet but just not helping either...infact began to feel I was going backwards....

[Judi]

Hi, I had a problem with sciatica in my right leg which was very painful (and I still have it). It started after my 3rd injection. Looking on NRAS site It is now listed as a possible side effect - the paperwork was amended January or February this year. It is of course possible that I was going to suffer with sciatica anyway, who knows.

It does help loads of people, just not me unfortunately.

I hope it starts to work better for you.

Judi

[swoodge]

Hi i too have had this for a couple of years and am sero negative. I've been on methotrexate from the beginning after trying Sulfasalzine (horrendous headaches) lefluomide ( did nothing but made me very jumpy) had a huge amount of steroid to get off of to start with which apart from making me fatter ( thanks for that one) so i had the typical Moon face and Buffalo Hump - yes we really need these sort of names for a fat face and a lump at the back of our necks, i was given all sorts of things to try before i could go on the magic Anti-TNF drug Humira which after a while did work for me so i was in remission for a good 18 months almost back to normal!!! Then i got a rash across my feet and ankles and then swollen calves and feet (oedema) After a lot of testing and misdiagnosis It was decided it was a reaction to the Humira and i was taken off it so i am now back to the beginning again and fighting to go back on another one back to a DAS score of 5.97 and only on Tramadol for pain and lots of hot water to ease the achey joints. Still on methotrexate which i think is helpful but really want to go back on an Anti TNF as i was so well on it and got to a DAS score of 2!!! I hope you persevere and get to a good place with it all. Yes sero neg people do get it more severely.

[rab333 in reply to swoodge]

Hi Swoodge

Sorry to hear you are having such a rough time...this is the most frustrating part I think...we all accept that we have a chronic incurable condition but just need something that will ease the symptoms on a consistent level but it appears that some of these meds work for a time and just when you feel settled they stop working or there is an unwanted side effect...