Painful fingers crossed: Well it’s been a not so smooth... - NRAS

NRAS
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Painful fingers crossed

Longlocks
Longlocks

Well it’s been a not so smooth ride so far. I was diagnosed with aggressive seropositive RA back in August (very quickly too 👍). Had a blood test and there was some concern over my neutrophil levels being way too low, so, a bone marrow biopsy’s and several other tests later it was decided that it’s just me. Was put on MTX and Hydroxy and folic acid. 5 weeks later (nov/dec 2019) was told to come off meds as neutrophils went down to 0.3.

I’ve been off any medication since then and gradually over the last few weeks my hands/shoulders/wrists and elbows have got worse and worse. I’m a self employed hairdresser so not good.

Finally I have my appt with my Rheumy Doc who is ACE and I arrived with claw hands as I couldn’t straighten my fingers. He gave me a steroid jab and has informed me that the next plan is to have a self injected drug called ‘Etanercept’ so now waiting for a nurse to call and give me a lesson on how to do it all.

So that’s me and my journey so far. I’ve got to admit I think from the stories I read I’m extremely lucky. I have been well looked after at the Nuffield in Oxford and have nothing but praise for everyone I’ve seen. (Hopefully I’ve not spoken too soon lol)

Stay well,happy and as pain free as possible all xx

8 Replies
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Poor you ... you do have a a good Rheumy. Your starting a Biologic very quickly. I’m on elerzi a biosimilar of etanercept . Within a month saw great improvement.... but!!! always a but I’ve a chest infection at the moment so have had to hold fire until it/ if it clears. Hope you do well on it.

Hope all goes well for you.

Sounds like you are getting great care. Ensure they carry out the necessary blood screenings to check for any underlying infections ( such as TB, HIV, Hep B etc) before the Biosimilar can start. Your Rheumatologist will need to apply for funding for the Biosimilar too so be aware it can take some weeks for all this to fall into place. Hope it works well for you.

Longlocks
Longlocks
in reply to Deniseelk

They apparently did all relevant blood tests back in August and a chest X-ray. He said about funding and that it takes a couple of weeks so hopefully it won’t be long. Also because I’m ‘unusual’ he’s used my case to talk about on some sort of panel so maybe I won’t fall through the cracks quite so easily. Thanks for the advice x

I used to go to the Nuffield and was looked after well. Keep up the pressure on them if the meds aren’t working, there’s a lot of quite new ones available.

Great to see your getting great care,hopefully new drug works well xxx

I also started out on the three drugs you are currently taking, however I came off Hydroxy as it was affecting my eyes. Now on Methotrexate injections, Folic Acid & Benepali which is the Biosimilar for Etanercept (much cheaper to make). Have been on this for nearly 2 years now and can’t believe the difference. My specialist nurse said ‘if it works it’ll give you your life back’ and it has. I do worry a bit about picking up infections and think lots of people don’t understand that you’re quite vulnerable because of the drugs. However life is for living so it’s worth that risk to be pain free! Good luck I hope it works for you 😊

I felt so much better yesterday but today I’ve gone backwards again and can’t move my fingers on my left hand they almost feel like they’re broken and I can’t straighten them it’s sooooo painful. My right hand is better but still very sore and stiff. I feel so useless, never mind hopefully tomorrow it will be better. Boy it’s a rollercoaster this bloody disease 😳😬

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