rant day again!!! sorry in advance meds not working

got steriod injection 19th of this month after trying for over a week, it seemed to do the trick. wrong pain and swelling back with a vegence again trying to get appointment with my rhuemy to no avail it seems to me if you have had RA for longer than ten years you get put on back burner. i keep telling them leflumomide and hydroquoliquine not working now had methotrexate sulphasalizine etc but bloods FINE ok but pain isnt thinking of going to private rhuemy to see if weekly/ daily injections would work for me as my answer from either doctor or rhuemy is if you have had RA for more than 5years it is not going to make a significant diffrence. has anyone else tried these and did they help

23 Replies

  • i feel the same ...last couple of years they seem to have forgotten about me...have been housebound with pain and fatigue but as most of the drugs theyve tried havent worked they seem to have gven up...they occasionally give me steroid injections but they to have little effect now...so frustrated...my rant over lolx

  • hi kizzy sorry to hear your in lots of pain as well.... i am getting really frustrated now as well at the nhs and rhuematology i just wish they would listen to us and give us a try with something diffrent that works for a long time or even a short time, and remember even though weve had it years we would still like a semi normal life.PHEW.... hope you get a few pain free days soon xx

  • Can I be really bold and ask. If you took no meds how would it be dif. ? I am forced to have no meds as reaction to steriod but me in hospital and any meds I've tried make me to ill, my body will not do tablets.

  • I've been off meds and allmy symptoms have come back with a vengeance

  • Oh Cathie, just catching up, feel so sad for you as you were so well. Hugs xx

  • oh cathie sorry to hear your unwell again i hope you feel better soon xx

  • I could tolerate them ok, but drs thought I was in remission. I fought it but I've been off meds since jan. now they're satisfied that I need anti tnf and I'm waiting for enbrel. It's been a bit of a struggle

  • im sorry you cant tolerate meds didnt mean to upset anyone who is in this unfortunate position. hope you get something soon that does agree with you.

  • replied to you by mistake about tolerating meds it wasnt meant for you but glad your getting enbrel and

  • sorry to hear you cant tolerate meds. didnt mean to upset anyone. im in constant pain with meds and dont feel there working now and cant see any point in taking all thes strong meds when they are not working for me anymore. i hope you get something that does work for you and that you can take xx

  • I really feel for you. 10+ years of RA.I've been off meds since beginning of year, dr said I was in remission. 8 week wait in pain and fatigue for MRI scan. This proved to their satisfaction that I did have inflammation and I'm now waiting for embrel, unsure of how long I'll have to wait. Just supported for pred which isn't good for blood sugars.

    I'm going to ask NRAS if they can find out if cuts are affecting us in a systematic way. One clue is that guidelines for nhs talks about newly diagnosed rather than people suffering long term. This forum can help us collect some info on this

  • hi cathie like you my RA is constantly active my rhuemy has told me this. i would also like to know if the cuts are affecting long suffering RA patients. if so why? i have been out of action again for a couple of days but now feeling ready to do some research on numbers/figures will let you know if i turn anything up. hope you get sorted out soon with meds cathie xx

  • I don't know the answer but hoping things improve soon xx

  • Thanks. I've now got a date, 23 April for grand initiation into embrel. Let's hope it works!

  • Me too sweetiexx

  • Thankyou. I'm beginning to be alert to people with infections! It's been nearly 4 months. My husband has learnt a lot of cooking!

  • evertthing crossed for you cathie good luck xx

  • Thankyou

  • hello, I would just like to add my voice to say I was in a similar position (low ESR, bloods really normal on methotrexate and hydroxy plus anti-inflams and occasional steroid injections). I had to practically beg for scans (ultrasound) on my hands and feet to prove to rheumatology that the inflammation was there. When the scan results showed it was, I was finally listened to and put forward for Cimzia. One week after my first Cimzia injections I don't feel much different but think my tendonitis in my foot might be easing a little. It's sad to say but I have had to really take firm control of my treatment and pester but once the scans results came back, I was treated quite differently and things moved quickly. Good luck in moving to a more effective treatment for you.

  • thank you annie lou i hope the new meds work for you and you feel well soon. i like you now need to get tough on the rhuematologist when i see her again 2015 every 2 years i see the RA nurse in the inbetween years. so wish me luck as im about to bang the drum. xx

  • If I were you I'd phone and request an urgent appointment - if they fib you off, phone PALS, you'll be pretty sure to get one then. The nurse who came to supervise my first Cimzia jabs admitted 'it's all about cost' re anti-tnf meds. Just off to read an article on Cimzia in today's Daily Mail online version. Good luck!

  • I'd be interested to know where you are. I'm in Scotland, but was diagnosed in England in a different hospital. That may have affected things because they'd not gone through the diagnosis with me, but started to question it after about 4 years. There was also use of MRI scan which made me wait about 8 weeks. Now I'm on steroids which ain't good, til end of month when I get embril. I think the cuts might be involved.

  • Really hope Enbrel helps you Cathie. It took 6 months for the scans and follow up appointments with rheumatology to materialise but once they did, things moved quite quickly with the Cimzia. I'm in the Midlands, Staffs.

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