Does anyone else feel like they are swimming through treacle in order to get the right treatment for ra

Does anyone else feel like they are having to wait for what seems like forever to receive a treatment that works and easy ra.

On my last visit to the rheumatologist he said he wanted more ultrasound scans to see where he goes next with my treatment. I am currently taking methrotrexate 25 mg, sulphsalazine, hydrochloriquine. Pregablin, anitriptaline and tramadol for my treatment for ra, osteoarthritis and fibromyalgia.i have been on most of the treatment since august 2012. The sulphasalasine was added in Jan 2013.On my January visit the rheumatologist didn't want to give me a steroid, he wanted to see how I responded to the sulphasalazine. On my April visit he didn't want to give me a steroid as it would dampen things down until I had the scan in two weeks. I'm still waiting and I am in agony I phoned the rheumatology nurses and they couldn't see a referral for a scan. I feel like crying before you know it I will be half way through another year again just getting nowhere infact worse. On the last two visits the rheumatologist spoke about the next step trying biological drugs but there is a certain criteria I have to meet before I can go on this treatment.

Do all rheumatologist have such a lengthy waiting list, when I rung to see about the scan the secretary informed me the clinic was running 7 months behind schedule I. am feeling so frustrated with the whole system.

I also asked my rheumatologist last may to support me with applying for ill health retirement which he was happy to do due to being finished on the grounds of incapability. I'm still waiting for him to send this back to me, when I asked on the last visit he was surprised I hadn't received it he thought his secretary had sent it on to me. I left him another form.!!!

Sorry for rambling on I just don't know how long more I can go on in this pain and feel nobody is listening.

thanks for listening to my moan

take care love Carolineo xx

12 Replies

  • Hi it really tuff going this RA business. From what you have said it seems things are less then ok.

    If you want to moan go ahead i did yesterday made me feel better. Hope you do to. Think your consultant might be recommending tnf for you. To get these drugs you have to score very high inflammation in the blood. Sorry not sure on the actual number am sure someone will know.

    Would it be possible to keep phoning your consultant pa to make sure its filled in and posted to were it needs to be?( form that is)

    Rheumatologist departments seem very busy to me almost chaotic!! Think you will have to be quite persistent.

    As for the steroid jab this will make you look better then you are. Which is a no no for meeting the criteria for the tnf. I hope i have been some help for you.xx

  • moan all you like , this is the only place anyone listens, i speak for everyone on here . ay GUYS !!***

    sending you gentle hugs and hoping you get some relief very soon xx

  • Keep pushing for the biologic drugs and flagging up that you are still in terrible pain despite 3 DMARDs to maximum dose plus. Its not right that we have to flag things up of course but that is the reality for many of us in today's NHS it seems. I really hope things improve for you very soon indeed. Tilda xx

  • Carolineo, keep ringing your rheumy team until you get some results. I know exactly what your feeling as i am going through the same. I have had all the bloods,x-rays and the assessment done now just waiting for the drug to come through and as they cost £1,000 and injection i can see they will hold of as long as possible. You don't say how long you have had ra,i have had it for ten years and i now have the good old fibro to match as well.

    Keep ringing until you get some answers/or help. I hope you soon get some answers. xxx

  • Sounds typical your situation caroline mirrors my own.. they have no idea the effect it has on us on our lives.. a vet wouldnt leave a cat or dug suffering but a rheumatologist does!!

  • Good morning, my heart goes out to you and I totally understand how you feel. My RA consultant (apparently one of the best in the country) first put me on ad hoc steroids and the only thing I got from it was weight gain and more pain. Then methotrexate and left me on it for over a year. Enough was enough and I stopped taking them. As there is only one consultant and one nurse and huge amounts of people using their services appointments are few and far between and I am left to get on with it. Persevere for as long as you can and if you can get to your rheumatology department go and demand to be seen and to be heard. Take a book, water, something to eat and just sit, refuse to go until someone see's you and I in the meantime will wish you all the luck in the world and of course good health. It is a sorry state of affairs that we are reduced to doing these type of things, I did it and it worked for me.

  • I am the same but now on rituxmab which seems to take at least 3/4 months to find out if it works. I just failed dmard number 6, my rhumy rang me up ( shock) to see how I am, told me to hang in there for another month to see if any improvement , but no to steroids because they will cover up what is/is not happening. So another month crawling through the fog and pain. No I would not let my cat suffer this! I think your das score has to be over 5.1 mine is 5.76, to qualify for biologics, mine is mostly on swollen joints not blood reasults.

  • Forgot to say, keep in touch with your rhumy nurse, mine has helped me a lot to push things along, still slow but I am being checked every three months not the eight month appointments that the hospital gave. I am on my second biologic drug but I have never had an ultra sound scan only X-rays but my joints are visibility swollen.

  • Carolineo, please don't feel guilty for going on. This seems to me to be the only place where you can talk about your disease and condition where people listen and respond in a non patronising and non condescending way. I always wonder how these rheumatologist would behave and react if they were suffering the pain and disability rather than just prodding swollen joints or looking at numbers on blood results.

    The depressing thing us that to get the right treatment you will have to expend energy and fight for it. My rheumatologist told me to write letters of complaint to the NHS ( but didn't say where in NHS) and also told me to write to pharma companies to see if they would help..(.like they would ever just hand drugs out). The most distressing thing is that treatment on mainland Europe is far better and they seem to give biologics more readily than here.

  • We all know how you are suffering. It took me nearly 18 months before I finally got on biologicals. I have now been on them for 14 months and I still haven't found one that works. But unlike you I'm very very lucky in that I have a great rheumy team. There are certain criteria that they have to follow to get funding...... In other words, loads of red tape.

    The NHS does its best with what it has. In the mean time we are trying to get through our day as best we can. I was in a bit of a bad way this morning....I got up early, put the dogs out in the garden (it has stopped raining at last) closed the door, took my meds and went back to bed.....I stayed there until midday......I just didn't want to face another day feeling like this.

    Carolineo, we are all with you in pain and in spirit. Chin up girl! XXX

  • Hi sorry you are feeling so crappy i only know to well how you are feeling sadly, as so do all the others on this site it is the one place you can rant and rave and not be judged.

    I went through hell before my consultant sat up and listened to me !! Sadly i had to go in there no make up on nor my underwear on (lol not through choice but because my hands were locked/ swollen/ painful and i couldn't physically dress without help). Then i had to burst into tears something i don't do lightly as i like to think of my self as a strong person. I also told them they wouldn't treat an animal they way i was treated !!! After that my consultant put me on anti TNFS. However its along road until you actually receive them. I had to go through x rays, lung function tests, Hiv tests and a TB test. once passing all theses tests i was given the all clear, sadly i have tried Enbrel which for the first five weeks i had my old life back but have now had to stop the Enbrel due to side affects and now waiting for my next appointment to see whats next !! It's never easy this road which we all have to walk so hang on in there put the cards on the table tell them how it is for you !! Gentle hugs wishing you well.



  • Caroloneo,

    I have had most of the drugs you mentioned. My RA was diagnosed in 2001 (but the pains were present since 1997 and I did not do anything about it due to work). None of the drugs worked after a while then I was recommended for the biologic drugs in 2009 and had passed all the criteria required. At the time I was working in Brazil and had a very good Brazilian RA doctor. Since been on the biologic drug (there are a few) my life turned round. I had to give up my job in 2004 but did not give in and decided to go back to college and study IT. I was then 58. The biologic treatment is good but it can also be dangerous. No doubt your doctor will explain it to you if and when you taking this drug. My experience of the NHS system here is not good and lately my GP referred the wrong patient to the RA clinic. Then the RA doctor did not inform biologics that I was desperate for my injections as they ran out. But, there are a few very helpful and caring people in the system and I discovered you have to chase after what you want. I have lived in other countries and am back here now and I must say that the standards have dropped. Good luck. Sorry about the pain. I know what it is like - pain, fever, fatigue and unable to do much.

    Ciao. Margot11

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