Should I just accept things will keep getting worse?

I was diagnosed three and a half years ago, in that time I have been prescribed at different times MTX, hydroxychloroquine, Leflunomide, Prednisolone, Steroid injections, Humira and Infliximab. Also in that time I have deteriorated steadily whatever was given to me. When I was diagnosed I had occasional sore swollen feet and occasional knee pain as well as dryness in my eyes and mouth and slight fatigue. Since then the pain and swelling has worked it's way into all my joints, I sleep nearly all the time. 18 months ago I lost my job but by that time I was reduced to minimal hours and not coping any more. I haven't been well enough to work since. Up to 2 years ago I was still doing 4 hours walks up on the moors, a year ago I was still doing 1 hour walks. I now have to walk with a stick even round the house (as of 3 months ago) and use a mobility scooter to get into town. The amount of painkillers I need to take has steadily increased too. I spend all day every day alone staring at the walls or sleeping, I have no life at all. I don't get flares, the pain is constant, every day.

Is this a normal course for the disease? Every time I see a rheumatologist I tell them my knees are getting worse and they don't take any notice, no x rays or scans or even a word about it, so am I just supposed to accept it is what will happen and there is nothing anyone can do? I thought being diagnosed early, which I was, was supposed to help halt the course of the disease. If it carries on like it is I will be in a wheelchair within a year. Nothing I take works, I just get bad side effects and none of the benefits.

16 Replies

  • Dogrose I haven't got any answers and am considerably luckier with my RD than you are so far. But I have now met quite a few people with our disease (s) and have spoken to those who have theirs well controlled with just a small dose of MTX and those who are, like you, still struggling terribly as things progress from bad to worse. The main thing I've noticed about the latter group is that eventually they do seem to find a drug which works like magic for them and I sincerely hope that this happens to you too.

    For what it's worth my rheumy team (if one distant rheumy and a couple of GPs who are mostly out of their depth can be described as a team!) never show me any concrete evidence that things are working or not. I've never had a joint examined by ultrasound, an MRI or CT or had my GP's diagnosis of secondary Raynaud's or Sjogren's confirmed. I had my hands and feet x-rayed once each since being diagnosed at the end of 2011 and no erosions found to date.

    So if I find it hard to except that I do need these drugs it is because no one seems interested in taking steps to confirm its existence beyond basic blood tests. And because I have had very little joint pain from it for over a year now, but much fatigue and unwellness and nerve pain, I find it baffling that I'm expected to keep on trying DMARDs that have so far made me pretty ill (tried three now). I just don't understand why they can't be more thorough in their investigations so that they can tailor the drugs they prescribe according to the direction our RD seems to be going in? If your knees are this painful they should be investigating this surely whether you are on the disease modifying drugs or not?

    I do understand that there really is no normal course for this disease because this disease is now thought to be a syndrome (many diseases) rather than one disease, so Belgium scientists have discovered according to Arthritis Research. When I sent the link for this new research to my GP, who is interested in such things, he commented that in ten years time patients with inflammatory diseases will probably have drugs tailored individually to their needs and prognosis's.

    For the time being all I can offer you is much sympathy and the hope that something will relieve your suffering very soon. Twitchy xx

  • Huge sympathy as sounds as if you're in a bad place right now. Your rheumy team sound like a bunch of wooden tops, with no empathy. Don't give up but perhaps get a bit more demanding with them? After all, both the biologics you've tried are anti-TNFs so maybe ask about trying the ones that target B cells or IL-6 as maybe these will be the magic ones for you as Twitchy says? I do hope you find something soon.

  • My story is similar to your. My advice is to do what I did, take someone with you to your next appointment. It was only when, after 3 and a half years, my hubby blurted out loudly , do you not know that we as a family are not coping, she's in agony And can't walk that they sat up and took notice. Hubby insisted on more tests as I too had tried loads of dmards, Remicade infusion, Enbrel, Humira all to no avail.

    I though then started to grow lumps too which hubby pointed out rather forcibly , you don't grow lumps for nothing!!

    so plethora of tests, scans , a three hour ultrasound of my hands, X-rays and eventually they came up with the diagnosis that I have a variant of rheumatoid arthritis but good news we can start you on an infusion of Abatacept and add mtx as well to the general mix of steroids, leflonamide and now Abatacept. Just been to see Rheumy and inflammation numbers have gone down, a bit, but maybe a twitchy says this might be the one or me?

    So for me, Dogrose, maybe go in and tell them how you feel strongly And ask for tests!! I really have found you have to be your own advocate with this illness ( and with the backup of my verbal hubby! ) xx good luck I hope you get sorted soon, ring the Rheumy nurse nd ask to talk to her?

  • I was only diagnosed a fortnight ago, I think I've had the disease for several years though but its still early days I work as a clinical psychologist so I'm living in the real world, I know I'm going to get worse its the natural progression of my disease I'm trying to get the Max out of every day and trying not to project I feel so sorry for you

  • Hi Stoneman - sorry you've been diagnosed with RA/RD. This disease can go many ways and not even realists or epidemiologists can be completely sure of the outcome. Many people do manage to get extremely good control through the drugs, drug induced remission even. So although it will probably get worse for most of us to an extent, it may not necessary get any worse than many other conditions and diseases do as we age.

  • I am in the same place has you it lonely painful and there is so much I don't understand hope you feel better soon this site is my life line good people here

  • Hi Dogrose,

    So sorry to hear how you are feeling :(

    It does seem to differ so much between people. I have had RA for two years and it is steadily getting worse even though I was given the impression initially that if I take MTX it will stop me feeling any worse.

    I think the Rheumatologists/Consultants should be more honest with us in the beginning so at least we know what to expect if the medication doesn't react the way we are promised!

    I do agree that the so called experts don't seem that interested in all our symptoms and only seem to be interested in certain parts of the body (my consultant seems to ignore my neck, shoulders and torso area but just seem to look at my hands and feet) - shouldn't they be looking at the whole picture?!

    There are helplines out there and this forum does seem to be very helpful to 'talk' to people in a similar position as yourself.

    I hope you find some kind of relief soon - Take care of yourself x

  • Thank you for all the replies. I'm not very good at speaking up for myself or asking for help, I have quite bad social anxiety. My Infliximab has pretty much failed the last two infusions and it has taken me literally two months to get the courage to call the Rheumatology helpline and tell them. I have an appointment next week with the nurse, I will have to go alone but I will write notes down first and hopefully have the courage to use them. xxx

  • Have you got anyone in your healthcare team whom you really trust who can speak up for you such as GP? Or would it be any easier to write things down diary form and send or email it to anyone who can act as your advocate perhaps? Twitchy x

  • I've just moved to a completely new area and have only seen my Rheumatologist once, and two different GPs once so no one I can trust or who even knows anything about me. I don't know who would act as an advocate or what the point of one would be? xx

  • The point would be to help you by speaking up for you and being your voice if you are too anxious socially to convey your problems and wishes then they could do this for you. But if you can't find anyone from your past then perhaps you need to find a GP you like enough to trust and explain what you have explained to us here.

  • Hello Dogrose, please ask the nurse to get some tests arranged via the rheumy as it's not right that you don't know what's going on. I recently asked for an MRI due to agonising pain in hips and knees and chose hips (I could only choose one) because they'd been hurting longer. It's awful that they haven't offered you anything despite the level of pain you're in. Surely there is a duty of care for the hospital to carry out diagnostic tests when a patient complains of severe pain? There must be another drug option that they could offer you. Maybe your GP could also be an advocate for better care on your behalf and ring your rheumatologist? Hang in there and take care x

  • So sorry that you are not feeling well. Just a thought, but if you could bring yourself to ring the helpline at the NRAS ( National Rheumatoid Arthritis Society). I spoke to them and they were absolutely brilliant. They gave me lots of advice and can put you in touch with someone local to support you. I know how hard it is to tell the nurse or consultant how bad you are feeling, as your confidence is so low when you are so worn down by this horrible disease.

    Best wishes, and good luck at your next appointment.

  • Thank you, I can't call the helpline :) xx

  • Dear Dogrose,

    So sorry to hear about how bad you are feeling. Thankfully you have had a lot of support from the people on this site and they have given you a lot of good advice. I appreciate that you may not feel up to calling the helpline at the present time, but just to let you know that we are here for you and if you do feel up to it in the future then please do call us on:

    0800 298 7650 Monday - Friday, 9.30am - 4.30pm

    Alternatively, you can also e-mail us on:

    If you are not happy with the way that you are being treated by your rheumatology consultant, you can always ask your GP to refer you for a second opinion. I have put the link to the NHS website on how to do this for you:

    I do hope that you get the help and support that you need to make you feel better soon. We can offer help and support in many areas. Take care.

    Best Wishes,

    Beverley (NRAS Helpline)

  • It is definitely a progressive disease but it's no excuse for those who are treating you not to show any empathy or monitor the progress of the disease. Unfortunately mine are pretty useless as well. Apart from getting drugs I get no help from them at all; no physiotherapy, no occupational therapy, no pain clinic, no empathy and the absolutely minimum of x-rays only very rarely and when I kick up a big fuss over not having any taken for over a decade.

    It seems Rheumatologists vary greatly up and down the country. In some areas people get lots of support in others like ours they do the absolute minimum possible and often have to be pushed even to do that.

    This of course is a false economy because without support and treatment, we are going to need hospitalization, wheelchairs, home adaptions, treatment for depression. Although with all the cuts we probably wouldn't get much of this either.

    If I won the lottery, the first thing I splashed out on wouldn't be a house or a holiday, it would be private treatment for my RA. I'll keep dreaming.

    But I am worried about you being alone all day, every day. Is there anyone who can come and visit you? Family, friends, ex-colleagues?

    You could try social services. I am not promising they will help but they at least have to assess you, and might put you in touch with some befriending services.

    As for the dryness in your eyes, have you had your eyes tested? It's really important, as you probably already know RA can cause swelling and damage to your eyes. I tell everyone this because even some GP's don't seem to know this!

    Keep posting Dogrose, we are all here for you xx

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