Are my expectations too high?

[Oscardoggy]

I was diagnosed 15 months ago. I was started on prednisolone then added methotrexate then sulfasalazine then abatacept. I am now taking all four plus co codamol and naproxen occasionally. I would have expected to be able to function but my hands are still very stiff and painful and am very fatigued. I have had to give up my job because I can no longer meet the demands. Is this as good as it gets or are my expectations too high???

[Boxerlady]

I'd say that you're right to aim higher as it sounds like your RA isn't yet controlled. Time to contact your rheumy team and ask for a review; they'll just assume that everything is fine unless you tell them otherwise. At my recent appointment with the consultant, he noticed that my wrist was slightly swollen and sore and when I said that I hadn't expected him to think that it was serious enough to comment on (I'm coping with it by wearing a brace at night but don't need pain relief) he said that the aim was that I should be pain-free!

[Oscardoggy in reply to Boxerlady]

Thank you Boxerlady. I have an appointment with the rheumy nurse in March but will ring the helpline and hopefully bring it forward. I have forgotten what it’s like to be pain free. Oh to be be pain free would change my life completely xx

[AgedCrone]

You should ask for a prescription review if you really aren’t feeling any improvement at all.Unfortunately with RA it can take a long time……a couple of years is not unusual ….to find the exact type of medication & the dose that you need.So no …..how you are feeling now is not as good as it gets..,but you do need patience I’m afraid.

So do try to get an appointment with your rheumy nurse so that she can get a review organised asap.

[MrsSBJ]

It’s certainly worth asking your team. I sympathise and felt much the same for a long time. I have also reduced my work. I had an ultrasound scan of my hands and wrists 14 months after diagnosis (and being on Methotrexate, hydroxychloroquine and Etanercept for 6months as well as reducing dose of steroid). Despite still having pain and stiffness, the scan didn’t show active inflammation and no joint damage. After another talk with the rheumatology nurse, I was offered to change to JAK inhibitor, but they were worried about high cholesterol (over 8). However, both the nurse and rheumatologist said that, as I have sero-negative disease it’s very difficult to know if the new drug would be better than the anti-TNF. By then I was feeling a bit more settled so I opted not to change. I’ve now been on Etanercept for 10 months. I do feel that I’m going in the right direction. Sorry that is a long reply, but I hope my experience might encourage you. It’s the most difficult question, I think!!

[MrsSBJ]

A second response to you. It might also depend how long you have had Abatacept? Certainly Etanercept took it’s time for me. Slow improvement only in 3-6 months, but more benefit after 6 months is apparent now.

[Hidden]

Morning. It took two years for me, before all the meds kicked in; and another two to get back on my feet. Also, despite being very upset about it at the time, ‘medical retirement’ did me the world of good. Bye bye stress. It was/is stress that affects my mobility/ dexterity the most. I take amitriptyline to help me sleep more soundly; that helps as I can get proper rest now (20mg @ 7pm). It’s harsh, just try not to put too much pressure on yourself. Also, I would contact IAPTS to get some Mental Health support. It’s tough ☹️. I am 11 years in and ok. It's a horrible learning curve. Pace and rest/ don’t give yourself lists and then beat yourself up for not finishing them/ eat as healthily as you can/ DO NOT forgo treats x

[PSAWarrior28 in reply to Hidden]

Its useful reading this advice. I kept setting dates for when I felt I should be better and when that date arrived, I went into deep depression. I'm trying to just focus on now and how I'm feeling. Its hard 😏

[Hidden in reply to PSAWarrior28]

Day at a time is all you can do. Celebrate when you feel ok. Remember not to beat yourself up if you’re poorly. You have a chronic disease ☹️.

[Hidden]

If your expectations are too high, then so are mine. I went undiagnosed for a decade until being told likely PsA with spinal involvement Jan of 2020, and in terms of my joints I’m worse off than ever. At no point in the last two years have I been controlled (although I was off all meds except steroid courses for 6 months last year due to liver issues), involvement is spreading, and I now have permanent damage and deformity. In terms of meds, though, it sounds like the difference in our situations is that they haven’t just kept giving me the same stuff in the hopes that it’ll eventually work: I’ve been on Imraldi for 23 weeks, alongside lef for the last 11, with no change, so we’re now looking at what to switch to next. Have you spoken to your team about the situation? How long have you been on the abatacept with no improvement?

I’m not expecting not to be in pain, in part because of the deformity and OA that’s set in in some places. The same with stiffness, I know that some joints are going to remain stiff now even when not uncontrolled or flaring. I do expect for things to be better than this eventually, though, and I don’t think that’s unreasonable or impossible. It’s just a case of finding the right drugs, and unfortunately, for some of us, that takes a longer time than anyone would want.

[oldtimer2]

Definitely aim for better control!I have been absolutely amazed at the difference. After many years of not being eligible (just) for biologics and now the criteria have changed I am (hooray). So I started on adalimumab in November and I have never had such pain-free joints (despite the secondary OA). I have even stopped feeling as if I have a low grade infection all the time - and I hadn't realsied that I felt like that, just got used to it.

[Oscardoggy]

Thank you for all your replies. Lots of encouragement here. It has made me realise that I am not alone and people do understand, but not all people do of coarse. My husband has been very supportive but some friends seem to think I have ‘a bit of arthritis’ and I am malingering or lazy which of coarse is not the case at all.Reading all these replies I think perhaps I am expecting too much too soon. I have been on Abatacept for 3 months and I have reduced the Prednisolone from 20mgs to 7.5 mgs.

I think the plan is to see my rheumy team and take each day as it comes rather than expecting to be able to do something and then getting upset when I can’t.

Thank you for all your responses. x

[Tired-fed-up]

It’s a long journey, and it’s really tough. I’m on year 3 now, only feel good when I’m on steroids, but after having a stress fracture that wouldn’t heal they are very reluctant to give me pred now. Every time I talk to the rheumy he’ll talk about “having a flare”. Ha! I’ve been having a flare for 3 years. Keep talking, asking, and trying different meds until you find something that works. Believe that it can improve but I think acceptance is important too. I’m sorry it’s so hard and I can’t offer any real help, good luck!!

[Retirednhs]

Hello l personally would not be happy at this stage of treatment if l had your circumstances, it is obviously not a flare you are experiencing . I would use the helpline at your hospital and explain your symptoms are not responding to your treatment and how ill you feel loss of your job due to this . I know appointments are hard to have nowadays but no one should still be suffering like you are if your Meds were right for you . If no help then see your gp and ask for a letter to be sent to the consultant about your present situation. I hope this is of some help and please feel free to let me know how you get on

Bet of luck

[Oscardoggy in reply to Retirednhs]

Hi. Latest update. I saw my rheumy nurse yesterday who agreed that my expectations were not too high and I should be feeling much better at this stage of treatment. My case has now got to go back to the MDT in the hope of changing the biologic. Meanwhile she has increased the prednisolone to 10mgs to enable me to at least function. She says there is light at the end of the tunnel but I don't think it's been switched on yet. Here's hoping.x

[Boxerlady in reply to Oscardoggy]

That's great news - the first step and hopefully only upwards from here on 🤞🍀😊

[Deeb1764]

Keep a diary of timelines as it will get muddling and yes it can take time I am on week 10 of Baritcitnib without coming off it for antibiotics so it can take time. 13weeks is normal to wait BUT it can be more and is dependent on side effects as well. I am 3 years in and have 4 auto immune diagnosed and it takes time to sort each one as they creep up on me. BUT you have to try sometimes to sort the pain then wait for the RA drugs to kick in. Keep talking to your RA team to get you thro the bad patches