RA and working

I work part time (24hrs a week over 4 days a week) and have 2 young children. I take Sulfasalazine and Methotrexate and have just stopped prednisolone. My ESR is still at 44, my blood results are all over the place and I am in pain from the moment I wake up to the moment I go to bed. My Rheumatologist is useless but my GP is brilliant at keeping me together. I am about to request a change in Consultant as I've been on my current regime since September with no visible change physically or in my blood results.Even though work has been so supportive, I'm finding it harder and harder to get out of bed and actually function (I'm a scientist in a lab). I really can't afford to not work for financial reasons and for my own sanity. My GP reckons I will feel a lot better and able to function if Rheumatology can get their act togther and get me a treatment that works. What is the best thing to do? Take an extended sick break or leave?

18 Replies

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  • Morning - sorry to hear things haven't improved yet. Personally, I think it's still early days for you: I had to take 6 months of work at the beginning of my journey and then had a phased return. Hang on in there - it takes time. Don't be so hard on yourself and try to get something to help in the meantime maybe such as a steroid injection which your GP can administer.

  • I have had 3 x 80mg infra muscular steroids as well as the oral tabs. With no visible effects. I have a medical background and this current job is already miles below where I should be operating. I took it so I can still work, be there for my family and keep my knowledge and mind utilised. I'm not being hard on myself but I know how medicine works and there should no be such a lapse of time from diagnosis and calling it quits when something doesn't work. I've had a second opinion who told me that I should have been moved on to another regime if after 6 months there was no improvement and my blood results have never improved. My Rheumatologist thinks because I seem to be managing to hold down a job, look after my family, run my business etc, I'm ok despite my blood and myself telling him otherwise😡.

  • Hi jaydeeM

    Sorry to hear that you're feeling so poorly. It's a difficult time before identifying the treatment regime that works. I remember it well.

    I am a social worker in a busy city children and families team and there have been times, like you, were I felt that I might not be able to continue.

    However, at my worst I was supported by work in taking a period of sick leave. I initially was off for 6 months. This allowed for me to try different meds, find what worked and give it time to settle in before returning.

    I went back to work thereafter on a phAsed return and to a work place assessment where I was provided with practical changes to Support me when in the office.

    I didn't want to and couldn't afford to just give up work so this worked well. I think if you can do this, then this may be the best scenario and may support you continuing in your post?

    I do wish you the very best going forward.

    Marie

  • I don't think this will be an option for me. The lab would have to get someone in to do my job and in this age of budget cuts, I think I would get my hours cut even more. Also, the very thought of sitting at home waiting for mess to work etc, would drive me crazy and, I think, do more harm than good.

  • If you are not happy with your rheumy then you could ask your gp about a second opinion. A friend wasn't happy with her doc and I recommended mine and she did get changed and it has made a real difference to her treatment . It may be worth doing some research to get some recommendations first . A doctor you trust makes such a difference , best wishes 🌸

  • My GP has written to my current Rheumatologist and we are waiting for a response. As it's the NHS who knows how long a response will take. I have friends at the hospital where I attend and asked them for their professional opinion of the Consultants who are there.

  • I've had 3 x 80mg intramuscular in addition to oral steroids which has had no effect. I should also admit to having a medical background. This current job is quite a few steps back for me in order to keep working as I couldn't function at my usual job.

  • There is a research study by kings college hospital at the moment. The study has 2 arms standard stay as you are with consultant & GP or intensive arm for intensive treatment over the next year with monthly reviews.

    I was in almost on maximum therapy with moderate disease activity DAS 4.5 not high enough for biologics. My consultant put me forward for this and I have been randomly chosen for the intensive arm.

    I just whether your consultant knows about this study and would put you forward.

  • To be brutal, it feels as there is quite a lot my Consultant doesn't know. My DAS is 5.8 so not sure what else I need to do to prove my suitability for better and more effective treatment.

  • It's higher than 5.1 so according to the Nice guidelines you are ellegible for biologics (excuse my spelling)

    Maybe a change in consultant is the answer as you must be in a lot of discomfort with a score as high as 5.8

    All the best x

  • Thank you. I only found out how high my score was because I demanded a copy of a letter he sent to my GP. I'm desperately uncomfortable and in pain but according to him, he is not allowed to give my biologics as he has to try "traditional routes" first. So fed up really. Thank you for your reply.x

  • Unfortunately you have to have tried 3 Dmards & had no benefit from them before your Rheumatlogist can apply for funding for Biologics,

    If you have not tried three...push him to change whatever Dmard you are on to get you over the hurdle.

    As you are finding...... if you aren't really proactive with RA you get lost in the system.

    Hope you get sorted soon,

  • The meds do not seem to help. Have you thought about dietary modifications to get your inflammation down? The AIP diet as well as Wahls protocol and Paddison have in fact helped many where meds don't seem to work.

  • No I haven't and probably won't try it. I'm not convinced by holistic or dietary remedies. Thank you for your reply.

  • Good luck😊

  • On the right meds, you should be able to continue working, despite occasional flares. I have an aggressive form of RA that has destroyed all my joints. I managed to get through school with the disease and work for 22 years. I had bills to pay too, and quitting was never an option. Good luck, sort out your doctor and meds.

  • Sorry to hear you are having to struggle on for so long. Unfortunately this seems to be the way things are done for RA. I too had to try 3 DMARDS before they started me on biologics. This was 12 months later and desperate for something to work. I work 25 hrs a week and going off sick or taking time off was and never is an option. A 6 month break for most people is sadly not always realistic & with bills to pay I couldn't. Like the other person suggested I would push to try another DMARD so you can get the ball rolling to get on biologics sooner. Hope all goes well for you & keep your chin up. X

  • Thank you for all your comments. I'm waiting to hear if the Rheumatologist will see me earlier. But, sadly, I was diagnosed with a stomach ulcer this morning (thanks Prednisolone!) and will have to miss my Methotrexate dose today. Honestly, I'm so fed up that I'm almost prepared to go see a Private Rheumatologist. This is ridiculous.

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