Newbie - advice about work please!

[Emmybear]

Hello everyone,

I was newly diagnosed two weeks ago with RA. I started prednisolone 20mg tablets and have had a good response. The swelling and stiffness are much better, but I'm still getting quite a lot of pain, especially in my hands and feet. I'm starting methotrexate next week.

I'm been off work for five weeks now in total. (My joints really flared up when I stopped my naproxen for my MRI which helped make the diagnosis as I'm seronegative).

I was advised by the rheumatologist to stay off work until I see him next week as I had a lot of joint inflammation but I'm wondering how how people stayed off for at the start? I don't feel I could go back yet as I'm still in quite a lot of pain and am not sleeping much with the steroids. I know that the methotrexate won't work for several weeks but I will have the steroids tapered I think.

Work are being supportive so am very lucky but I want to go back when I can and I'm the sort of person who always feels better with a plan if you know what I mean!

Thanks 😀

[Anitasmith]

I know very hard combined work and ra. I changed my work place and less hours. Still sometimes very hard to go work after bad night. Thinking to quit but same time not good for mentality... so I keep working halftime

[Emmybear in reply to Anitasmith]

Thanks for the reply. I completely agree about the mentality part. Obviously it's a personal thing and also depends on the severity etc, but I feel for me that I'd like to keep working if possible long term and I'm still hoping that I'll get all my symptoms under control eventually.

I'm just struggling with do I go back to work and accept that I'll be in lots of pain or is it better to wait longer and feel better before going back. Tricky - will ask the doctor for advice next week too but really helpful to get people's thoughts.

Very best wishes for you being able to continue in your new job for as long as you want to.

[Jules13]

I was diagnosed eight weeks ago and I've been off work for five weeks. I'm on hydroxychloroquine and sulphasalazine and steroids and it's taken this long for them to have any effect whatsoever. I'm still not able to work but the pain is easier and the inflammation is better. I'm hoping to go back to work in a few weeks time only a day or so in the first few weeks to see how I manage.

My RA has gone into my hands and wrists first unfortunately and I'm an artist and designer so it's physically impossible for me to work.

[Emmybear in reply to Jules13]

Thanks for your message and sorry to hear that it's taken a long time to start to respond to treatment.

I'm finding driving and typing painful but also struggling to concentrate with the pain at times - all things I'd need to do for work.

I really hope that things continue to improve for you and that you are soon able to use your hands again as obviously so key for your job (& life in general tbh!).

Thanks again for taking the time to reply.

[Jules13 in reply to Emmybear]

No problem. Anytime. Xxxx

[Vonnie10]

I was diagnosed 20 months ago 2016 I struggled on with the help of steroid injection none of the first two lines of treatment worked for me except for steroids , I went of sick the end Feb 2017 until the beginning of may 2017 due to not having any medication Disgracefully left for a further two months for them to decide to put me on benepali (funding ) which isn't doing it's job either now waiting ritux infusion but I'm still at work nights shifts at the NHS nursing. It's hard but I cannot give in it to this ugly disease .

[Emmybear in reply to Vonnie10]

Thanks very much for replying Vonnie. It's helpful to hear other peoples experience.

Sorry to hear that you've had such a hard time. I really hope that the ritux works for you.

[Candy]

Hi, It took a long while for GP’s to take me seriously and therefore get a diagnosis and referred to Rheumatology, so was off sick from work two months before diagnosis. It took four months after this for treatment to enable me back to work fully. I did return to work twice within this time, but failed due to not being fully fit. This affected my confidence, but like you had a good and understanding boss and employer. The rheumatologist did advise against work whilst inflammation was high as this can cause damage to the joints affected. It is difficult to plan, so I would say, be patient with yourself and be guided by your rheumatologist and your symptoms. Hope things improve for you soon. Take care.

[Jules13 in reply to Candy]

The confidence to go back to work is what I'm strstruggling with as well. I know that I could possibly do a day or two in a few weeks time but the idea of then getting to work and doing a poor job, all being in pain for eight hours, fills me with horror.

[Candy in reply to Jules13]

Hi Jules13, On a sick note now there are options for your GP to indicate how you transition back into the work environment. I’m aware of this as my husband recently needed to do this. He went back for 4hours a day and I think it can be tailored to what you need. You could speak with your GP about it when you feel you are ready. It is hard when you’ve been off a long time. Take care.

[Jules13 in reply to Candy]

My sick note has advised 3 months off work which takes me to November 11th. But I still cannot survive on £77 a week. It's insane. My petrol costs more than that.

[Emmybear in reply to Candy]

Thanks so much Candy. My rheumatologist also said that I had to be off work until I saw him as with the high inflammation I could damage my joints. He said when I do go back will need to be 'phased return' which i think is what you suggested to Jules.

I don't think I can go back yet, still in too much pain, but really helpful to hear what others have been through. I may need longer than I thought. I can ask next week at my appointment and realise I'm so lucky with work being supportive, but still feel guilty! And I find the uncertainty hard. Pain/tiredness varying day to day, within the day even. I think this may be part of the adjustment for me if living with RA - not being able to plan!

Thanks again everyone for all the advice. This website is so helpful.