Will I get back to full-time work?

[Ruth-Louise]

Hullo

Long story short, I was diagnosed in June this year and started on Mtx. The tablets were a nightmare so moved into injections. They are better but I'm still having to take time off-sick for either nausea, fatigue or UTI (as now I'm even more sensitive than before -groan-). Because I hate being off-sick, and don't feel like I can give 100% over 5 days, I've agreed with my manager to drop down to 4 days and not work the day after I take Mtx (which is usually my worst day).

I'm worried I'm never going to get back to full-time. I LOVE my job and I'm devastated that I'm having dropping down but I feel like I don't have any other choice, otherwise I'm off-sick even more. Has anyone else had experience where they've had to reduce hours because of the side effects? As right now I felt like I was at work more *before* I started the treatment which quite frankly isn't making me feel like it's worthwhile at all.

Note: I'm in with the Consultant mid-Oct for my first medicine review and will be asking to change away from Mtx then, but also concerned that I'm going to get this with all meds

[notsochunky]

Hi Ruth-Louise I changed from Mtx to Leflunomide after six months. I have been taking it now for one month and don't have the terrible Mtx side effects any more. I am still not back to "normal "

yet though.

[Loura]

Hi ruth-louise. So sorry to hear you're having a bad time. Fingers crossed things will improve for you. All I can say is everyone is different. My own experience is one very similar to yours. I too decreased my working days in order to safeguard myself and my job. I also found it difficult to adjust. However, I have continued on reduced days for over three years and am really pleased I have done so. The time has allowed me recovery days and also helps with the exhaustion/fatigue. Try not to feel to you down about it if you can and think of it as a positive, that you can still do the job you love, but it also allows you to look after your health and wellbeing. Maybe fingers crossed, you may look at increasing your hours back, or maybe you'll love having that extra time.

[RA57]

Morning Ruth Louise like you I have reduced my hours I was diagnosed with RA July 2017 and was put on hydrox I was relatively stable on this until April this year when I had awful flare they added Mtx 2 months ago 10mg initially for 4 weeks now 15mg which I take Monday then 5mg on a Friday. At first I had a really bad stomach but things seem to have settled now touch wood. The fatigue and exhaustion may be your RA and not always the meds. Have you asked your employer about starting later if mornings are worse for you I know this has helped me in the past. Also be guided by your rheumy and think carefully before deciding to change meds it is still early days for you and our bodies take time to adjust. You take care and keep me updated Sue RA57

[Ruth-Louise in reply to RA57]

Hi Sue, yes I will speak to them in more detail when I see them next month. I keep hearing "your body will take time to adjust" but what does that mean" It will be 4 months after I started the meds when I see the Dr and is that amount of time not too much? I wish there was just a Dr or someone who could be honest and say "it can take up to X days/months for these symptoms to go away" and then at least I know how to deal with life and how long to put up with it for. I feel quite down-heartened when the Dr says "it takes time" because, even though I know it's different for everyone, that doesn't provide me with a light at the end of the tunnel.. instead, it just feels never ending.

[RA57 in reply to Ruth-Louise]

Hi Ruth-Louise I know it’s hard I have days when I feel awful and although my colleagues say to me you look better my reply is oh great when really I am thinking do you realise how long it has taken me to get ready 🙈 and actually I am feeling pretty rubbish. I try and not look too far ahead in the tunnel and try and enjoy the times when I’m not in too much pain. We need to trust the medical professionals however you and you alone know your own body and in time will know what works best for you. I have just started hydrotherapy which helped and looking into trying tai chi. Try and stay positive and keep in touch Sue

[HappykindaGal]

Can you work from home, or do you have to be physically present to do the job. The employer has to make reasonable adjustments for you if possible.

I'm fortunate (I think!), as I run a business and have a team so don't have to physically be there all the time. I have someone off currently with anxiety and our HR bod said legally, I have to make adjustments for her to return to work, so the same will apply to you. I think it's trial and error with the meds. I'm starting biologics tomorrow so I'm hoping for improvement.

Do people go back to work full time? Yes, I know several people with RA that are in full time work or businesses, so don't lose hope?

[Ruth-Louise in reply to HappykindaGal]

Yes I can work from home but I hate it. I get really down and sad if I don't have human interaction for more than half a day, so it's better for me to be in the office/around people who I can talk to. My employers are being amazing in that what I need they will sort for me. I just feel like my life is being stolen from me and naturally I'm worried I won't get it back.

Good luck with the biologics! Would be good to hear how you are getting on.

[Stynk]

Hello. I too love my job. I have not been able to work full time in 5 years. I take wed as a rest day and it has made everything possible. I can’t do a lot of the work I used to do and have to accept I am not on the promotion track anymore. It’s hard to adjust but has worked for me. Still bothers me a lot every so often. Good luck and hope you get back to work as you want!

[oldtimer]

It's not very helpful but it does vary a lot! And for you it's early days. It takes such a long time to get sorted out with satisfactory treatment.

Some people get back to almost complete function as they were before; others have to make minor or major changes to their life style.

We have to learn to take the long view - but it's SO HARD!

[Need2knowN]

I’m at the stage of reducing my hours, I was already part time, as I run out Businesses the other half of the week. Im thinking I need to just concentrate on our business now.

[Fatfingers]

I am still in the process of getting a diagnosis. When it started I was off work completely for 6 weeks. I then started a phased return to work based at home of only 2 hours a day in the afternoons as was still struggling with fatigue and getting out of bed in the morning. This progressed to half days and now I'm back full time but still working from home.

I used to travel an hour each way to get into the office so working from home saves me 10 hours of certain aches and pains from being in a car. My company have been very good so far and I have an occupational health appointment next week to see how they can help me to maintain my job.

So basically it depends on the company, person and your circumstances.

Good luck.