I’ve just been diagnosed with PsA after nearly 18 months of symptoms. I’m being started on Sulfsalazine and being followed up in August. Over the last few months I’ve struggled more than usual and have been signed off work. I had 4 weeks off, went back for a week but didn’t last the Friday and am now signed off until 9 July. I work full time as a legal secretary (37.5 hours). I walk to work (about 1.3 miles) which I enjoy and it’s quicker than getting stuck in Bristol’s traffic. I wasn’t coping well with the pain at work and so couldn’t concentrate, get comfortable so was signed off to try and get the pain under control. At home I’m able to rest, lie down if I need to and only have to think about myself. My PsA is in my fingers, back, knees, toes and ankles.
Work are not putting any pressure on me to go back. I’m just wondering if I should stay home while I start the medication as at the minute the pain is as bad as it was so I’m no “better” than when I was signed off.
Just wondered what others did with regard to work?
Thank you
My thought would be that if you feel well enough to want to try then you need a phased return to work which may mean just very limited part time hours to start with. Tell your doc you’d like to try/agree something with work and see how it goes. If you find you can’t manage then your doc can sign you off again. You won’t know until you try and just getting some semblance of normality to distract your thoughts will help you through this tricky treatment starting phase. And sulfasalazine can take a while to kick in anyway.
I know how bad Bristol traffic is but cut yourself some slack, take transport for now or maybe walk one way/bus the other if you feel up to it.
I can’t even get in to see my GP next week! Nightmare. I’ll have to ring on Monday and ask her to call me or get an emergency appointment. Work have been really good thankfully and are going to arrange an occupational health assessment. I want to go back but last time I tried for a week I was fine for a couple of days then it started to really kick in and I was in tears at my desk and had to go home. I think I tried too hard to get back to normal hours as but it was totally unrealistic. I’ll speak to my line manager and see what he thinks.
Thank you for your reply xx
I’m in the UK too. I work full time but I’m really lucky I can do a lot of it at home. It’s just fabulous your work is being good about everything and occ health assessment will help both you and them to work out a proper plan too. I was on sulfasalazine and it worked well for me once I got to the very max dose (6 tablets a day) which wasn’t until 4 months after starting it. However it only worked well for another 6 months and I’m now I’m about to start another med - a biologic this time.
Also, but I stress this didn’t happen to me, sulfasalazine can give you side effects as I’m sure you’ve been told which take some time to get used to or indeed pass. So if I were in your position starting your first disease modifying medication, I’d stay at home if you continue to be signed off and see first how you get on with it, do the occ health assessment stuff and see how things are then. Occ health can suggest lots of stuff to help, such as a better chair, foot rests, key boards, voice activated typing etc etc. Any of those might help. Facilities for ice packs and/or heat pads could also help. And they’ll have ideas about graded returns to work, breaks etc. Possibly you could do some of your work from home too which might help. Have you thought of that?
What I’ll also say is work and having to work saved my sanity when this disease and its various consequences hit me. It gave me a focus and goal which emotionally I very much needed. So for me keeping on working however I could was essential.
Hi Lulu, it’s great to keep involved in work if you can. It sounds like you have a very supportive workplace, which is good too.
I pushed through in the early days, but that didn’t turn out so well for me. Now I’m much better at pacing. I work from home a lot now, but if I were in your situation I’d be looking to start either regular short days (eg 2-4 hours per day Mon,Tues,Thurs,Fri, with a rest day on Wednesday), or alternate days (ie Monday, Wednesday, and Friday), and if possible, shorter days (eg 4-6 hours) to begin with.
When things get better you can slowly ramp it up. It is important to be prepared that whilst we all hope it isn’t the case, you may be in “the Gap” for quite a while (mine was nearly 12 months, with some long term steroids thrown in so I could continue to work - again not recommended).
As such, it’s worth having a good discussion with your supervisor about what’s going to be sustainable for both of you, bearing in mind that work is a great source of friendship, confidence building, a sense of achievement, reason to do incidental exercise, not to mention income! As such, I know I do better overall if am able to continue some work, even during flare ups etc.
Thanks so much. I have been out and about today (it’s my daughter’s 13th birthday) so drove to an out of town retail park and went to Boots, The Range and Hobbycraft and it was too much for me so I think I do need to be signed off still until I give the medication chance to kick in. Work have the medical room on my floor which I can use as and when I need it to rest, use my Tens or just to have a minute out. They have suggested working at home too which I think would help.
Just another thought, is there any work you could do from home? Is there maybe something being worked on which isn’t pressure/time sensitive that you could have to do and dip in to for an hour or whatever works?
Or perhaps see if you can go in for just half a day? The OH assessment is great because it’s not just about workplace accomodations but also about supporting the employee to be able to manage to resume work - short days, part time and so on.
But these early days are tough. I was self employed when this hit me, a hard physical job 24/7 with committments a year or more in to the future and there was only me. I couldn’t call in sick. I had no choice but to keep going. It didn’t do me any favours as I developed increasingly acute issues such as bursitis and impingement in my shoulders and damaged my knees. By the time I got a great rheumy and effective treatment on board it was too late for my body to have any hope of regaining enough “wellness” to be able to carry on my business.
Sounds like you have great employers and I’m sure you’ll find something which works for you.
Hi Lulu,
I’ll let you know if the kick scooter works for me…maybe that would be a consideration for you and your 1.3 mile trek to work! I sure couldn’t do it, but hoping a scooter to give my feet some rest while also moving forward will make a difference. Even a little difference is better than nothing. I have a discussion about the scooter and as soon as I receive it and try it out (just ordered it a few minutes ago) I’ll let everyone know if it’s helpful! Painful feet are not fun and not being able to walk comfortably, I have found, is my worst disability so far.
Hang in there. The sulfasalazine should reduce your pain and inflammation, and the future is bright will all the biologics available. As much as I complain about my feet–they are damaged most likely from not treating my PsA when I should have–my biologic (Enbrel) has made my life a whole lot better. I can’t even imagine coping with the active PsA symptoms I had before I started Enbrel.
I hope you are able to return to work…sometimes it’s good to keep busy, but I know it’s difficult to keep your mind on your work when your mind is preoccupied with your pain and disability.
