What can work do?

[Hels1989]

Ok so from the start work have been fully aware of my condition and have a full rheumatology report on file. I started benepali yesterday as some of you know and I was quite pleased all yesterday that I felt completely fine. Until in the night when It completely floored me!!! I feel so so nauseous and my body like lead. I work in retail and there is no way I can manage 8 hours on my feet today. I am just worried what work can do as I've had a few days off this year. By a few I mean 2 separate occasions of 1 or 2 days. Can they sack me or discipline me? I am worried xxx

[RA57]

Morning try not to worry overly as you have disclosed your RA to them and each employer have attendance policies. If you can obtain a copy, this will inform you of their policy regarding absence and what amount of absence triggers meetings etc. I think most employers have a disability leave policy also which may state how much absence is required before attendance meetings are scheduled. I have been off work now for 6 months as I have been flaring quite bad and am awaiting to start a biological. I have just started on the formal process but am hoping to start a phased return soon. Stay positive and keep us updated 😊

[Hels1989 in reply to RA57]

Thanks hun. I think worst case scenario I will get a disciplinary meeting which goes pretty informally and then after 6 months it will be off my record. I just hate people thinking badly of me but it's not like it can be helped ☹ xx

[RA57 in reply to Hels1989]

I know why do we worry what other people think but we do ! I’ve been working for 42 years and hardly had a day off. When I was diagnosed with RA in 2017 I managed quite well for a year at work then bang my goodness did it hit me. I really don’t want to take early retirement as I feel I have a lot more to give. Hope the benepali works for you 🤞

[Hels1989 in reply to RA57]

I know exactly what you mean. I see so many people who dont work because they just dont want to but I fear this illness may take my working days away from me and being only 29 that's so so worrying. I'm only working in retail part time right now as I'm on my own with my 2 children at home. But I've just done a teaching Assistant qualification and want to use that for when the kids are a bit older. I dont want it to have been for nothing because my illness stops me. Let's just pray we can work till we want to xxx

[RA57 in reply to Hels1989]

Well done to you for what you have achieved already. Hope you start to feel a bit better soon x

[Hels1989 in reply to RA57]

Thankyou lovely xx

[Matilda_1922]

Hope it’s ok for you and work treat you well

[Kerensa21]

Hi Hels

NRAS do some really good free booklets on your rights & you do have these, under equalities act it is classed as disability: I want to work, RA for employers & one for benefits at bottom of page if it doesn’t work out. They are supposed to make allowances for you.

nras.org.uk/publications/ca...

Good luck with it all x

[PinkLamb]

Don't forget, you are also protected "Equality Act 2010"

X

[Hels1989]

Thanks everyone xxx

[VeronicaF in reply to Hels1989]

how do you feel now? I don't want to swop one problem for another, don't like the thought of feeling sick or lead weight feeling, I had the lead weight with fibro, hope you feel better real soon

[Hels1989 in reply to VeronicaF]

The same ☹ the kids are at school and their nan picks them up on Tuesdays as I'm usually at work till 8.15. So I've got all day to rest xxx

[NeonkittyUK]

Good luck sweet Hels, and I do hope your work wll be reasonable about your new med. I think you will find you get used to taking it and side effcts are hopefully minimal. I felt light headed and a bit strange the evening after Enbrel but I was likely high on the fact it worked so quickly. Retail is not an ideal job for somone with joint issues so I do hope you can follow the teaching assistant role in the not too distant future and well done for qualifiying in that! 😁 X

[Hels1989 in reply to NeonkittyUK]

I know hun. I'm lucky that I only do 2 days and recently one day Is now in the office so I'm fortunate that it's just 1 day i now have to endure so it could be worse.

How long did it take to work for you? I've not been too bad recently as i have had a steroid injection about 5 weeks ago so I've had the effects of that. So I guess I wont know which is working for me until around the mark where the steroid would be wearing off xxx

[NeonkittyUK]

Enbrel (the original drug which is now being superceded by biosimilars such as Benepali) worked within three hours and I know that may sound crazy but some people have reported immediate effects on the original anti-TNFs. I did the clickpen about 5pm when the nurse came to supervise me from Healthcare at Home and after I stayed on the sofa for three hours till I needed the bathroom. I got up and moved upstairs wthout pain, like I had just been given a big boost of hydrocortisone. It was amazing for five weeks and then just fizzled. After week two I got a site reaction which didn't respond to steroid cream either. I developed antibodies they think, but don't panic about that as it is very different for everyone. Most people feel something after 6-8 weeks I was told. I was the same as you re the steroid injection when I started my Rituximab infusions in 2014. I wasn't sure how I would know what was working but I had very different feeling ... feeling good! .. a sense of general wellbeing which told me it was the infusion working and not the steroid after about 6 weeks. Just try relax. If you feel anything is too unusual for you or you feel awful again after your injection speak to your rheumy nurse. I bet it's much better next time! Glad you are not doing a full week of retail work and you can sit for one of your two days. XX

[Hels1989 in reply to NeonkittyUK]

Thanks so much lovely. Hopefully I will just know xxx

[NeonkittyUK in reply to Hels1989]

Sorry not to be on sooner ... Net connections. Hoping you felt better after your second injection? XX