Hi, I was diagnosed with RA in October. I injured my hand about 18 months ago in a fall and it hadn't got better after a Cortisone injection so had an ultrasound which showed inflammation in 4 joints so was referred. Plus I've got back pain and knee pain and I've been feeling exhausted for years so it's good to have a reason for this. My treatment has been very quick and I'm impressed with the speed I've been helped.
I'm on 20 mg of methotrexate at the moment and I'm really struggling with feeling sick and exhausted. I've got another appointment next month so I'll mention this and see what can be done.
I work as a bus driver and every day I just think I can't do this anymore. I've asked work for a Monday to Friday shift as I think a routine would help potentially but they have done nothing. Also feeling sick and even more tired after the methotrexate would help if I didn't have to go in at weekend. They are allegedly referring me to see occupational health but I've been waiting since October. I don't know what to do and am hoping someone can advise. I just can't do the long shifts anymore. I feel like just leaving but I've got a mortgage to pay so can't.
Thanks for any input.
Catherine
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Hi, yes I've spoken to the union who have asked again for a referral and the HR director said the manager should deal with it. And he isn't. Maybe I should go and see her. There is no personnel department. I'm just too tired and would just like it done.
I never had any issues but it’s worth considering that RA is controllable so life may well return to normal with medications so giving up your job would be perhaps seen as deliberate and it’ll affect your JSA. Unfortunately RA meds don’t work fast but things can change. If I were you I’d consider asking the GP if stress is affecting your health and give yourself some time to breathe without stress by some time off. I’d consider writing to the management with brief details of the diagnosis and treatment and then you’ll have a paper trail should you be actually leave or are made unemployed. In other words you tried and failed rather he said/ she said. You could then ask for a reduction in hours etc and apply for PIP which helps financially but it’s not a given that you’ll qualify but it costs nothing to apply so loose nothing by the process.
I did wonder about seeing the GP. I've given work a letter from the consultant with the diagnosis and also a letter saying routine shifts may help. I just know I've got 2 ten hour days Saturday and Sunday. Thanks for your reply.
how often are you taking folic acid. Most of us need the 5mg 6 days a week, to help with side effects. If only once weekly call your rheumatologist and see if you can increase. Can you self refer to OH?. If you’ve declared your illness, they have to make reasonable adjustments, although what they see as reasonable may be different to you. Can you split your week so you’re not doing too many consecutive days. If lack of sleep is contributing to fatigue it may be worth looking at amitriptyline it helps with pain and sleep
Hi, I'm taking the methotrexate on Friday and folic acid on the Saturday. I'll call the rheumatology helpline and see as I'm willing to try anything. The OH is external, we don't have our own, so I can't self refer unfortunately. Splitting my week would be ideal but I need the OH to recommend this as work won't just do it. I've asked to see HR but she's not available until Friday. I'm taking sertraline which is lucky really as I'm very stressed. Thanks
I take the folic acid once but two days later. Speak to your GP. Regards managing your pain while the Mtx kicks in.
Ensure all contact with your employer is email or written, if you have a conversation make written notes immediately after and ask for everything in writing. Your employer may be dragging their heals but if you have a solid paper trail and are forced to resign by their inactivity you could have a constructive dismissal claim....in that you were forced to resign because they didn't act to support you and you were left with no option.
It's potentially not safe for a very tired you to be driving a bus.
It's good you now have a diagnosis but it will take time to get the right medication combination to make you feel normal. So you just need a bit of leeway.
Thank you. When I went into work yesterday I spoke to a manager who was chasing up the referral with another manager. Anyway he said they'd said there's more to it than meets the eye. I don't know what this means and I was shocked and upset as I've been waiting for a referral for no reason apparently as nothing has happened. It makes me sound like a fraud. I was visibly upset and he said he could see I needed a referral and would do it. I said I was going home as I just couldn't do it anymore which he understood and was fine. I've got today and tomorrow off as rest days. I will phone the doctor today and am mulling over whether I should go back in on Friday or have time away. Every time I think of it I'm crying which feels pathetic. Thank you for advice regarding a paper trail as well. Onwards and upwards hopefully...
I felt nauseous on methotrexate and they upped my folic acid, other than feeling slightly nauseous on the Monday (I take methotrexate Sunday) I’m fine the rest of the week. You can always have the injections which should do away with the nausea
I could not tolerate methotrexate it made me constantly nauseous and made my bowel conditions worse. Once I was changed to new meds I was better supported. You did not mention stiffness . When my RA was uncontrolled or at its worse all joints became very stiff if sitting in one place for long . Holding the steering wheel was painful. I would need to move frequently. In fact I considered giving up driving. Since being on biologicals this pain and stiffness is considerably improved and driving is no longer a problem. We are all different and some meds work better for each of us. You are only prescribed biologicals if you meet certain criteria . I think the answer is getting the right meds. I am retired now but worked for almost 40 years in a job I loved despite pain and stiffness.I never missed a days work for RA. I afraid RA is with you for life. With the right meds and personal determination, you should be able have greatly reduced pain and stiffness, in order to keep and enjoy your job. Go back for medical help. Your employers need drivers who are fit enough to do a job, especially when you have other people's lives in your hands and where you need to be both physically and mentally fit . With the right meds you should get there. I learned , although it is hard to face, in life you need to rescue yourself. Good luck.
Thanks for your reply. I have contacted the doctor and am awaiting a response. I've asked about methotrexate and also stress. I think I need some time out to regroup but I'll see what they say.I do suffer from stiffness, when I stand up after driving in a 4 1/2 hour stint I can barely walk as my lower back is so stiff plus my wrists and right hand from the handbrake which I can deal with although driving for a shorter period of time would help.
I don't want to stop working, I just need some help so the shifts are not so long so thank you. I will try and rescue myself.
Thank you for replying. I felt so harsh writing my reply to you but I was trying to help. When I first had RA and in the initial years, decades ago before my condition was properly diagnosed or treated, I too was very low. The pain made me cry easily and I felt very low. A dear friend said ' In life we are all to some degree alone. We have to rescue ourselves.' I felt very upset over this, but it was good advise. Of course having a loving family and friends and giving ourselves small treats helps. l learned I had to chase up my diagnosis and treatment myself, which I did and still do. I can see that you want to keep your job. Make that clear to your employers. Investigate what might help. Perhaps shorter stints between journeys when you can move a bit in between. They might agree to this. Before I went on anti tnf meds my rheumatologist said my wrist tendons were likely to snap and I would not be able to use my wrists. Anti tnf was like a miracle. I can now use my wrists, drive and garden again. Certainly take that break, but try to get the best meds possible for you. I think with the proper medication you will be OK.There is light at the end of the tunnel. All the best.
It wasn't harsh so don't worry. I did say to work yesterday I want to work but the shifts are just too long at the moment. I'm awaiting a call from the doctor but yes I do agree, it's in my hands to an extent, so I'll just have to keep pushing. Thanks
Well done! I think you need a DAS score around 52 ? to qualify for ant tnf and to have tried 2 other meds.A GP doesn't supply these a rheumatologist does and you have to have several tests first. Blood , xray, etc. I found Naproxen helped a great deal. Your GP can give you this. Hopefully your employers will be supporting you now. Perhaps your GP might also help here.
Talk to someone your union, CAB, or ACAS, HR are not on your side. I imagine as a shift worker, 7 days a week operator a Monday to Friday shift is tricky - to be fair. But, you need advice on how you can work and manage. Eventually you will feel better and more able to cope.
Thanks. I said to the manager I appreciate it's not ideal but there are duties I could do and I want to work. I'm waiting to hear from the doctor and the union
Hi do go to docs and cab if you can ,Specially incase its long term sickness is a possibility, your ra can also be high risk disability for work for lots as well and reduced hours needed,and for some early retirement etc or sickness benefits, that is the other side of this for yiu to consider depending on your circumstances, cab will help ,not sure if a wee break on sick leave if you can get interest payments paid on mortgage etc cab will help you with that ,it is a physically demanding job you have as well ,And lot of ra patients do go on long term sickness leave as well ,And a lot have to leave their jobs in first 4 to 5 years etc I'd speak to cab for your options and best way forward
And keep i touch with doc on an ongoing basis just now as well ,And get everything on your doctors notes everything
I found taking the methotrexate at night really helped with nausea and tiredness. I previously took it in the morning and felt slightly nauseous and tired all day. Doing it at night means I sleep right through it and then I just miss the folic acid dose the following morning. I take folic acid for 6 days a week. Hope this works for you and as others have said keep on with your union and don’t give up. You’ll get it sorted 😉
Hi I’m sorry you’re struggling. Those are very long shifts. Just a thought from the sickness point. You could ask to be transferred to Methotrexate injections instead. It bypasses the stomach so the nausea decreases.
It is a long shot, but with the new emphasis from the government on keeping people working, there might be some support to keep you in work from the NHS locally. I know in my county they have been doing a pilot scheme where a health care professional is working out of a GP surgery with people who have a job and want to keep it but have MSK problems. It is a mixture of physio and OT type stuff with advice on working with the companies to have better hours or what ever is needed. They found the pilot was really successful as it keep people in the jobs that they wanted to do, so they are now rolling it out to other areas.
So you are right to go to the GP surgery, but you might also want to have a chat with their social prescriber/care navigator to see if you have this kind of support in your area too.
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