Struggling to work with Ra: I am hoping for some advice... - NRAS

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Struggling to work with Ra

Callabag64 profile image
22 Replies

I am hoping for some advice. I have had RA for 30 years, and during that time have continued to work. I had a very good full time job early on, but had to step down and reduce my hours to part time owing to my condition getting worse. I have had numerous surgeries including a shoulder replacement but still I go to work. I am the kind of person who would climb the walls if I had to stay home all day. I have 18months left to work before retiring, but after the last 2 years which saw me in hospital with pneumonitis brought on my methotrexate, my RA is not under control. Iam now about to try Rituximab, but don’t know what to do with regards to my job, should this drug not work. I have always loved working but find that I am depressed from the constant pain and now, do not want to go to work. Any advice greatly appreciated.

22 Replies
mccaffs2014 profile image
mccaffs2014

Are you in the uk?

Callabag64 profile image
Callabag64 in reply to mccaffs2014

Hi there, yes am in the uk

xstitcher profile image
xstitcher

I am very similar to you, diagnosed in 1983, reduced from full time to part time in 1988 & have had many joint replacements & ups & downs on the way. I started on Rituximab in 2011 & it works well for me, each cycle lasting around 9-12 months. Luckily in 2016, redundancies were offered. As my Mum had just been diagnosed with terminal bowel cancer & given 6-12months to live, I took it so that I could be free to help look after her. I also took my pension early. When she passed away, I needed to get back in amongst people so now do a couple of mornings in the local Sue Ryder charity shop. It has been a great help in making me feel 'normal' again & useful, but as it's voluntary if I'm having a flare up, I don't need to go in. No pressure! They have also just taken me on as 'bank staff' where I go & open the shop if the manager or her assistant can't cover each other & I get paid for it. I was in the same employment for 40years & scared when I left that I wouldn't be able to find anything again with RA, but I have & am thoroughly enjoying it. So, try not to worry, I'm sure things will work out for you.

Callabag64 profile image
Callabag64 in reply to xstitcher

Thank you for taking the time to read my post, and your kind words. Take care x

wanttobepainfree profile image
wanttobepainfree in reply to Callabag64

I was diagnosed with RA in 1998 and kept on working. I did not want to throw in the towel so to say because if this illness. I guess I was in denial for the first couple of years. About 5 years later after being diagnosed, I was hurting more and more. Don't get me wrong, I felt pain the first years of my diagnosis. I switched jobs and was working closer to home and the company I worked for let me apply for FMLA with them due to my repeated absences. In 2011, I became bedridden and could not walk. I was literally in bed with LOTS of pain for about 1 1/2 years. I went through depression, lots of pain, and cried every day. Due to the pain, I lost weight. I didn't want to eat due to the pain. I am now up and about however, the pain is still there. I feel like if I have been on everything methotrexate, plaquenil, sulfasalazine, arava, humira, enbrel, prednisone, remicade, xeljanz, Tylenol 4, etc... I can't remember all. I am on infusions now, Rituxan. It is not helping, I still have plenty of flare ups, am very, very tired, my hair has thinned out since I started this treatment and have lost pieces to my teeth in the back plus I get inflammation in my gums too. I do have good days with mild pain and those are the times I try to catch up with life and daily activities. I do try to stay positive though I wake with pain and go to bed with pain. I do thank GOD everyday for my blessings that I can function and I also pray for strength. I am seriously thinking about trying the CBD oil and changing my diet to non-inflammation foods and diet. My RA told me to do the mediterranean diet as well. I do work part time during election time and that helps me stay active. But to answer your question, check with your HR department about FMLA during your flare ups. Perhaps your doctor can complete your FMLA paperwork as intermittent. Also, has your doctor prescribed depression pills for you? I am on them and they do help me. I do hope the Rituxan helps control your RA. Many blessings to you, stay strong and positive. Keep the FAITH!

ruth_p profile image
ruth_p

I would try the Rituximab and see if it helps before making any decisions about work. If you have been at the same company for a long time then they already know what you’re going through and should be supportive. Get a sick note from the doctor and focus on getting better before making any life changing decisions. 💐

Callabag64 profile image
Callabag64 in reply to ruth_p

Thank you Ruth, it really helps to know others are facing the same problems as me. X

Mmrr profile image
Mmrr

I think you need to follow your heart and do what is best for you, now.

I was very busy active person pre RD, never at home but was medically retired last year, I haven't worked for over 2 years.

Although unable to do much in the way of outdoorsy things due to RD, I do other things, read, photography, meet friends, go to the spa and find the quieter life to be ok.

Removing the worry and stress of not being able to my job well, early morning rises, commuting etc has been a massive relief.

For me, not working was a very scary prospect, but in fact has brought much relief.

Callabag64 profile image
Callabag64 in reply to Mmrr

Hi there Mmrr, thank you for answering my post, what do you mean by medically retired, ?

Mmrr profile image
Mmrr in reply to Callabag64

I couldn't and still couldn't work, so received retirement on medical grounds 2 years early with no penalty (I got occupational pension as if I was 60 rather than 58 years old).

Callabag64 profile image
Callabag64 in reply to Mmrr

I wouldn’t have a clue how to go about that, but will look into it. Thank you

Mmrr profile image
Mmrr in reply to Callabag64

Ask your human resources dept or occupational health dept if you have one.

AngelMar profile image
AngelMar

I think you have to listen to your body and take it a day at a time. Seems to me your pain level is increasing and you need a rest, give yourself time to get your pain under control and see if the Rituximab works. Then decide about work when your feeling less stressed and have less pain. Sending best wishes 🤗 💐X

Callabag64 profile image
Callabag64 in reply to AngelMar

Thank you for your kind comments, it has helped a lot. X

AngelMar profile image
AngelMar in reply to Callabag64

Your very welcome, you have to learn to put yourself and health first sometimes, no matter how much you love your job. Best wishes 💐🤗 X

CloudTreeDrive13 profile image
CloudTreeDrive13

After reading your post it could have come from me. I'm 60 and like you have had R A for 30 years now. Working part time I thought would be easier but didn't account for getting any worse. I'm on Ritux and it works well for me. I went 18 months between infusions as I felt fine. I wish you well with the start of yours. My only advise would be "allow enough time" for it to take effect. Have a good day and take care xxxx

Callabag64 profile image
Callabag64 in reply to CloudTreeDrive13

Hello , thank you for your advice, the thought of the infusion has scared me somewhat. There is nothing that can be done once it is in your body should you suffer any scary side effects, and I think that is what I am worried about, along with the thought, “Will it work” I am encouraged by the fact that there are a lot of people who says it works for them.

CloudTreeDrive13 profile image
CloudTreeDrive13 in reply to Callabag64

Don't forget you will have obs done every half an hour and it can be stopped at any time. You are also in the right place incase of emergency. I think we are stuck between a rock and a hard place lol. Let us know how you get on please.

KayEP profile image
KayEP

I would go for it. After many meds, including biologics, Rituximab worked well for me. I had 3 rounds and now appear to be in remission.

Callabag64 profile image
Callabag64 in reply to KayEP

Hi there, so glad that the meds are working for you, like you, I have been on 3 biologics, embrol being a life changer for me.I am encouraged by the fact that it works for you. Thanks for your advice

mccaffs2014 profile image
mccaffs2014

Have you considered applying for PIP. I did not want to leave my part time job but now I am glad that I did.

Callabag64 profile image
Callabag64 in reply to mccaffs2014

I have pip. After many years on DLA given to me indefinitely, I was told Ihad to be assessed for PIP, and as I expected, all my benefits were taken off me. I appealed of course, and got the minimum for care. A year later, assessed again and got enhanced for care and lower rate mobility. The system is a farce.

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