Triggers

[Longlocks]

I was put on Benepali injections just before we went into lockdown and it has been miraculous. I was back to my normal self within a week. I’ve enjoyed a symptom free life for the last 16 weeks. I’m a hairdresser so was unable to work anyway but initially I was told to shield then to practice extreme social distancing.

I’ve been very lucky as I was given priority deliveries from 4 supermarkets and have not needed anything. I also live in the beautiful countryside with open fields all around me.

I’ve had the most wonderful time, baking,cooking from scratch, gardening etc and have reignited my love of art and been drawing pet portraits (I’ve actually sold 19 during lockdown👏😊)

I don’t want to go back to work and my old life to be honest 😢

My question to you all is.....

In the last few days my fingers have started to stiffen and I’m getting a little bit of pain, particularly in my little and ring fingers. I’ve had a few pins and needles in the night too. My feet hurt and my hot flashes (milder than before) have started to return.

Could this be bought on by the stress of going back to work or is it coincidence???

I’m currently waiting for a blood test so I guess that will show if my RA is getting more active

Thanks all

[Swimming20]

I was put on Benipali injections 4 weeks ago l felt great running around like a puppy great feeling..now am having to reduce my steroids my pains have come back not as severe

as before so have slowed right down ..the nurse said it will take 12 weeks to kick in so fingers cross ..good luck

[oldtimer]

It sounds, from what you say, as if the stress of thinking about going back to work may be setting off some extra symptoms, or perhaps heightening your awareness of symptoms.

Many of us will have experienced that inner panicky feeling of having to go back to work that we know causes us stress. Is there any way that you can change what you do in future?

[Longlocks in reply to oldtimer]

I’m not panicking about work. Just don’t want to. I know most people don’t like to HAVE to work but it’s more than that for me. This lockdown has given me a life and a break from normality. It’s not just work, my partner has 2 adult children with severe learning difficulties that we have every other week, that was impossible in the last few months and it’s been heaven and I’m dreading going back to that routine. Work. Boys. Work. A weekend free when I do get too shattered to do nice. Anyway sorry I’m just feeling sorry for myself. I’ve tried to broach the subject with my other half but he’s WAY too sensitive and his heckles go up if I suggest a different way xx

[medway-lady]

I'm not being rude but how old are you ? I found Benapali is ok but not great and its taken now 8 weeks but truthfully I'm not impressed. So going to keep on for another month to see if it improves more. I think it might be be the Benapali but in real terms it doesn't matter what is causing the problems you describe if you know deep down you want your life to change. My advice from personal experience would be if you can afford it go for it. You can always go back but if you don't take a leap of faith when now you might regret it for ever.

[Longlocks in reply to medway-lady]

I’m 53 and was diagnosed about 11months ago. I’m restricted with some of the meds(mtx for one) as I have naturally low neutrophils (part of the white blood count) and these drugs lower them further. I’ve been ok apart from the horrendous flare in feb/March where I struggled to use my hands/wrists/elbows and shoulders at all. I’m a mobile hairdresser so it was a nightmare and lockdown came just in time. Benepali kicked in and so far fantastic up to a few days ago and the stiff aching hands are starting again.

I would truly LOVE to change my life but just can’t afford to right now. My Art has been a godsend but just not enough pennies in it just yet. Xxxx

[Mmrr in reply to Longlocks]

Hi there, is it possible for you to work less hours as a hairdresser and do a bit of art work too ? Just a thought.

I tried benepali, which seemed to work very quickly for me, but after around 8 weeks it just stopped working. We are all different though.

[Longlocks in reply to Mmrr]

I’m about 14 weeks in and it WAS miraculous. Feels like things are coming back.

After this initial madness I may try and work less and do my art more xxxx

[Mmrr in reply to Longlocks]

I was medically retired from my job and initially was concerned about the reduction in income, but find that I spend a lot less on food, coffees, work clothes, bus tickets/petrol and so on. The reduction in stress has been so welcome too. Good luck with whatever you choose to do.

[Hidden]

Stress can play a large part in our disease or it could be a coincidence. The weather has been difficult lately could this be part of the problem? Best to monitor and see.🤞🏻

[Longlocks in reply to Hidden]

Yes I think you’re right. I’m fairly new to all this (11 months since diagnosis) so not noticed any patterns yet but will log it and see xx

[Brushwork]

I would suggest that RA is returning to active mode... but wait for results.

Benepali is great when it works for you, unfortunately I had an allergic reaction.

[Piggyinthecraftroom]

Could be stress or could be just a more controlled flare. I’ve been using Benepali for several years now having had Enbrel before. If I’ve done too much or I’m overly anxious, I sometimes feel really quite unwell. Take care. Good luck

[Longlocks in reply to Piggyinthecraftroom]

Thank you. I’m really hoping it’s a blip. I’m getting fractionally worse each day but HAVE to go back to work as a hairdresser on Saturday which I’m worried about to be honest and I really don’t want to either. My consultant advised me not to if there was anyway I could but sadly he won’t pay my bills and mortgage 🤔😤 lol. Just gotta slog on 😢 xx

[Knit12]

I’m on week 6 of Benepali, came off the steroids probably week 2. Hands are very stiff morning and night time. I’m having some good days and some crap days. Interesting I’m 57 and having hot flashes. Went through a non existent menopause probably 7 years ago difficult to tell as I was on drugs for a long time so had no periods. Anyway I digress, tiredness goes with the disease. I’m still holding on with this as most say it takes 12 to 16 weeks for it to be in your system. Plus the weather can impact how we feel. Cutting back on your hours and going part time might help testing the waters with your husband. Let us know how you go. Take care x