I was just wondering how many of you out there have needed to cut your working hours due to your Lupus symptoms?
I worked full time as a nurse prior to diagnosis a couple of months ago after a serious flare that lasted weeks. If I’m honest with myself full time work has been a struggle for some years.
I am coming to the end of a month long phased return and I know I’m nowhere near well enough to do a full shift, so work have suggested 3 months part time hours. My full time hours could be reinstated if I feel after 3 months I am fit to do so, otherwise I will be able to keep part time hours. I think this is a good idea as it will hopefully help me to maintain some work hours and help me to feel as if I can achieve something (at the moment I am somewhat lacking in confidence), but at the same time I do feel a little defeated!
The pattern with my lupus seems to be that I have a couple of weeks feeling fairly reasonable, then a couple feeling awful-mouth ulcers, puffy face, sore chest, flu like symptoms, muzzy head, aching joints, extreme fatigue. This must be so hard for my work colleagues to understand as a couple of weeks ago I seemed to them like I was coping well with the phased return, whereas this week I was an absolute mess! Aside from a slight butterfly rash on my face and a swollen face I didn’t look much different this week than I did on my ‘good’ week, but I certainly felt different!
I have been taking hydroxychloroquine for 2 months now but haven’t noticed much difference in my symptoms. I see my rheumatologist for a review in September, is there any drug that anyone can think of that I should maybe ask him about to help me until the hydroxychloroquine kicks in? Any particular immunosuppressants? Steroids?
I know all these drugs have nasty side effects, but the misery of having debilitating lupus symptoms for a fortnight every month is grim!
I know my rheumatologist didn’t want to prescribe steroids if he could help it as I have recurring mastoiditis so he didn’t want steroids to mask any signs of possible, future infection.
I’ve hear it can take quite some time before hydroxychloroquine starts to take effect.
I would be really grateful for any thoughts.