LUPUS UK
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How many of you have reduced your working hours due to Lupus? Any advice regarding medication to ask for alongside Hydroxychloroquine?

Hi all,

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.

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Hi Serser

I was diagnosed with Sle lupus 5 years ago - also prescribed hydroxy and for me it took around 3 months before I noticed any difference, mostly reduction in pain from my joints and fatigue was not as severe. Don’t underestimate the benefits of good old paracetamol! If my joints are really bad and painful I also take co-codomal and ibuprofen in between! With regard to work, I reduced my hours to a 4 day week but what works for me is I take a Wednesday off - this means I never have to work more than two days without a break without a break. This gives me the chance to rest and recuperate and makes me more reliable. Good luck, I hope you find something that works for you xx

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Thank you Jacamac,

That’s a really good idea! I hadn’t thought of breaking the week up like that. I think I’m going to do 3 days a week at the moment as I really still don’t feel well at all. I worry that I can’t do a full day yet!

I’ve been taking loads of ibuprofen and paracetamol too.

Are you prescribed anything other than hydroxychloroquine by your rheumatologist that you find helps at all?

Thank you for responding.

Xx

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Hi Serser, I was off 5 months last year phased return & took holidays with it so full-time in theory, then started part-time in January been doing at 27 hours week 10-4 with a lunch break seemed ok manageable.... I now gone up to 32 hours & its a wait & see...staying till 5.00,pm. I have till the end of thd year to see if i can get back to full-,time before my contract gets permanent ly changed.. one way or another.....

Meds are a hard one so many variables from one lupus person to another & other added diseases such as sjogrens... Give hydroxy time to build in your system....

Should mention i really struggled on my return, better now getting up & going....need the time in the morning, may not be able to do a 9-5....ML

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That’s really hopeful maggielee!

I was crying with frustration in work last Thursday because I just knew I couldn’t keep up with the phased return plan that had been planned out for me. I know it’s silly but I just felt like such a failure!

I overthink things too...I was thinking what must others think of me, just 2 weeks ago I appeared to be fine, yet this week everything went pear shaped! And it all looked like there was no reason for it at all as I looked okayish really!

It’s good to hear that you also struggled at first but now seem to have a handle on things, that gives me some hope! I think maybe me expectations regarding the hydroxychloroquine were a bit too high and I need to be more realistic!!

I too also have Sjögren’s :( , so a main player for me is always a very swollen, sore mouth and dry eyes too.

Thank you for responding and giving me some reassurance!

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I seem to go up & down with feeling about work, sometimes i am ok, but to start with really tired, so slow build of stamina, helped to have boss say i am sick & i could reduce my hours again if need be... I gave her leaflets on lupus to start then realised it was the sjogrens causing me more problems (as i can control some of the SCLE by avoiding uv mostly ).

I went to a sjogrens specialist in Swindon & that helped to discuss it with her... there is a treatment protocol now so very informative. May go back to her as a follow up.....accepting 2 or more autoimmune diseases is alot to take on board & work.... I feel very slow 🐌 at work in productivity, that is hard too & informing folks that i am sick & that its incurable...like admitting there is something wrong with you.... So be nice to yourself, realise you will sometimes need to rest... Keep posting.... I also am part of a group & hearing others stories was a real eye opener...... I actually like my job which helps & it helps pay the bills 😊 ... Also started physio as i was really aching & its helping me realised i was losing posture & alignment & started hurting because of it..... ML

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Really helpful and positive, thanks maggielee.

I sent my manager a copy of the lupus booklet for employers. To be fair work have been lovely - it's more my own hang ups about admitting I am currently unable to do what I used to do that has come as a bit of a shocker for me! I find it hard to give myself a break as I almost feel guilty about letting work down.

As I am still new to diagnosis I am still trying to figure out triggers and patterns - it'll so new!

also admitting that I am chronically sick - it's like I know that I am but despite feeling awful as a result of it still hasn't properly sunk in on the correct level that I am chronically sick - if that makes any sense at all!! I've always been a do'er and rarely asked for help, but have always been keen to help others - at the moment that's all gone - I'm struggling to help myself get through a working day let alone assisting others, I just hate that! I don't want to be seen as a victim, but at the moment I feel a bit stuck!

Also I often don't look sick (I know what does 'sick' look like?), but I look at myself and I almost believe the invisible lie.

Also I had only just been promoted when I got ill - so I a with am new, busy team who I know need full capacity staff - this all takes it's toll on how I feel about myself when I struggle. I know this way of thinking isn't helping and I am trying to block the negatives. I will be okay - I am just impatient I guess! Being a mental health nurse sometimes doesn't help either as I am constantly 'shrinking' myself!!

Maybe I need to take a closer look at the Sjogrens element as you say. That diagnosis was given to me secondary to the SLE diagnosis so I haven't really spoken to anyone about that in any depth yet.

Physio may also be worth considering too.

Tank you so much maggielee for your input with this xxx

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Hi Serser, I reduced my my weekly working hours to a third (desk job & UK travel to client meetings, now mainly replaced with Skype!) to accommodate fatigue and low cognitive function amongst other stuff. This was 6 months before diagnosis of UCTD (although going through health investigations) as I was just not well enough to function properly. This reduction in hours worked really well for me as I felt I could still make a contribution, use the grey matter (that was still operational!) and keep earning. Just after diagnosis in April, I did get caught in a downward spiral of low confidence and a massive bout of the blues which did impact on my thoughts of not being able to do my normal job and doing it to the expected standard. The hydroxy prescribed at diagnosis in April well & truly kicked in during July and not only do I feel so much better, compared to how I felt previously, but I have managed to take on a bit more at work, which has made me feel happier & a bit more confident and hopefully I am in more of an upward spiral now.

Do persevere with the hydroxy, it will kick in, it’s a bit of a waiting game and hopefully you will feel the benefits when it does. To help with joint pain & fatigue, I have weekly Epsom salt baths, drink nettle tea daily, use aromatherapy oils in a diffuser to aid relaxation & well being. To get through a client meeting or need a bit of “oomph” for a work situation, I go down the pharma route & take a couple of Anadin Extra to see me through, they seem to help! I take occasional paracetamol & ibuprofen to keep joint & muscle pain at bay and sometimes have to resort to Tramadol at night to kick neuropathy pain into touch. I found I had to try different remedies to find what combo worked for me - it seems some natural with a bit of chemical does the trick. Also nothing like a good laugh with friends & family and a bit of fresh air from time to time helps fix things even if temporarily. I hope you start to feel better soon, it is one hell of a journey and one that people here on this healthboard can empathise with. You are never alone xxx

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Ooh thank you so much Horsewhisper,

I’m keen to try natural remedies too. I will certainly try some of them. I get the lupus uk mag and there was an article in there about aromatherapy which sparked my interest greatly!

I’m glad you noticed a difference taking the hydroxychloroquine. I would never just stop taking a medication, I would always persevere! I guess it’s just a bit soul destroying to still be plagued by flared ever couple of weeks! I can almost set my watch to them and there seems to be no intervention I can do to help myself avoid it happening-frustrating to say the least having such lack of control presently!

Thank you for taking the time to make me feel better about all of this-much appreciated! Xx

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Sorry Serser, I forgot to mention earlier, have you tried removing the nightshades from your diet? I have given this a go and I’m sure it has made a difference. By not eating them has reduced the constant “unwell” feeling that seemed to constantly plague me. My dad had an autoimmune disease called CIDP, he was a GP and he believed that the nightshades stimulated the immune system. Sadly he is not around anymore to compare notes, but at least I can benefit from his thinking. So I’ve given it a go since diagnosis and have felt an improvement. I’ve also reduced salt & sugar and I’m sure that has helped aswell. Anyway, I hope these suggestions are useful to you and fellow wolf-warriors! Xx

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Top advice, thank you so much! I will certainly try that.

I am quite careful about what I eat and drink, but I do admit to doing the ‘to hell with it all, I’m eating/drinking that’, especially when the going gets tough, which I know is quite self destructive!! I haven’t been the best lately which has probably added to my misery.

Wolf warriors are totally what we all are in here! We all rock!!

Thank you so much for sharing your Dads wisdom too. There’s nothing like listening to advice from lived experience.

Xx

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Yes indeed! A bit of what you fancy and all that - I try and mix the good with the naughty having just tucked into a Chinese takeaway and a glass of wine - now about to have a nice long soak in an Epsom salt bath! I hope you start to feel better soon and crack on with the treats as and when you need them!! 🍸🍰xx

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Nightshades, ah - I forgot aubergine is one and ate my last yesterday...due to a definite reaction this morning ('change in gut motility' ah-hm!). Here's a bit cut and paste:

"The Latin name for this family of plants is Solanaceae, because all of them produce an alkaloid compound called solanine. Solanine is part of these plants’ natural defense system, acting as a nerve poison on insects that try to eat the plants."

Stay well xxx

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Thank you eekt,

I’ve had a look at the nightshade family of veggies and the main culprit for me is probably potatoes. So yesterday I had my very first potato less Sunday roast :(

Thank you so much for responding. I had never heard of nightshade veggies before so this is all good advice.

Xx

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Sweet potatoes aren't nightshade and roast well!! 🍠🍠🍠

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Phew that’s good to know!! I did have a rather measley looking dinner last night!!

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Hello Serser,

I'd echo jacamac 's view and try to avoid further prescription drugs if you can. Two months may not be long enough to have felt the full benefit of HCQ yet. When diagnosed 3 and a bit years ago, I had 3 part-time jobs - as a community nurse, a self-employed child therapist and a clinical supervisor - and was keen to hang onto all of them. The therapy role had to go first, as I could no longer guarantee to see my clients on a regular schedule. The NHS job was OK for a while, as I moved to short days, which helped avoid the afternoon crash in energy levels. The supervision was the last to go - I prolonged it by switching to Skype sessions which I could do from home.

Are there other ways or patterns of working that you could consider - I found Occ Health surprisingly supportive with this and never had any sense that anyone resented my health-related failings.[ Like you suggest, it may be helpful if you can cultivate some very obvious signs of being sick! Luckily, I had a sudden onset of very marked Raynaud's, which turned my hands blue even in the office, plus obvious shortness of breath, so no-one could mistake when I was having a bad day!]

As for seeking other meds, I would be very cautious about this. Steroids provide short term relief, but they are truly fickle friends. 3 years in, I am not at all sure that they have been good for me, as I have developed adrenal insufficiency and still struggle with a mystery super-fatigue that seems to be related to steroid use. Likewise, I've had a recent bad experience with azathioprine which resulted in two emergency admissions to hospital. By all means take these more specialist drugs if you feel there is no alternative - they can be life-saving, after all - but do explore less committal options like cocodamol and some of the various, non-daft, 'alternative' therapies first. x

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Thank you whisperit,

A really honest and useful answer about being wary with regards to adding on other meds. I have looked after lots of patients that take steroids and immunosuppressant meds and I know their effects aren’t all rosy! But none of my patients have lupus so it’s hard for me to know how those drugs would effect someone like myself. It was good to read your account though as it spelled out just how un-rosy they can really be for us-thank you!

I won’t mention anymore meds to rheumatologist in September, I think I’ll look at hour reduction :( at work and alternate therapies mixed in with some good old fashioned ibuprofen and paracetamol.

It’s good to hear that despite how you were feeling, you are still managing to work with some clever adaptions to your day. I need to think like this I think, I bit more out of the box!!

Thank you for your support as always whisperit xx

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Hi Serser.

I’m in a slightly different predicament. After my last flare up (I haven’t been diagnosed with lupus but apparently I have over half the markers that say I do, so they say it’s just psoriatic arthritis)I was off 6 weeks I did my return to work whilst being out on an attendance improvement plan which if I fail I face disciplinary action. My boss has said for months and keeps saying I should drop my hours. I can’t afford to do this at the moment because even though I struggle to walk and my joints constantly flare I only qualify for low rate care pip. I keep getting told “don’t you think you should drop your hours?” But I’m not ready to as if I do I know I’ll deteriorate quicker. It sounds like your bosses are much more reasonable so do what you know is right for you. And I take my hat off to you for nursing as it’s a job I couldn’t do and I think all nurses and junior doctors deserve a pay rise as they do the work whilst the specialists get the credit xx

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Oh bless you Sarahd1609,

Going part time is going to put financial stresses on my family, but for me it was the better alternative than not working at all, which is how I felt last week! I could have easily given up completely, which is not like me at all!!

I’ll be honest I looked at my situation as I either take the part time hours or I risk going off sick again :( which means starting all over again-soul destroying! I am protected to a degree with my sickness as I’ve had a diagnosis do I can understand how difficult your situation must be as you don’t have a diagnosis.

Have you an occupational health nurse or hr advisor you could talk with?

Could you ask for a second opinion from a different rheumatologist to hopefully provide a diagnosis? Especially as you say you have many markers.

I hope your situation improves!

Thank you for taking the time to respond to me-I really do appreciate it xx

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Hello Serser,

As well as all the most excellent advice and experiences from the others, I'll just add that though I was so grateful to get into Rheumatology last Sept, I had no sense of a treatment plan for many months. I have Undifferentiated Connective Tissue Disease (still described as probable as it could morph); I'm being treated for Mast cell issues with Montelukast and antihistamines; as well I've had a positive biopsy for some form of Vasculitis (which is yet not being treated).

Hydroxychloroquine was mentioned first. By the next appointment it was prescribed. It took about 3 months to get rid of the joint pain (in that area it worked for me!). But I was still getting the systemic symptoms -- low grade fevers, sweating, nerve buzzing and pain, fatigue as well as extreme sun sensitivity. Immunosuppressants were suggested at the next appt. Then were prescribed at the following one. I'm on Mycophenolate Mofitel now. We've had to do a couple trials of forumlations due to side-effects, but this medication has been a god-send and I've been my whole entire self through the month of July including the eradication of the sun sensitivity. There is some real success with some of the medications. The same immunosuppressants are generally used for all the different connective tissue diseases. There are many to choose from.

We're avoiding steroids for me by going this route. But of course it's also a crap shoot. As there are the side-effects there too. But there are times when the side-effects outweigh the alternative. And I have to say my Rheum has been excellent at trialling and follow-up so that we get me on the right one. If I look back at the process, I realise there was actually a game plan from the beginning. It was based on what I brought to the appointments. Hopefully your Rheum will be on the ball and see exactly what symptoms of yours could need further treatment; and talk you through those options.

Good luck!

Panda x

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Hi Panda,

Thank you for taking the time to respond. Sounds like you have a great rheumatologist who is really on the ball with your symptoms. It also sounds like you've really been through the mill!

Looking at the responses I've had i think I just need to persevere longer with the hydroxy and the pain relief for the time being. I really hope it doesn't come to the point where I need to ask for steroids or immunosuppressants, but I won't completely rule them out for the future if I think I'm backed into a corner.

i am going to look into alternative therapies. As I am still newly diagnosed I am also still figuring out patens and potential triggers - though most of the time I am at a loss and wonder if I really do have much control over anything that happens?!

Thank you again Panda for responding xx

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Hi. I empathise! I've been down the same road. I reduced hours and still ended up being ill and was medically retired by the Council in 2015 at 52. You're probably going to need steroids or immunosuppressive meds. I hated being forced to retire as I loved my job, but since retiring the SLE is so much more settled. Wishing you luck going forward, Sheena

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Hi lupie46,

Thank you for your honest account. I’m like you I love my job and had recently taken on more responsibility so this is a tough blow psychologically for me.

I remain ever hopeful that after my 3 month period of part time I’ll feel well enough to work full time, but I know I have to be realistic.

Thank you so much for sharing your experience with me.

Xxx

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Hi serser I was diagnosed 4 yrs ago same symptoms etc was working full time on shift work in call centre. It took 6 months for the hydroxy to kick in was taking paracetamol whenever needed wasn't going to take any stronger meds. The second yr was the hardest left job found 9-5 job weekends off still ill had 3 differnent jobs that year in the end got sacked from last job after 2 months. Thts when I realised I couldn't work full time when to disability agency who were great advised working part time helped me back into work have been working in current job for 2yrs now. I do feel at times I'm better can work full time but then the flares kick In and show me no you can't work full time. My family are great not bothered if I work or not but I still feel I need to for my sanity 😁.

So working part time for you just to help get it under control etc would be best and if your work are supporting you can't really ask for anything else.

Hope you feel better soon and find what works for you. X

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Hi 12derby,

Thank you for your response.

I think I feel the same as you. I’m almost pulled into a false sense of security when I feel well, thinking that full time work would be fine, then the flares hit (like last week), and I just feel awful and need to sleep by the time midday comes! Not great for a nursing career!

I’m glad you’ve said it took 6 months for hydroxychloroquine to kick in as I was getting a bit concerned (and impatient I guess!)

Financially part time will take its toll but I think we’ll manage. For me it’s also about feeling well enough when I’m at home too as I have 3 kids and a household to run also. At the moment I don’t feel as if I’m running my job or my home life very well at all! Something has got to change! I’m not depressed but I know if I don’t help myself now I am likely to become low (I’ve been feeling it).

For the most part I am the master of my own destiny at the end of the day!

Thank you again for your input xx

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Your welcome 😊

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Hi Serser

We've been in touch before and I'm so sorry to hear you are going through all this. I totally empathise. I was diagnosed finally in Feb this year with SLE, and like you and sooo many of us, been struggling for years and year previously.. things just got much worse due to this job being so stressful.. and me hitting the menopause. But they think I've always had it. Sorry if I've told you previously(?) but I have recently dropped to 4 day week very recently and before that was off sick or using my annual leave to have long weekends. Now I work 9.30am (as pants in the morning, I'd start at midday if I could!) and finish at 6pm. That's a very long day but was the only way I felt I coudl manage financially as meant I only dropped 5 hours. At 3pm I'm hitting the wall. I make sure I have mini breaks ie couple of mins now and then.. and I finally take that 30mins lunch hour we're not paid for by sitting in the garden or something... well, I say that... I rarely do in practice! I now have Fridays off but I'm already struggling even Monday a lot of the time. As many in this stream have, I met with Occ Health (a request via my line manager due to being off sick a lot) and they made recommendations for reasonable adjustments. However I don't feel they are being made. I was meant to have no cases out of area - and I have two. I was meant to have simple reviews and I don't. I was meant to have a reduced case load and I don't. We all have things we have to do in our job and we have to figure out if we are "even able to do it" as my line manager queried!! You need to figure out what changes you need to support you to remain in work for as much time as you want to. I'm awful at this currently - as I can't push for my needs when feeling so dreadfully exhausted and ill. If I'm honest I want to stop work. It's just too hard. but I live alone and cannot afford to, Benefits would not be enough in any way. I can't remember how old you are. I'm 55.5 now so coudl retire but have a teeny pension which wouldn't help at all....and always thought I'd carry on until gone 60 - but now I'm thinking I'll be luck to carry on another couple of years like this.... as, coming to your other question, the drugs can only seem to do so much. I was on Hydroxychloroquine for 6 months but had to come off it as it made me so ill. Diabolical stomach cramps, daily diarrhea, and extreme aura(?) migraines - I couldn't go far from a toilet - or see a lot of the time time due to the lights I saw in the aura! I'm down as allergic/intolerant now. so I was put on a month's course of steroids (prednislone) when first diagnosed in March. I felt quite unwell on that.. didn't do much for me to be honest. The lesions on my hands and swollen joints went down a bit though. Then onto Methotrexate immunsuppresant. That has taken 4 months to kick in. My hands aren't swollen and hot bright red and peeling any more in the day, and almost never at night which was when it was veyr bad - now that's an improvement! But they still throb, as do my feet along with the pain in all joints and tendons it keeps me awake unless I take pain killers and OTC sleeping pills (nytol etc) - but sometimes I need prescription ones too... just a nibble to take the edge off ;). My body hurts more and more - I have widespread osteo arthritis (all my C numbers in cervical spine in a bad state said the MRI) but also synovitis in hand and feet joints..and tendons coming out of part of my hand - but this fluctuates. It's the exhaustion and brain fog and headaches.. If I get stressed at work or have to do a ton of mathematical stuff I start to shut down. I can only imagine how hard your job is... and now with a lot more responsibility but each role has it's own level of that. So - I hear so many good things about Hydroxy but it really was awful for me... I did try. Something else that might help = I met with some lovely Lupees yesterday in Brighton - my first time at their monthly support coffee morning. It was amazing. I think I rambled tons - and there were two other newbies so it was a little er, busy on the symptoms front. I was nearly in tears being able to talk about my stuff actually in person with fellow bods, and hear them state their symptoms just as I find mine... without prompting ie I felt heard and in an empathetic group... unlike those who don't have this and who can only look and see someone who looks relatively OK when the make up is on! So - my advice would be as those with a lot of experience of this tell us - we need to look after us first - frankly you in your job and me in mine (Social work) cannot look after anyone else if we don't do that first. We are supporting vulnerable adults ourselves and are giving giving giving.. Get to your in house Occ Health - get some reasonable adjustments sorted - oh and if you have't already get your Rheumatologist to write a letter for work - mine did - and get them to write what you need them to ie mine (agreed with too) wrote I need to limit stress and need to work from home (which I have been able to do for months now - but you can't I'm guessing? Makes a huge difference - but then I'm out and about much of the time anyway - just not in the noisy office with bright lights and mayhem) to enable me to continue working as much as I can as "we know this has better long term outcomes" or something. Personally I'm not sure what woudl become of me not working.... I think I need to do afternoons only and 4 days a week. Could you do that? Coudl you job share? As you're in the public sector with a disability under the Equalities Act they MUST look at supporting you. I've rambled... I obviously type too fast ;). Hope that helps a little Senser? x

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Oh bless you DJK99,

Thank you for taking the time to write. You have some great ideas. I hadn’t thought of asking my rheumatologist to write a recommendation letter for me, that’s a great idea.

I’m only 36 so getting my head around part time working at such a young age has wrecked it a little!

My grandad passed away due to lupus when he was 53 so I can’t help but think that maybe it’s not a bad idea for me to wind down a little for this reason.

Work will support me as much as they are able to but I do feel a liability!!

I know I need to look after myself, that can be hard when you’re used to caring for others.

It sounds like you have a good system working from home, sadly I don’t think that’s going to be an option for me.

You’ve cone up with a ton of really good advice and I thank you greatly.

I’ll keep you posted on how I get on! Fingers crossed things will start to slot into place for me (you can always hope!!)

Than you again DJK99 xx

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Hi Server, I've had lupus over 15 years and to be honest I've been on low dose steroids most of the time in tandem with various immunosupressants and hydroxychloroquine. My flare pattern is that I can be ok for months or even a couple years then crash bang wallop and I'm practically incapacitated for at least a month. Thankfully my employer has been great when it comes to returning to work. One time I worked from home for a month before stepping foot back into the office. Another time was part time. Currently I do four days out of five in the office and one at home and if I'm not feeling too good I can take do more days at home if I need to. I appreciate as a nurse you can't really work from home nor just call up before your shift to say you're not coming in without triggering sickness procedures. So perhaps you might want to think seriously about dropping those hours. That way you get the best of both. Just my two pennies...Good luck!

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Thank you patient 165!

I am desperately trying to get a work based assessment sorted through access to work to see if they can offer any ideas/suggestions, so fingers crossed that will help a little.

I'll be honest for the meantime I think the 3 months part time hours is the only practical option for me as i'm just not well enough/stable enough for full time hours yet. I'm going to push for an assessment from access to work to happen within these 3 months so that by the time the 3 month period ends I should (fingers crossed) have some ideas to play with that may enable me to if not return to full time hours at least increase my part time ones.

It has bean so useful to me to read everyone's experience with returning to work and the many hurdles and stresses you don't even realise exist until you get to them!

I'm glad you've found a way of working in your job - I bet it's helped loads with your confidence!! I need a bit of that now!!!

Thank you again for responding x

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I 100% agree with DJK99 if you're a public sector worker than you're protected by law regardless of what any middlemanager says or thinks.

I hope things improve for you both!

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Working and lupus really one of the most difficult problems we have. It’s so hard (even after years) to believe that we can’t make our bodies what we want when we previous could and when it comes and goes.

I retired after twenty years from a demanding role and miss it like madcalthough my illness is so much better. It’s amazing to me that it’s noy understood that money is important too. Retirement is extreme option particularly when you love your work...also may need easier time when you have young children and pick up more later. It’s all so hard to balance and weigh up.

Everyone should be protected under Equality act to get reasonable adjustments (recent paper from TUC google disability invisible TUC) if these are not enough, particularly in NHS look at redeployment/retraining to have predictable/containable workload to maintain work and health. Would be great to avoid steroids (been on 27 years and wish I had not) but clearly decision for you and your doctor.

Will be publishing research soon on lupus work..will highlight when do but it is a very real problem and very little work done to pilot reasonable adjustments for fluctuating condition.

Also google Karen Steadman et al 2015 a paper from work foundation on fluctuating conditions and work.

Do think we need to start raising awareness with MPs re particular probs of lupus and working know if young people excluded from work who then have difficulty getting benefits. Think little consideration given to lupus as mostly affects women

Anyway must stop only to wish you well and peace of mind as you find solutions ..

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Hi Milliecox,

Wonferful, thank you! I will certainly have a look at those papers you mentioned to see if they can help me to have a bit more clout when it comes to trying to get some help.

I totally agree, there doesn’t seem to be much help out there when it comes to dealing with employment issues associated with lupus.

I’m genuinely really struggling at the moment and quite often feel confused, both my my own health fluctuations and by the “system”, that seemingly needs to be followed when returning work.

Thank you again fur talent by the time to respond to me xx

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Hi I am also a nurse and have not been able to work full time since my early 20’s, am now 39 yrs old.

I used to work in children’s A&E at the start of my career but now am a practice nurse working 2 days (recently cut down to two 6 hr shifts as was really struggling esp on a morning so I start at 10am now so that I get a few hrs to be able to actually move!!)

There is no way on earth I could manage to work anymore than this let alone full time!! My hands are the main prob and fatigue exhaustion and general pain etc. I take 30 tabs a day inc hydroxychloroquine, prefer and mycophenolate and zomorph .

The hydroxychloroquine can take up to 3 months to kick in so yes I’d ask to discuss steroids.

I don’t want to stop working until I really have to (tho I am off sick at moment has been a wk now for a flare as I couldn’t get out of bed for 5 days and still not great).

I also don’t think I’d be entitled to anything if I didn’t work as sometimes I am ok and don’t know on what grounds I’d say I couldn’t work??

I’ve been known to work one handed when my hands been so bad I can’t move it! I also try really hard not to be off work sick so have to be really bad to not go in

So went on a bit ha!!

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Gosh Sara, I can really empathise with you! Last week I struggled so much. I don’t make good decisions when I feel so bad-it definitley affects your level of judgement !!

I really appreciate your honesty. I am struggling with it all as when I look at myself in the mirror you would think there’s nothing wrong-I almost believe the mirror sometimes and get into that really destructive “pull yourself together” mode. Being a mental health nurse myself you’d think I’d give myself an easier ride wouldn’t you? But nope! I do it to myself all the time and I know I’ve really got to stop!!

But then what’s the alternative?? Losing 2 days pay seemingly-which is a little grim! And comes with its own stressors!

I was talking to a colleague who suggested I put in to claim pip; due to me having a chronic illness and as a consequence of that having to cut working hours, but I’m not convinced I’ll get it! I guess there’s no harm in trying though, so she’s going to take me through how to complete the form.

Thank you for sharing your experience. It makes it more real for me and somehow helps me to accept my limitations a little easier if I hear of others who are in a similar predicament.

Xxx

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Back in my 20’s I did claim disability living allowance as it was back then to support myself with losing the hours I was unable to work anymore. But it’s bit different now think there’s 2 different components when I looked I don’t think I’d have come under either but def worth looking! I do have a blue badge for the really bad days and so I can park closer to work so that I can carry on working.

I’ve been diagnosed 18 yrs and I still have the times of denial I say to my partner ‘ I think they’ve got it wrong I don’t think I have these illnesses and need all these drugs, what if they are wrong and I’m taking these awful drugs and I don’t need them!’ I have aps and sle.

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I liked the idea of employee passports mentioned in the Steadman et al paper

theworkfoundation.com/wp-co... and have heard that although Bt has stopped using them they are under consideration. They set out what the employee needs and I think this helps both employee with LUPUS and employer and those doubtful colleagues who do exist to a greater or lesser extent. You may also like to look up the GMC's recently started campaign 'valued and welcomed' trying to get better support for doctors with LTC and disabilities - will pass anything on I see and will post paper when accepted. Good luck

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Thank you so much Millecox :)

I would be so grateful if you would do that for me. Everything helps!!

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