Hi I have just returned to work after 3 weeks off after a hospital admission (collapsed then had stoke like symptoms). Was told to come off Steroids then put back on them after all my symptoms of GCA came back with a vengeance. I have been pretty poorly with the steroid withdrawal too.
I have been back on 50 mg of pred for the last week and the symptoms such as headaches, vision problems and jaw pain have gone although I can still feel slight tenderness when I chew and seem to get a mild headache at about 4pm.
It’s just that I’m really struggling with the fatigue, my body aches and although I was told that I could reduce my hours when I went back it’s just not happening. Yesterday I worked 8.15- 5.00 pm and only had a 15 minute break due to attending a meeting on my lunch break and then staying behind fir an event which all staff were expected to attend. My normal hours are 8.15- 4pm. I know this was a one off but I came home exhausted and just wanted to cry. My job involves being on a computer all day.
I don’t want to complain, but I am just struggling to concentrate and everything is a huge effort. I just feel so slow. Before I was told to come off the Pred I had lots of energy and was able to manage work. Now I just feel that I have made a mistake in returning too quickly. I am only 52 and need to work but at the moment I don’t know how I can cope with full-time hours. I’m eating really healthy but my body is so swollen and puffy. I’m struggling to sleep and I’m getting night sweats. It would be great to hear any advice about how to manage work with GCA.
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Hazeleyes48
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Hazeleyes, you have every right to complain: no wonder you are struggling! You must speak to someone in your HR department to explain your position and to get all the help available. While I understand that you have to work you aren't doing yourself any good and are risking relapse while you are sompoorly. Please involve your doctor/rheumatologist/company in working out a plan for the immediate future with regard to working starting with a period of more time off to give your body a chance to make progress and then a sensible staged return.
I appreciate that the US system may well be different from that in the UK and others will be along to give more targeted advice and suggestions. In the meantime, here is a link posted a while ago by one of our experienced members:
I live and work in the UK. I had a Return to Work meeting and was told that I could leave earlier for the next month but I’m not sure if I should make a request to work part time until my steroids are reduced. I have other illnesses one of them being Crohn’s disease but I have always managed it and worked. I really don’t want to end up in hospital again but just want a bit more balance in my life.
This subject comes up quite a lot this is CAB info - have a read through and then maybe discuss again with work..are you in a union, or is there a rep in workplace - they are usually spot on with things -
Thanks DorsetLady, great idea I will join a Union. It’s the unpredictability of this that worries me. I don’t want to give up work but I don’t want to get stressed and not be able to do my job properly. Thanks for the links to the information. I really appreciate it.
Kendrew has written some fantastic comments about working and realistic expectations when you have PMR/GCA - and not wanting to retire but it being the sensible thing to consider.
It is worth ploughing through her replies to read them
If only everyone would join a union! They were originally set up to represent us vis a vis the powerful and after a period of over-mightiness, that's what they seem now to be going back to. I’ve always found them entirely helpful and effective. It’s like that brilliant advert of the bear who sits in the way of the ant: “excuse me” (ant’s tiny voice, not heard by bear) then a stream of ants - “EXCUSE ME!” - “ Ooh sorry, !” Bear! 😉
I'm so sorry! I don't know what led me to think you are in the US!You will have read the other replies which are extremely valid and I urge you to take note. I do appreciate that you are in a difficult position. Your employer doesn't understand the severity of your conditions as leaving early for a month is insufficient for your needs. A conversation with your rheumatologist/doctor may provide support.
It would be worth ringing Citizens Advice for how to proceed.
I hope you are able to resolve your problems soon. 💐
If you have GCA you have a serious systemic disease and you should be signed off work - not working such long hours. It is covered by disability law in most countries including the UK and so you do have some rights. If you continue to ask your body to do too much you will only take longer to recover and may even become far more unwell.
At these higher doses of pred there is also a question of judgement being impaired - so it also relates to the context of your duties.
My doctor wanted to sign me off for another week but I thought I would be able to cope. My manager is doing their best and encouraging me to have breaks but this isn’t always possible. I think I might request to see HR or ask if I can see Occupational health.
I am struggling with tiredness and my head feels muddled due to the Preds.
Which gives weight to my comment doesn't it? Feeling well at home and feeling well at work are miles apart - and the idea of a graded return to work is to try to compensate for that and find what you ARE able to do. And "it isn't always possible" isn't good enough if they want you to succeed and come back.
You cannot be working as effectively as if you were well - that is neither fair to you not to the employers. You really do need to get HR and OCcy Health onside. And the union rep if you have one.
Might be worth reminding your employers about the law on hours worked etc as it sounds like they might just be forgetting those and nit giving you adequate breaks
Failing that attend the meetings but fall asleep! Play some silly ‘games’ to try and get them to see how poorly you actually are
Sorry can’t be more help (bit like your employer!)
It’s horrendous I know. I was 54 and working etc etc when my GCA flared up. Many people post here saying they either don’t have time or can’t cope financially with stopping work or other commitments. I dare say that if they had been told they had had a heart attack, or broke both legs and needed to rest, they would. GCA is a mystery disease where it is presented that you just take these steroids and you feel better. You want to soldier on, l completely understand that, but the reality is that this is also a serious condition and to try to ignore it is playing with fire. Pred only deals with the inflammation not your autoimmune activity. You risk getting worse or needing to stay on this hellish dose for longer and you end up being forced to stop. The other thing to consider with high dose Pred is that even though you feel you could carry on you are likely to have reduced judgement and concentration, even if your brain feels like it’s whizzing along. It’s possible others will see you are not yourself too. If you had a job where you could pace yourself all day and opt out of things if you needed then maybe keeping going is an option. However, it doesn’t sound like you do. You need proper sick leave and to see the stroke like episode as a warning. Sorry to go on, it is upsetting to be sure, you have my sympathy.
I'm still working (and am in the US), but at reduced hours (32 vs 40) & totally remote. I find the latter gives me some leeway to take a nap, take care of medical issues, take any needed breaks, etc. If you're a computer jockey like me, it might work out for you too.
A lot depends on your company, its HR department & your manager. I consider myself pretty lucky in that respect, but really did have to do quite a bit to get all that in place.
Do you have any PTO left? I burned mine up last year, and we were considering a short-term leave. Didn't come to that, but I was working on it just in case. What's your company policy on STD & LTD?
Many things to dig into. And I realize you may not have the time or energy right now to do so. ☹️
The first thing I’d say is, accept your doctor’s offer to sign you off sick. I think you need to rest, reflect on your situation and draw up a plan of action, and you can’t do that when you’re so exhausted.
I think the others have said it well: follow up the CAB link and maybe contact them; ask for an Occupational Health appointment and if possible join a union. I know some members here (like Winfong) are able to work from home. Would that be possible/ desirable for you?
Lots to think about and I think you need the space to sort things out. You’ve been through a very bad few weeks. Let yourself recover and go from there.
Sending you every best wish. Take care of yourself xx
I feel for you. I was lucky enough to be able to stop work. I was a nurse in a nursing home so no day was light or easy. Take all the advice off here and put yourself first. Good luck. X
Click on 'Posts' at top of page (above your post) and then in the search box type:- To Work or Not to Work, it should come up with one of my posts about my conflicting issues related to 'working'.
I also have a follow up post that might be helpful :- Back to Work??
I know I have written numerous responses on this topic but not sure how easy they'd be to find.
Luckily it did show up when I looked, although part way down a list preceded by other titles totally different. I have never successfully found a thread this way before! Here it is:
Thanks so much everyone, all your advice has been invaluable. I will respond to each of you too. The support on here has been incredible. I really do appreciate it 😀
Anyone who has replied to this post will get a notification of further replies, including this one. Please preserve your energies for now. But do let us know how you get on. ❤️
Please go back to your GP and get signed off for a while to regroup and feel better.
Don't forget your GP can also issue a fit note which states something like half days only or reduced hours.
Absolutely get your employee healthcare or occupational healthcare people involved - they will be far better and can be specific unlike HR who tend to state policy which isn't always specific enough for chronic conditions.
Your condition is likely to come under disability regulations therefore you can request reasonable adjustments such as home working, regular breaks, time off for hospital appointments. You HAVE to self advocate and stand your ground I found.
I found this last 2 years that I am a number to work and they will replace me if I leave. They do have a duty of care to you so make them do it and protect yourself.
Don't reply unless you're feeling better! Sign yourself off on Monday and ring that GP!
I definitely need to do something as I know deep I can’t carry on like this. The thing is every day brings different challenges. I was ok at work on Friday as I finished a bit earlier and took breaks away from the screen. Yesterday I went to my daughter in laws baby shower and I just struggled with tiredness so had to leave early.
Today I feel like I have got flu. My shoulders and legs ache and I’m very lethargic.
I think because I’m trying to be positive others think I’m ok. I always try to give 100 percent but I just can’t at the moment which is frustrating but I have realised if I don’t listen to my body then it’s going to get a lot worse.
Life is short and health is precious. You are right we are all just a number but I have realised this is my one and only life and no job is worth risking my well-being for. No one is going to fight my battle but me.
I just need to be tougher and start to stand my ground.
Oh bless you. Take as much time as you can and dont go back until you are certain if that's possible.
Where work is concerned just keep in mind your worst days and base everything on that - not your good days.
I've lost some friends along the way and found some great ones who get it when I have to cancel or stay for a while then leave. The rights ones are just pleased to see you and will make it easier.
Once you get your ducks in a row it all gets a bit easier. Saying no also becomes easier as does I'd love to but can we tweak the plans or can I join you later?
Hi everyone just a quick update. I have been signed off work again. I saw the doctor yesterday and told him how much I am struggling.I had a bad weekend feeling very lethargic with aches and pains and fever. I went into work on Monday but had to leave early as I felt that I was going to pass out. My brain feels all fuzzy and I can't seem to concentrate on anything. The doctor thinks I may be depressed. I do feel anxious but think it is because I have been worried about my job and all the changes that is happening to my body. My heart rate was very high and he said my red blood cells are small.... so I need to go back for further tests on Friday. The last few months have been a roller coaster but I am learning to listen to my body and try and take back some control. This group has been invaluable.
Sorry to hear this -but being signed off work again is a good thing (even though you may not think so).
Hopefully will give time to sort out tests, and you to have more time to get your head around things.
It’s natural to worry about your job, but the company won’t collapse because you’re not there -they will cope. The most important thing is for YOU to get better, however long that takes.
Thanks Dorset Lady you are right.....I have realised its going to take time. I need to stop worrying about pleasing other people when its putting my own health at risk. Thanks for your wise advice.
I think your doctor is being a bit naive about the effects of the dose of pred you are on! The fuzzy brain and inability to concentrate are typical pred side effects at moderate and high doses. It can also raise your heart rate. It also makes you more prone to catching infections - a possibility for the aches, pains and fever.
But being off work is a good thing for you. Make the most of the opportunity to rest.
I do feel like a huge weight has been lifted regarding work even just getting there was a struggle but my main concern was making mistakes due to my fuzzy brain. The steroids have had a huge impact on me, especially when they were tapered so quickly before being elevated again. I few months ago I was confident, independent and would often travel up and down the country to visit my grown -up children alone, l now I am nervous of getting on a 10 minute bus journey on my own but I will get there.
Yup - all fits with high pred. There is no shame in being off work if you are ill. GCA is a serious systemic disorder and high dose pred is a powerful drug. The two together - very few people manage to cope with work. I wasn't on that much - I couldn't have coped with commuting although I did manage to work. But instead of being a pleasure, it was hard work making sure I wasn't writing rubbish!
Hi not sure if it’s the right place to post but just received more abnormal blood tests. Apparently my serum iron levels are 7 which is quite low but my white blood count is above 14 which is quite high. I have been told a doctor is going to ring me during my pre arranged doctor’s appointment on Tuesday. It seems to explain why I feel so tired and weak. Just wondered if anyone else has had low iron levels whilst on Pred. I had a full hysterectomy 9 years ago so no longer have periods. Any advice would be welcome.
It is certainly pretty low and definitely would account for a lot! There is a form of anaemia that is associated with chronic inflammatory disease but to know if it is that there are other test results they need to take into consideration. I'm a bit appalled that it wasn't spotted in hospital though! Hb doesn't fall that fast unless you have heavy loss of blood in an accident or operation. Have you done the colon screening poo test in the past?
If you want more comments and advice you would be better starting a new thread - few people will see it in an existing thread unless, like DL and me, they followed it.
Hi PMRpro I have Crohn’s disease and Barrett’s Oesophagus so the anaemia may be due to that. I will see what my GP says on Tuesday.
In the hospital I wasn’t told my what my blood test results were just that they were unremarkable. It does seem a big drop though. In a way it’s a relief as I was struggling to understand why my energy levels have decreased so much in just a few weeks. I was beginning to think I was going mad especially when my GP thought I was depressed when I had to ask him to sign me off work the other day.
The most likely is some occult bleeding. But anything under 10 for Hb should have conjured up something other than unremarkable - and even above that that it was lowish since 12 is bottom of the normal range for women. I can't imagine they didn't do a FBC.
Oh Hazeleyes 😟If it’s not one thing, it’s another….! I’m sorry you have something else to be concerned about - the good thing is, of course, that the bloods are being followed up and dealt with 😊
Thank you, I am just going to try to relax until I speak to the GP. I was feeling really guilty about letting work down as I hate taking time off but now I feel that it was definitely the right decision to get signed off whist I rebuild my strength. I am struggling to stay upright at the moment but I am remaining positive 😊
Thank you. I have just joined my Union too incase I need extra support regarding my job. My boss is trying to be understanding but I don’t think she really understands how poorly I feel. I have always managed my Crohns well and am not someone who takes time off work at a drop off a hat. But at the moment I am struggling to do simple household tasks without getting breathless and needing to rest.
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