Working with GCA and Polymyalgia Rheumatica

I have often said how lucky I was to be retired by the time I was diagnosed.  I know others with the t-shirt will be along to give account of their experience.  But I think you would be best to be officially off work for a certain length of time while you are on high dose pred.  It can affect the way you think, "brain fog" is how some describe it.  I was excused jury duty when I started at 15 because I felt my judgement would be clouded and, unfortunately, I would probably fall asleep during any proceedings.  So, depending on your work you may be best to be signed off for at least a few weeks while your symptoms are brought properly under control, and then if possible return to light or part time duties.  I do think, if the nature of your work permits, you should keep on working to the extent that it doesn't harm you because PMR/GCA are awfully isolating and being out with others even in the workplace can be a great morale booster.   So much depends on your own condition, how you react to pred, and how understanding your bosses and coworkers are.  

Gosh no wonder you are struggling. I’m 62 and diagnosed in January. I am retired and know I couldn’t have coped in my old job. I lead a pretty normal life now but do have to pace myself. I hope you have some sick time to recover a little. Depends what your job is but I would talk to occupational health about maybe lighter duties or shorter hours if that’s possible. We’re all different but listen to your body and pace yourself accordingly. Best wishes. 

Thank you both - I do have a very high stress job - global event manager at a high tech company - the good news is I do have very understanding management.  I will be taking this one date at a time.  anxious to hear from others.  Not sure at this point having just started the meds if it is the disease or the meds causing the pains, fog and headache!

 

Sorry to hear of your diagnosis, but welcome to the forum! I'm sure you'll find everyone here very friendly, helpful and knowledgeable. 

I was diagnosed with PMR towards the middle of July (15mg pred, now on 10mg). Like you, I'm also 60 and working. I was very fortunate, though, in that I seem to have adjusted to pred fairly quickly and also I can be flexible with my work in that I can go in late/leave early if I'm not feeling well (plus, I work from home for 2 days/week, which is much easier). I do still have a fuzzy head ("pred head"!) which is not good for concentration! I just do what I can, and don't beat myself up about the things I can't do, or things that I do wrong. 

How are you coping with prednisone? What is your dosage? I expect with GCA & PMR you'll be on a higher dose, so you will have more to get used to. Can you take time off work or be flexible with your hours, especially initially? It's so important to put yourself first; there's no point in 'soldiering on'. The key thing is to look after yourself! 

Let us know how you get on. 

 

I don't have GCA but was diagnosed with PMR just shy of 2 years ago at age 61.  I of course can't say how the GCA affects work but can at least give you some thoughts that most likely relate.  

I initially worked for 3 months with a lot of pain prior to diagnosis and struggled to make it through the day.  Mornings were a struggle just to get dressed and ready for work.  My work is split between office and making deliveries - physical work.  It got to the point where I could barely do my job anymore and was exhausted by days end.  I was lucky to get an hour or 2 of sleep per night because laying in bed was so painful.  Most nights were spent in a recliner.  Once on Prednisone it was like a miracle with pain virtually gone.  The mistake was thinking I could continue to work at the level I was used to.  It's a real balancing act between the Prednisone dose you are currently taking and the level of work.  In my experience, I needed to find the level of work that was tolerated by the PMR with the prednisone dose I was taking at the time.  The lower the dose goes over time the more careful you have to be with the work load or the inflammation becomes more than the prednisone can handle and you get a flare up, which you don't want.  Between dealing with bad instructions from doctors and listening to my body, it took a year before I could really say that I felt I was able to work consistantly at the same level.  That's not saying it's at the level you may want it to be.  

Currently I'm at 9 mg of Prednisone, working my way towards 8.5mg.  I've probably had to cut my physical labor at work or home by 50% and have to watch that I don't overload myself in the office either.  Stress has an equally bad effect on me at work.  I need lots of rest as well or I don't tolerate the work week very well.  It's tough to adjust and still keep going full time at work but it can be done if the employer is willing to work with you.  The thing is everyone's situation is different so it's so hard to know exactly how it'll go.  The big thing is to reduce your prednisone dose veryyyyyyy gradually when it comes that time,  Don't let the doctors rush your reduction or you'll have flare after flare.  You'll be more apt to have them because of still carrying on a full time job.  Good luck!

I managed to carry on working just with PMR, however I did have the opportunity of working from home and I did not have GCA which is a nasty illness. 

Hi MK, welcome to this CRAZY (if not scary and frustrating) journey! I too, am new to this, about 3mo. I'm 67 (thus retired), and I too live in the states, more specifically California. While I didn't have to worry about my job when first diagnosed, there were many other things in my life I needed to alter. I'm struggling with all the side effects of prednisone, almost as much as pmr! I can't imagine having to work (outside my home) at this point. If you care to share, what symptoms are you experiencing? I take it you're not yet on prednisone? Despite all the negative side effects, it DOES help w/symptoms of pmr, in my case, within hours of my 1st dosage!! Please keep in touch and let me know how you're doin'. Best wishes, Lynda

Thank you all for your information, it is truly a comfort to hear from others who have gone through this.  I have not yet seen the Rheumatologist but my internist put me on 20 mg a day starting Monday. My Sed Rate was 95 and the C-Reactive Protein was 3.1 on Monday.   I have had a slight improvement in arm pain and hip pain since Monday but my head not any better and overall weakness and exhaustion continue,  I will keep you posted.  I also had my thyroid removed 5 years ago and I am on Synthoid for that, I see the Endocrinologist this afternoon and have type II Diabetes as well that is well under control but will need to watch my numbers carefully, were last at 6.2 A1C.  THANK YOU ALL!

Hi MKSimpson, so sorry to hear of your diagnosis,

I work full time too, have been diagnosed Nov last year, I have a physical job, vet nursing and dog grooming.

I have never been pain free since diagnosis, so it is harder to work, but am able to, even though in pain.

I have struggled with emotional stuff at work, but have learned to cope, also with brain fog, caused by steroids.

Anyway it is O.K to keep working for me hopefully you too!

I worked for several years with PMR - but I was a freelance translator working from home and, while occasionally I would get urgent work that meant 12 hour days, it was just sitting at a computer! No commute, nothing physical to do. But even with "just" PMR (no pred) I can remember being slower than usual and having to read things repeatedly to be sure I had got it right. With pred (after 5 years) the brain fog slowly did improve, but it wasn't immediate. And your judgement is definitely impaired - whether the PMR/GCA is doing it or the pred.

It depends what your job involves - but GCA is a serious systemic illness, as serious as a heart attack or stroke in many ways or real genuine influenza and then with the fatigue factor of the autoimmune disorder on top. In the last 9 years on the forums I have heard quite a few patients with GCA say they must keep working - and most of them have found within a few months is just isn't possible - not least because the management and colleagues may be sympathetic at first but when it drags on they begin to resent what they perceive as carrying someone. And many have found that stopping work by taking sick leave has helped them recover - PMR/GCA feeds on stress and however much you enjoy your work it is frequently stressful in one way or another. When you have GCA it is physically stressful - never mind anything else.

As has already been said, if your doctor thinks you have GCA then there are 2 things wrong at present: for one thing you need to see a rheumatologist as a medical emergency - GCA ranks alongside a heart attack or stoke in that sense as your sight may be at risk if the equivalent of a stroke affects the optic nerve. The other is that 20mg is nowhere near enough if it is GCA. I do realise that the diabetes complicates that - but losing your sight is even worse.