Can anyone tell me how GP's in general deal with signing off patients with PMR/TA - I was diagnosed in June, I have had a total of 3 weeks off and when I went back I was advised by my GP to go back on reduced hours. This has not really been happening, I can reduce my hours but not my workload, therefore, unable to reduce my hours. OH have also suggested this and working more from home and although my employers initially supported this - are now back tracking.
I have this week had another 'flare' - headache and tender in the temples and groin, knee (both of new to me), back and neck pain so have gone from 16mg back up to 20 mg on GP's guidance, I believe the stress from work is not helping.
So I am considering just being signed off for a longer period - how have others found their GP's with this? (I think mine will certainly sign me off for a month or so) and if others have done this has it helped their health.
Sorry to put another post up - just struggling a little at the moment.
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lesley2015
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Sorry to hear you're struggling at the moment. I have been down this road. Spent a lot of 2015 on reduced hours and worked from home a bit but just was whacked out all the time. I have been signed off now for about 2 months and am definitely feeing a bit better. I am still reading emails but not responding unless it's a major issue. When I spoke to my doctor about being signed off it was a case of how long do you want, a month or two months. I have been struggling with PMR for two years and am currently on 14mg/day of prednisolone and 20mg of leflunomide. HR are now asking if I will be returning or seeking medical retirement, I'm 59 so retirement seems a little early but I now have some sort of home life and have some energy too. I still get whacked out but that's probably from feeling a bit better and trying to do more! So yes ask your doctor for more time off and be honest with him/her in saying how you feel. I really struggled to ask for time off and tried to battle on but the body told me I needed to slow down. Good luck on your journey.
My GP initially signed me off for 2 weeks at a time. This went on for 3 months, then it went to 2 months for 6 months. After that, I had to attend a meeting with the Benefits Agency who said I was not fit to work.
That was 12 years ago.
Talk to your GP and tell him what is happening and ask for longer certificates. Please let us know how you get on.
It's probably something that doesn't affect that many of the members of the forums YET! Those who are still working struggle and those of us who are lucky enough to not have to go out to work admire any of you who are managing to work.
I can't speak to the question as to how GPs go about it - being freelance meant I wasn't going to be signed off work anyway and then we "retired" early and moved abroad. I have that in quotes because we both carried on consultancy as a top-up and to keep our brains in gear - but as of Jan 1st 2016 my husband has given up his (small) business altogether and is a proper Italian/German pensioner, the UK state pension is still to come. Last year he worked for 80 euros in hand, the rest went in Italian taxes and contributions and paying the standard charge for a tax advisor for a small business - doesn't matter how much you earn in it!
I will, however, speak about working with PMR/GCA and the concept of early retirement when the option is there.
There are two perceptions: one is that only elderly people develop PMR and GCA (the average age of onset is claimed to be 70!) and the second is that too many doctors believe that once we are taking pred everything is back to normal and so there is no reason not to go to work.
We are doing our best to explain to doctors that no, pred reduces the pain and stiffness considerably - but actually a 70% improvement in what we have initially still leaves a lot of discomfort and sometimes considerable disability which affects us working, particularly the morning process of getting out of bed and ready for work and, even more so, any commute. There is a version of prednisone that banishes that morning problem - it isn't approved in the UK for PMR and anyway is so expensive that they won't prescribe, it was approved for RA, the directive is not to use it. If you include the working element however it probably does become cost-effective.
GCA is covered by disability legislation - but even that is limited in application. Oh yes, you can have shorter hours - but we'll still expect you to do the same workload (so we'll win by getting the same work done for less pay, but they don't say that do they?). Not sure about PMR - which often provides a bigger physical obstacle.
There are also two aspects to working with GCA/PMR: both of them cause fatigue and brain fog which are not relieved much by the pred (apparently some doctors think that means pred isn't working!), but both are managed with pred which has, as potential side effects, the power to cause fatigue and brain fog. So you are in a Catch 22 situation. At higher doses of pred - are you actually mentally able to do your job? I never had above 20mg and I struggled managing cooking dinner never mind carrying out a complex management process at work. I was lucky, I was a freelance translator - work was the next room and I could go to the gym in the morning which allowed me to move fairly well for the rest of the day. I could never have got to an office for 9am - and I know I read some stuff 5 (or more) times before I understood it or was happy I'd done it correctly! Can you really make executive decisions that are balanced and correct? Being on long term pred is enough for some courts to excuse you jury duty - because your emotions/thinking ability may be impaired.
Part of the current problem stems from changes over the last few years. We all now have to work longer before we can claim state pension - which is taking us further into the age group where GCA/PMR becomes more common. That isn't to say you don't get them much younger - although some doctors will deny that. And you have also to factor in the changes over the last 6 years about benefits and sickness - it is increasingly difficult to get sickness benefits because of the "tests" and interviews they supposedly carry out. If you can breathe unaided - you are fit to work!
If anyone can afford to retire now - do consider it. My husband took early retirement from the NHS as soon as he thought we were going to be able to manage financially until we got state pension. It meant he lost 5% per year from his work pension for going before 60 and it wasn't that much anyway. Our income has been much lower, particularly since the last financial crisis turned the tap off on my work, but our quality of life has been far enhanced. The costs of living change - no more commuting costs, clothes last longer, food costs fall because you have the time to shop and cook and need fewer convenience foods. Daily shopping provides exercise - and you throw away very very little. I can heartily recommend it! You do find all sorts of things to occupy your mental capacity and fill the time and you will wonder how you ever found time to go to work! The relief from the stress of daily work makes a big difference - GCA and PMR do not mix well with stress, whether it is physical or mental.
As an aside, Vasculitis UK has a regular link to a benefits newsletter where you may find useful and interesting information. It comes from this group:
Vasculitis UK has services for its many young members - they cover all vasculitides, GCA/PMR is just one of a broad group, most of which affect younger people of working age.
I can completely understand your situation as throughout PMR I have worked and there have been numerous days when I wanted to throw in the towel, stamp my feet and say I dont want to play this game anymore!! 😁. However I am the younger side of the "guidelines" at 49 so I still sadly have to work. Recently I had a flare up which hadn't happened before so I felt rotten. Fortunately with taking a higher dose of meds and some great support and encouragement from this forum, I feel better but I took this as a time to highlight to my employer what I struggle with every day. A heart to heart may work also if you can have a one to one. I do only work for a small company so was easy to sit down for half an hour with the MD. May be worth a try but as you say this stress wont be helping. Good luck 🍀
I am currently off sick due as much to stress , I have been off for 7 months now and o h have basically said there will have to be so many risk assessments put in place that they cannot place me in current job, I am now on re deployment register awaiting another meeting and they will consider finishing me through ill health , not best option but will certainly reduce stress, my union representative yesterday suggested I request counselling both from my g p and work.
Hi ,I was ill health retired from my manual job in 2014,i have pmr gca ,addisons disease and type 1 diabetes ,Hughes syndrome aka sticky blood .I was off for 2months in 2013 and was referred to oh ,who suggested after 1 year off maybe ill health retirement may be an option I could use .I was 51 at the time but lucky that mortgage nearly paid off and family fled the nest so did the sums and decided that it would be best option for me and the company.I was awarded top tier of the pension which was a final salary one ,My wife works part time and ive got my taxi licence and do a school run which is driving only an escort looks after kids.I do about 12 hrs a week I love it. Gives me a sense of purpose and tops up my pension.I was lucky my firm ,I worked on a light railway on Tyneside ,were really good during the whole process,i realise some of you are having bother with firms. As pmr pro says check if your illness comes under disability equality act 2010,if so you have protection. Good luck to all.
HI I am 57 and was diagnosed three years ago. My GP signed me off two weeks at a time and was on 40 mg pred. In all I was off five weeks went back on my own accord. This was a mistake as I was not really well enough. I could have done reduced hours but like you it just makes life stressful. My advice would be to get signed off til you feel able to cope with your home life. I am on 2 mg now. If I have a flare up I go to work then to bed when I get home. Take care.
Hi. I was diagnosed Gca & Pmr at age 49. Struggled with side effects of 40mg of pred from the start. Brain fog insomnia anxiety and memory difficulties were the main reasons I could not continue with my NHS job. I also have steroid induced diabetes & fibromyalgia. I was referred to Occup Health after a few months off sick and they confirmed with GP etc that I was unfit for work. I had a problem getting anyone to actually say I was fit for work so no problem with sick lines. Last Sept at age 50 I officially retired on ill health as there was really no other option. I now receive my NHS pension. I have a 16 year old with special needs to look after too. I wouldn't say I feel much better now I am on 10mg of pred but going in the right direction and making time to rest each day is still essential for me. Don't know where I would find the energy to work! However I do still miss the routine of going to work after 33 years but I am told that will change in time.
Hi, I've just joined the forum and spotted your post so this is my first post here (apologies for any blunders).
I was diagnosed in July '15 with large vessel vasculitis and inflammatory arthritis. I was started on MTX then, and in September I was started on prednisolone 60mg daily initially. I only work 3 days a week and kept on working but by the beginning of October I was shattered and had no patience and trying desperately not to let the thoughts in my head spill out of my mouth. I work in customer service and its not really good practice to tell customers that "frankly my dear I couldn't care less about your problem". My rheumatologist said I should ask my GP for time off so although it went against the grain with me, I did.
I firstly got 2 weeks off from a locum while my GP was on holiday but when he came back he signed me off for 2 months with no problem at all and was very sympathetic to my problem. I honestly think that having the time off has not only helped me rest properly but has also helped me reduce the pred from 60mg to 10mg with no problems (so far at least I'm sure it'll happen soon!)
I start back at work on Monday on a phased return so will have to wait and see how that goes. I don't want to get so run down again and not convinced work really understands. Time will tell.
I would be quite happy to retire not if I could but sadly will have to wait another 2 and a bit years for my state pension and 2 and 3quarters years for my work pension.
I would say definitely take time off and use it to try to get your energy levels back up. Work will be there long after we've gone and like me, you're still on a learning curve re all this.
I have PMR and had to have 4 months of sick as unable to return to work at all .Had OT assessment during this time and when I was ready did a phased return to work over 6 weeks.
I did not think I would be able to return to my job I am unable to do some things I did and use the Bus to get to work as I don't drive. I used to walk to work and back 3 miles a day but those days are long gone.
I am being sensible ensuring I don't bring paperwork home and say if things are getting to much.
I could have had longer of if I wished , I used the last two weeks of sickness as time to start building my strength up and getting out and about.
Please be careful and don't force it
Its really not worth it
Your health and welfare are more important than work.
Thank you all so much for your comments, each and every one is useful! Feeling a little better today and my pred dose has increased, but realisation that the journey is definitely going to be longer than anticipated.
Thank you for the links PMRPro I shall have a look, but anticipate another couple of weeks off soon.
I wish you all well and thank you all again for your support.
Thank you very much for that Suetum - I knew about GCA and some PMR is really GCA but we have met with GPs who insist it is "well managed with pred" so they won't provide documentation for patients, won't even sign them off sometimes.
If you look up the definition of a disability under ACAS I am sure you will find a printable version. The definition is a physical or mental impairment that has a long term adverse affect on a persons ability to perform day to day tasks.
Although Pred controls the worst of it most of us cannot live as we used to
Thank you, I will look it up tomorrow and you are so right, even we try so hard to ignore it, we most certainly cannot ignore it from day to day life. I started on 40mgs per day last May, also not being diagnosed for at least 3 years with terrible pain. When diagnosed went into GCA, now affecting my optic nerves with eyes. Cross is not the word....., as I am a photographer. I am now on 12mgs, although I did go down to 8mgs, not suitable for my body. So sticking to 12mgs for now. Maybe sometimes we need to listen to our own bodies. But again thank you for your reply.
HI - Just a little update for those who joined this discussion. Back at work on 17mgs, first week fine, second week - temple pain, reduced vision, back up to 30mgs! Feeling so frustrated, so was it tapering down (only dropped by .5mg) or the stress of work ....................... ???
I cannot get below the 'magic' 17.5mg it appears , or at least not and work ....
GP sent me to A&E eye specialist centre today, eyes swollen and blurred, nothing found only a sarcastic doctor who said at 56 it was unlikely to be pmr/gca grrrrrr........ not what you want to hear when you have been on steroids for 9 month. Spoke to my doctor later who said he sounded an idiot!
So hoping steroid increase will reduce blurred vision and painful eyes.
Feel like as many others, that I am on a continual roller coaster that always starts at the beginning again!
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Does it sound like PMR? 
Breathlessness when walking up slight gradients/stairs
