The last few years have been a bit of a mare. Diagnosed with Celiac (2021) followed by GCA (2022) and now Polymyalgia. I've managed to cope through all of this and work but I've hit a brick wall now. I'm on Steroids (12.5mg) and looking to move to Methatrexate.
The thing I'm struggling with the most is fatigue. I sleep more than I'm awake! I've tried to go back to work but I have to go back to bed for a couple of hours after my shift because it wipes me out. On my day's off I'm usually in bed all day. If I do manage a couple of everyday tasks it completely wipes me out again the next day.
Does anyone else suffer from this and just feel that they're not capable of working due to this disease? I'm 63 next month and can't see a way of working another 4 years.
Are any of you in a similar position? I can't afford to leave work but I don't think my health will thank me for trying and it really isn't much quality of life?
I'm not sure if Polymyalgia is classed as being eligible for sick pay or any other type of benefit?
Thank you for reading and any thoughts would be appreciated.
Helen
Written by
TeddyCR
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Unfortunately fatigue is a major part in ant autoimmune/chronic illness. Working with your issues I'm not surprised you are wiped out.
Firstly has your employer taken all the necessary actions to improve your working conditions in accordance with the Equality Act. Guess you've discussed things with line management, HR/Occy Health and union rep.
This subject arises very often, maybe have a look at this members profile -some of their earlier posts on same subject -
You will also get related posts on screen which may help. Might have got more if you'd included the wording "working with GCA and PMR" or similar in title.
If you are signed off because you aren't fit to work then you are entitled to statutory sick pay and whatever your employer offers as sick pay. Doesn't matter what the label is. Perhaps a few weeks off would recharge your batteries? What is your employer's policy on sick leave?
PMR and GCA do come under disability legislation - and that means your employer should make necessary and reasonable accommodations to facilitate you being able to continue working - shorter hours, working from home if applicable, different duties possibly, improved working station, whatever applies for your job. Obviously there are some it just doesn't work out for. It is a shame you didn't go down this path when it all first started. Occy Health is the place to go as well as a union if you have one - not HR, they are on the employer's side and looking after their interests, not yours. Retiral on health grounds may be an option. Others will probably advise better there - I was freelance, you'll never have a better boss! Trouble is, no work, no pay, and no sick pay at all!
I'm not sure what moving to methotrexate is meant to achieve. For a small cohort of patients it works very well - and, to be fair, you have to try it to find out if you are one of that elite group. However - MTX made me so fatigued it wasn't true and I had to abandon it after 4 weeks to go to an international meeting and never went back on it as by the time that was over I felt human again. It might make things even worse. You haven't got to 3 years yet - seems reasonable to me, 4 to 5 years for GCA is very common and even longer for PMR, though your PMR will be part of your GCA, it can be a symptom.
Thank you. Rheumatoolgy suggested Methotrexate because I was on a high dose of steroids for a year for the GCA. Been off them 1 year and back on Prendisolone a year later. They're concerned about me being on Steroids for a long time because of how it affects your bones. I am worried about Methotrexate but also the steroids.
There are a lot worse outcomes than possible loss of bone density if you DON'T take pred. Ask DorsetLady or Grammy80 . There are ways of minimising the bone density problem - there are medications to protect bones. I have been on pred for 15 years, albeit at lower starting doses than are required for GCA but in 15 years I've had a lot more than you are likely to clock up. I've just started a course of bisphosphonate infusions - haven't needed it before.
Some doctors over-egg the problems without stopping to consider the ultimate adverse effect of inadequate pred which is vision loss.
Bet your cumulative dose of steroids is a lot lower than many on here - including PMRpro and myself… as PMRpro has said she has only just got to the stage where she requires a bisphosphonate. I took one for 4 years [being in the susceptible group due to family and personal history] alongside VitD /Calcium supplement and last DEXA scan was fine… no sign of osteoporosis.
I had already lost sight in one eye due to late diagnosis of GCA, and Pred certainly saved my remaining one… so I never had a fear of the medication, it was a saviour for me.
Gosh - you have been through so much - it makes me feel really bad for feeling sorry for myself. When they cured by GCA with steroids I was just so relieved and I hadn't had a stroke or lost my vision. I think my steroids are quite low but you have to go off your doc and rheumy. When I spoke to the hospital pharmacist she actually said that my inflammation markers were really high at 100 (they were 178 when first diagnosed with GCA). The medical care I've received has been really good but they don't sympathise - it's just - yes you've got this - take that and go away. Not always that simple x
About 6 week's ago - took 6 weeks to diagnose and go back on steroids. Was prescribed 15mg then reduced to 12.5mg. My mobility is a lot better, the back of my neck hurts all the time but I just slather deep heat on it. I can cope with most things but it's the awful fatigue that is causing me the most distress. I'm asleep in bed more than I'm awake ! lol
That's what I'm petrified about - losing my vision!! I've Osteopenia (which isn't too much of a problem). It took 3.5 months to diagnose the GCA and, after 2 weeks of steroids, I was fine. Although bouncing off the ceiling (I was on a higher dose at least 40mg). When I came off steroids I was very tired and then had severe depression & anxiety for months (which I think was a result of coming off steroids. Then really bad back pain (like sciatica) followed by the Polymyalgia diagnosis. You are so kind for replying and I really appreciate your advice - thank you !
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Pain while tapering 
Good days bad days
Re hospital bed
Prednisolone and insomnia
fatigue
