I have recently been diagnosed with PMR in December 2020. I was given Prednisolne (15mg) daily but am yet to start them. I initially thought I'd give myself a couple of days to familiarise myself with what I was about to start taking etc. Unfortunately I have read so much info on them that I have frightened myself into making a decision on whether I should take them or not. I work in a school setting and have to continue to go in during lockdown to look after key worker and vulnerable kids. We have had a couple of positive cases within the school and am worried about starting them because of how they affect the immune system. I am not currently having a flare of the condition as I was in the summer of last year and my inflamation markers are considerably lower than they were, nevertheless I'm still experiencing pain, but to a managable degree. There is one thing that is bothering me though is the headache that I've had for 3 weeks now. It's not in the temple so it's maybe not related to GCA but its there all day everyday. Am I doing myself more harm than good by not taking Prednisolone or should I try and hold off until this awful Pandemic is more under control. It's possible that it's due to all the stress of should I or shouldn't I take them at this moment in time. There is also the question of the vaccine. Will I be able to have it if I'm taking the Prednisilone and will it be effective? Could do with a little bit of advice from you guys. I'm in my early 60's.
Newbie help info: I have recently been diagnosed... - PMRGCAuk
Newbie help info
Of course you can still have the vaccine - and it is highly recommended we do. It will be the same as with the flu jab - the immune response may not be as robust as without pred but it will still happen.
Where is the headache? Contrary to popular belief, the headache doesn't have to be in the temples, GCA likes to affect the back of the head too, causing an occipital headache. Does the headache respond to ordinary painkillers?
We have another lady in the forum who works in a school - she is currently off work after a flare and having to return to 15mg but I'll leave it to her to tell her story.
Obviously you are not suffering as much as some - but waiting to get PMR may result in you getting to a state where you CAN'T work because of the pain and disability. There are doctors who say that not treating PMR increases the risk of it progressing to GCA - I suppose that is because PMR can be a symptom of GCA in some people.
Thanks for your response. The headache is all across the front of the forehead and eyes ( I don't suffer with migraine) it's like a flu, headache, with all over body aches and pains.
You are right in saying that I'm not suffering as much as some, and I'll agree with you there, but I have had a taste of that for 4 months before getting diagnosed by a rheumatologist at Guy's hospital in London when my husband had to physically lift me out of bed each morning and in and out of the car for weekly blood tests to keep an eye on my CRP levels, which peaked at 82, so no, I don't want to get to that degree again. The Naproxen helps a bit at the moment, while I'm flapping about taking the Pred.
Is the rheumy convinced about the diagnosis being PMR? It isn't often that naproxen works significantly in PMR but it does work for something that can be confused with it - we had a lady on the forum some years ago who had a PMR diagnosis but it turned out to be this other possibility - she'd had a lot of trouble when trying to reduce the dose of pred. Just wondered as it can produce problems similar to both PMR and GCA.But there are plenty of us who can sympathise with that level of pain and disability and believe me - we love our pred!
The Naproxen was given to me by my doctor while I was waiting for the rheumatology appointment and I still had some left so I've been using those. They have now been stopped as Pred was prescribed. The rheumatologist said she is pretty certain that it is PMR, although I have experienced other (apparently non A-typical symptoms) so something else could be going on aswell. She mentioned the pains and stiffness in mainly the top half of the body (neck, shoulders, arms) which is where most of my pain is but my bottom half ( feet, legs, knees, ankles and hips) are also at times affected. She said there was a scan that she could do that would confirm more, but decided that she wanted to start the treatment straight away rather than delay it any longer. My daughter thinks that I might have Fibromyalgia as well, but who knows.
I had GCA and that is where my headache was. They first diagnosed me with sinusitis. Not saying that it is GCA in your case, just that you should keep an eye on it.
That's really strange that you have mentioned sinusitis because I was going to ask if anyone experienced sinus problems with the headache. I have suffered from sinusitis for years and as well as this headache across the front of my head and eyes my sinuses feel very strange,with a sort of burning sensation.
We can all be a bit scared about steroids. I know I was and it's not helped by some medics wanting you off them asap. I reality, if you have pmr or especially gca you need them pdq. If the inflammation builds up it is much more difficult to deal with.
The information on this forum is invaluable and derived from a great deal of experience. Hopefully it will help to inform your decision making. Pmr is bad enough, gca is a whole other ball game and not to be recommended.
I found out about PMR by googling my symptoms, saw it was treated with steroids and thought I could never have anything so serious and promptly forgot about it. Months later I was so desperate when I finally got a doctor who diagnosed me I stopped at the drugstore on my way home, filled the prescription and took the first dose as soon as I got home.
I didn't even wait to get home - I stood in the street and took the first dose!!
I only lived a couple of minutes drive from drugstore, so nearly as good! I didn't know I could then take my second dose first thing in the morning (I had that first one mid afternoon) so actually spent about three days moving my time of dose back from afternoon to morning, Perhaps I'd have had an even better response than I did. I remember being out with friends that first evening and thinking, surely this isn't working already - it was about six hours after first 15 mg. Yes, it was working. 
I wish I could say I was out with friends this week. Another life. Damn pandemic.
I went straight from Boots to the coffee shop. Couldn't wait to get them inside of me!Paddy
Others have replied explaining why you should take Pred, but I'll add my two penn'orth worth ....left untreated it can lead to something much more serious... and the drugs aren't as scary as many would have you believe.
Have a read of this - no tabloid headlines, but hopefully more truthful - healthunlocked.com/pmrgcauk...
Thanks for the link. There is lots of useful information there, some of which I knew already by googling too much š¤ but I am grateful.
Hi Mugsie1. I was diagnosed with PMR in May 2019 and like you, extremely reluctant to start taking steroids. I knew only too well how serious the side effects could be and didn't want anything to do with them. My specialist explained that there was no other treatment and without them I would end up in serious pain, and the inflammation in my body would then be much more difficult to bring under control. As a teacher in a primary school working in the nursery class, I initially fought the immense fatigue and weakness I experienced from both the condition and the side effects of pred, but I wasn't able to cope with that level of stress, physical activity and daily pressure and manage the symptoms as well. After just 2months I had to take some sick leave.... I was off 15mths in total but managed to taper down to 2.5mg in that time. I returned to school in Sept as on that low dose, I was considered to be at no more risk 'immunity- wise' than anyone else. By Oct half term though, I was experiencing a flare that resulted in me eventually increasing my pred up to 15mg and taking more sick leave. At higher doses, I became immunocompromised again and I'm currently still off sick, indefinitely. I still don't like taking the steroids, but I'm finding them much less scary than I expected to, and there's much you can do to minimise their side effects.
I would have to say to you, that if you want to maximise your chances of recovering from this condition, you HAVE to respect it and do what's required. That means, taking the steroids (to reduce the inflammation in your body) resting as much as possible, and for a while....giving up the idea that you can continue to live the same busy, stressful, high octane life that being a teacher brings with it. It really isn't possible and not worth the setbacks it will cause if you attempt to do this. Initially I felt very guilty that I wasn't alongside my colleagues looking after key workers children but when 4 of them contracted covid, along with several children, I knew I'd made the right decision! PMR/GCA is not like having a bad cold where you can 'push through ' with some paracetamol and a soak in the bath. You HAVE to be patient, listen to your body, take good advice on board and make informed and sensible choices.
Thank you for your reply, I found it very comforting. I think I know what I need to do but just so scared about being in school at this present time while being on Pred. As much as the school is trying very very hard to keep everyone safe with bubbles etc, two members of staff testing positive in the past week is making me paranoid.
Not sure my school would be as sympathetic as yours if I had to take a fair amount of time off ( I had to fill in a back to work form after taking two hours off for my rhumatology appointment) but I'll cross that bridge if ever I come to it.
You are right about listening to your body, I definitely need to do that more.
I genuinely didn't feel well enough to deal with the fatigue, disturbed sleep and a day's work, somy GP just gave me sick notes every month with just polymyalgia rheumatic written as cause of absence. Eventually the word immunosupressed came into play also. Schools are one of the least covid-safe environments that there are. As an ex nurse, I KNOW that children may not be effected as severely as adults if they contract it, but they definitely can transmit it to adults. Anyone who says otherwise is wrong! You'll be in a very vulnerable position so I would urge you to consider carefully what you're going to do. Being noble will not protect you!
I absolutely agree with everything you've just said. I think it's now time for me to have that conversation with my Executive headteacher tomorrow š¤
Don't forget your employer has a duty of care and must do a personal risk assessment for your situation.
If you are taking the pred at 15mg you should at least fall into the clinically vulnerable group and school must put measures in place for you. That may mean working from home or not pupil facing.
Had I chosen that possible option I would have said "I stood in the road" ...
Hello mugsie1, you are so fortunate to have found this forum, you will have expert and caring advice as you journey on this marathon together with fellow members, and I'm sure many of your fears will be assuaged. It is not a sprint, and we all have a long way to go, but now you are not alone, so wishing you a safe well informed journey, from a fellow happier sufferer, Polly.
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