I only found this forum this week. I have had PMR (they think) for about a year. Had dozens of tests, scans etc as the rheumatologist said I was too young to have PMR (I am 54). Difficult to get enough time with my GP.
On 7.5 mg pred but have stinging sensation in my shoulders, pain in my knees and can’t lift my arms properly. Put on loads of weight with the Pred so that isn’t helping.
I have ploughed through at work trying not to take time off but it is difficult and makes me quite weepy.
How has everyone else managed work?
Written by
LisaMun
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I just posted this on another thread and thought it might help you. You have been started on too low a dose, it should be 15mg or 20mg. 7.5mg is useless at this stage.
Follow the link below and read, download and if necessary, which I think it is, take someone with you to another visit to your GP and start to educate him/her fast. YOur GP has access to these guidelines via the BSR and NHS website. There is no excuse for starting you too low.
You also need to talk to your manager as work and explain you have an auto-immune illness. If you have a problem email me on this site.
PMR comes when it wants and goes when it wants, no known cause or cure yet, but much more research than was being done 12 years ago.
Pred is to enable you to live as pain free as possible, not life threatening, but not easy to deal with until you get a handle on it.
Go to the PMR GCA UK website and read everything you can, gain knowledge.
You have made a good start by finding this forum.
Go here and read and download (if you want to) LINK HERE
the BSR Guidelines to the Diagnosis and Treatment of PMR. pmr-gca-northeast.org.uk/us...
PS: You are not all that unusual age wise. It is only 4 years since we made them listen and the age range came down to 50................before it was 60 onwards.
We do know people as young as 27................
Come back and ask away...............that is what we are here for..................Knowledge is Power.
Thanks so much I felt really alone with this and it is great hearing everyone’s stories. They did actually start me at 15mg but I was still in pain so they thought maybe it isn’t PMR. Anyway I have got gradually down to 7.5mg but still
Uncomfortable and the description of the lady with concrete legs is me some days.
You have all made me realise that this is for me to manage and my GP doesn’t have the answers. I have had a rough week but finding this forum has really helped me feel more positive. Doesn’t help I am going through menopause at the same time
No menopause at the same doesn't help at all. I was 55 when I first had symptoms and DX at 56. Just about caused the end.
They should have bumped you to 20mg. Someone posted in the last couple of days that she took the guidelines to her Dr who was saying the same things as your and the guideline say between 15 and 25mg. If it's not enough pred it probably takes longer to get that 70% (plus) relief. My Dr left me for 2 weeks initially and fortunately for me 15mg worked quickly. Dr needs to give it a chance.
I suffer from concrete legs too. Remember your GP is not the one with PMR. You have an illness and need to recognise that. The pred just helps the pain. PMR is life changing so you need to start to pamper yourself.
I was 55 when diagnosed. My gp was pretty certain even without blood tests. Mind you it took over two years and numerous visits to virtually every gp in the practice before I saw our senior gp.
Really glad you have found us and you are not alone in feeling stressed. We all feel like that at first.x
Oh and people find working extremely difficult, especially if pred not enough. If you can just take some time to acclimatise. That way you increase your chances of continuing to work.
Weight control: a low good carb, high good fat diet is the way to go. There are lots of discussion of low carb diet. If you get chance click posts at the top of this message, a search box will appear and you can type low carb in. It should bring up lots of posts, you can gather question together then so can ask more. I have lost over 2 stones since I took myself in hand 6 to 8 weeks in. It's isn't like dieting if you do it properly.
These are the guidelines mentioned with the 12.5 to 25mg range of starting dose - they should use the lowest effective dose, in your case that would have been above 15mg:
I'm 51 and share your concerns. My PMR was diagnosed pretty much on first GP visit but I'm really nagging for bone scans (awaiting to hear from hospital). All my bloods normal.
Most of the pain (if I don't try and overdo things) is gone, but I do get v tired and 'cement legs'.
But work is a concern too.
If you are employed, are there regulations that your employer should help you do fewer hours or less physical work? communication is key, I think. And if a boss knows more about someone's condition it may help. especially as there is a very high likelihood you will improve and may return to full capacity. But I guess everyone's situation is different and some may not have an empathetic boss.
I'm self employed and work from home which has the advantages of flexible time...but there are times i have to travel for work and I've found that really hard. I worked last weekend away and have only just 'recovered' now. I have family commitments both with children and elderly relatives so I don't know where I can have some slack.
Work is important for financial reasons and because I love it.
I'm trying to prioritise and learn to say no to things.
Someone suggested having a midday nap, which seems a good energy boost idea.
Hope you manage to find a way to have some way work can change to accommodate your illness.
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