I posted 17 days ago after developing awful pains. Started
With my knees and then, burning shoulders, neck,sore hips lower back , thighs, and upper arms. So much so I didn't want to turn the page on my kindle. I emailed the rheumy nurse at the local hospital and she agreed to see me. I have been treated for GCA since November last year and managed to get to 15mgs. Was suddenly stopped HRT by GP and the pains all started up. She said it sounds like PMR. She spoke to the Rheumy who was doing a clinic at another hospital and came back with a leaflet about Methotrexate. She said they both agreed I should go on it as without it I will be on steroids for a very long term, whether it is PMR or it isn't. Each time I get a letter from the hospital it mentions a diagnosis of GCA with a ?. If they aren't sure I have GCA , can it really be such a coincidence that a can now have PMR? And if I don't have either then what am I on steroids for? The further
I go down this road the more confused I become...........
Written by
Elaine-W
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PMR can be a symptom of GCA and I assume you didn't have a positive TAB so they can only say query GCA, they have no proof.
I think last time I said you should ask to go back on your HRT - once cause of PMR-type pain is hormonal imbalances and that is possibly what happened when your GP stopped the HRT so suddenly.
There is no guarantee that methotrexate will make any difference in PMR or GCA - it may do, but even if it does it is unlikely to get you off pred altogether any earlier than without it. And there is no way they can forecast how long you will be on pred - only the autoimmune disorder that causes the symptoms governs that and no-one can say how long it will last.
I saw a partner at the doctor surgery who put me back on the HRT. The rheumy told me to go to 25Mg pred on Tuesday last week. I have had my best day today. I wake up so stiff and achey and it eases over the day. My muscles quickly become fatigued and hurt though, starting with my neck. My legs begin to feel weak too. By the evening the pains are back and I am stiff again. This has felt like a big downer when I was doing so well.
Give it a week and see how you are - and then possibly consider splitting the dose to ease the morning problem. And REST!!!! Very gentle exercise - nothing more than walking and, if you can get it, hydrotherapy.
Thank you I will most certainly rest. My body won't let me do much else at the moment. I am hopeful this relief may last and I won't push for anything more at the moment. Yes I increased from 15mg to 25 before the pain has begun to ease but I actually don't care. I couldn't function physically and was mentally wrecked by it. Hydrotherapy I will try to explore. Thank you
I have stopped fighting it and now factor in an afternoon nap. This gives me an evening and doesn't spoil my night sleep. When I can that is, which will be much more often now Theo has flown away - the best pain medication I ever had.
Cue for a song. My 2 year old grandson who I bore on about on here because he is the love of my life and has gone with his family to Australia for at least a year. I looked after him for most of his life while mummy worked/ had a prem baby etc.
Pity he's not available on prescription so much help with energy levels and pain relief.
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