Ill since Nov 16 query GCA. Managed to go fro 40mg pred to 15mg and around a month ago knee pain and pains in hips, buttocks thighs etc. Told by rheumy nurse to go up to 25. Can't seem to come down from that. I am seeing the rheumatologist on 25th.
GP feels it is PMR and so does Rheumy nurse.
At the moment struggling with how little I can do without pains returning on the same day. At the moment my bottom half is okish. My shoulders become very sore after the smallest of tasks along with my forearms, wrists
And hands. My hands also become very stiff and quite puffy. I am extremely tired but waking during the night for a few hours most nights.. is this familiar to anyone or is there something else going on
Thoughts please
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Elaine-W
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Hi Elaine, poor you. Are you saying that you swooped down from 40 mgs to 15 mgs all at once? My guess as a PMR sufferer only ( huh!) is that is what has caused the trouble and you are in a flare. I wouldn't dream of reducing further until all this settles down. Your symptoms sound very PMR -like, was GCA discounted in the end? I know you can have both together. You must do your part too by resting a lot, not doing anything too strenuous and try to avoid stress and vexatious people. It's kind of bad luck if they are your medical team. Let us know how you get on.
No I reduced over gradually over the last year with lots of problems along the way until I got to 15 and then the muscle problems started but initially with pains in the knees. I had a negative biopsy for GCA and the rheumy alternates between me having it and maybe not. He now wants me to start methotrexate as he said I will be on steroids for a long time if I don't. I only brought six items of washing in today and my shoulders and arms were burning. Is that really too much ?
I went out today and drove for an hour there and an hour back. I wonder if that could have caused it for today to be so bad. Saying that I don't drive a tank or a combine harvester. I have power steering etc xx
Are you still on 25mgs? That does seem an excessive reaction to getting a bit of washing in. I was like that untreated. You don't have head, eye or jaw symptoms?
I really hope they get to the bottom of it soon. Whatever it is, it is very active. Have you had an MRI scan?
I haven't had any scans. I have had a stressful period recently and found it hard to sleep. Not able to switch off etc. It feels like a flare. I can't seem to get below 25mgs. I have been in far less pain today and completely rested.'maybe it is passing. I will use Dorsetlady's reduction plan. The reduction advised by the rheumy of 2.5 is too much for me whether it is two weekly which I tried or monthly. My body just won't have it. I am grateful for the wise words. They can keep methotrexate too. This illness has taken enough from me without volunteering for more aggro without any guarantee of success. Thank you once again xx
"He now wants me to start methotrexate as he said I will be on steroids for a long time if I don't"
There is no evidence at all that methotrexate will shorten your journey on pred. It MAY allow you to manage with a lower dose of pred but even that isn't certain.
But this doesn't sound like "just" PMR to me. Have they ever measured your CK (creatine kinase), a muscle enzyme?
This has not been mentioned to me. I am keen to find out if there is something that has been missed so I will mention it thank you. It seems that each time I attempt to reduce the steroids as the rheumy wants, by body bites back. Not straight away but around the ten day mark.
I think with PMR it's more common to loosen up after the initial painful activity and find later movements, as for example you bring in the wash, easier, until the next time you've been inactive for a while. This is how it is for me, anyway. Would be interested to hear how others are before I jump in and ask if any other diagnosis has been suggested. Not to rule out GCA/PMR, but unfortunately we can have more than one thing.
I'm so sorry to hear you have so much pain. The only thing I have to add is that my PMR flared as bursitis and your burning shoulder pain sounds similar. I wondered at the time, if driving was too much.
It's a good thing that your rheumatology appointment is on 25th. In the meantime, try to do as little as possible - if that is possible!
Take care.
Hello Elaine. I was diagnosed with PMR/GCA Nov 16. My consultant got me to reduce far too quickly and had 2 flares. I have been on 30mg for nearly 5 months. Reading your post is exactly how I felt. I am only just trying to reduce now following Dorset Lady's plan and only 1.5mg at a time. Was able to go private at the Bath Clinic and she got it. See her again Nov and then a different Consultand Feb back with NHS. 20mg was not enough for me to keep inflammation under control. Good luck with it.
It is a relief to find someone else with the same presentation as me. I came down with a stinking cold on Monday and been full of it since so maybe that had not helped. You know what these conditions are like. You question constantly and turn things over. Now maybe that's why, could it be because, is it because i did this or should I have said no to that? Sometimes it is just becuse it is. I have the rheumatologist on 25th and becoming slightly nervous about walking in to him with no reduction to celebrate. It's tough. I can't help it. I will wait patiently to see what he has to say and then respond. One day at a time. I am not going to overthink it or project how it will go............
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