Really love this forum thanks so much. I have PMG and have reduced from 20mg to 11mg each time I reduce I am sure and tired for a well even doing it slow and stepped up and down as suggested here. Normally after a few days it levels out but with each reduction since 13mg I am left with more symptoms. Now at 11 I have a lot of soreness and periods of being really tired. If pre diagnosis pain was 10 or of 10 I'd be at a 3 now. Am I aiming for no pain, or lowest level to function with reasonable comfort.
I do a lot of sport which is really important to me and I've done well to mostly keep it up. I have also stopped ed gagging weight since being down to this level.
On top of this I am caring for my partner who has seriously damaged his back and can barely walk so I have to do the extra chores etc. He will come right eventually.
The doctor says reduce reduce, if I stay on this dose will the symptoms stay at this level or eventually improve or do I go back up to the almost pain free level for a while then try reducing again?
Thanks in advance for your advice.
As a PS I live in Nz and we are covid free, can move about freely and normally and look forward to a normal Xmas with friends and family. My thoughts are with those with less freedom while also coping with this debilitating illness.
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Renesch
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I would have said the previous few days of uncomfortableness was due to steroid withdrawal - but now you’ve gone below dose required.
No matter what the doctor says, you are actually reducing to find the LOWEST level that gives you the same relief that initial dose did.
So if you were okay at 13mg, go back to that initially and try it for a week to 10 days .
If you’re lucky it might be enough, if not then you might need to go up to 15mg or 16mg. Usual recommendation to catch a flare is to add 5mg to the dose you last felt okay - but sometimes you can get away with a bit lower. You can only try and see what happens.
If 13mg is okay, stay there for 3-4 weeks. If you need to go higher, stay at whatever dose works for 2 weeks, then drop back down to 13mg and do as already suggested.
Not sure how often you reduce, but every 4 weeks is good, and don’t reduce if you have symptoms - they will only get worse.
Your PMR us not being helped by the extra stress in coping with your partner, but hopefully that will ease.
Exercise is good, but not too much (i.e. pre PMR levels) nor too repetitive, and give your muscle longer to recuperate- they are less resilient with PMR.
Everything DL already said - and just wanted to point out that it may well be purely because of the extra stress of your partner being unwell and you having more to do. I speak from experience!! PMR thrives on stress.
I have learnt from bitter experience if you are having pain do not contemplate any reduction. Take it easy for a while and up the dose to when you were last comfortable. You will find it easier and less painful than trying to fight the PMR, as the PMR will win.
They’ve said it all. Thank you for your good wishes. I envy you your leader, she’s great! Have a happy one, Try to have some rest days - this is a significant illness!
Thank you for your letter. I am in the same position and have been helped by your replies. I was fine on 13mg but just reducing to 12 mg has got my shoulder pain back - not too bad but didn’t know wether to go up or stay and hope it will all settle down. Best of luck. I’ll give it a few more days. 🤞🤞🤞
Hi Renesch, I hear you. I have PMR/GCA and began at 40mg. almost three years ago. I’m currently stuck at 13 and have been here for 5 months now! In June I was down to 9 mg. but flared. Went back to 13 and every time I tried to reduce I got pain in various places. Lots of stress, from family and from wildfires and and a series of power blackouts because of them. ( I live in California). I lost my rheumatologist in June and have been relying on my GP for pred prescriptions. She doesn’t know a lot about PMR/GCA.
I know what it’s like to reduce and then have pain and have try to figure out what’s going on and what’s causing it and what to do! Especially when you have to fight with your doctor.
Luckily we have this forum and very knowledgeable people to support us.
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