I have been at 6 mg for a month now. I know I had done really well having started on 15mg in February this year. I thought things would settle but I am definitely not as well as I had been.
I have stiffness mainly in my pelvic area and my mobility is definitely worse. So i know that getting down to 6 mgs was a step too far.
I could stand the pain but I think it would be a ridiculous thing to do and I am worried that if I don't increase my steroids I could be facing a full blown flare!
I have taken 7 mgs this morning and would be grateful for any advice. I was planning to go back to 7mgs and stay there for a month before trying to reduce again.
Thanks
Julie
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JulieR2
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There are 2 ways to approach this - either go up 1mg as you have, give it a week to see if it works, if then if it doesn't up another mg until you get relief. Or bite the bullet go up to 10mg get it under control quickly - you may then be able to drop back down - to 8mg maybe, not 6mg - that's obviously too low.
It really depends how long you've had problems, if it only a few days the 1mg work my work, but if it's been building up for some weeks then the 10mg option is better.
You have reduced quickly, and even if you are one of the lucky ones whose PMR only last 2 years you're still only less than half way through, so slow up on the reductions.
It's not a race, so long as the PMR is active, you need the Pred - simple as!
Hi Julie, I just read your post, and it seems you have answered your own question, in that you have reduced a bit too far.
This snarky PMR gets pretty aggressive when we take away too much prednisone at any one time.
Dorset Lady laid it out pretty clearly...kick up to 10 mg prednisone and have a few days of relief at that level... heck! Take a few weeks and really grab hold of the inflammation causing your pain.
Pmr will extinguish in its own time...not the time frame you try to impose. Our goal is to manage the pain so we have quality of life while we process through this illness .
Thanks Jerri you are so right! I had really breezed through up until now after initial treatment but this weekend has reminded me how far I had come and how quickly you can go backwards when you are riding high!
All been said - if you ignore it the pain won't just go away, the left-over inflammation will just add up. Like a dripping tap filling a bucket, it will eventually overflow...
Thanks I think your point about ignoring the pain is really important! I know it's obvious when you think about it but I thought it would settle. In fact it did for a little while but i guess I am learning the rules or the lack of rules that this disease has! So 7 mgs today and I won't hesistate to go to 10 if it doesn't improve!
Pain that appears immediately you change dose is often steroid withdrawal pain but it typically improves over the following week or so. Of course, it is quite possible to have steroid withdrawal that settles and then a bit later the inflammation mounts up enough to cause symptoms. But basically - anything that gets worse is likely to be a incipient flare.
I had a good look at your graph and the symptoms I have are very similar. Can you just confirm I see you went up to 10/9 mgs for two months did you then reduce down again using the dead slow stop method?? Just preparing in case 7 doesn't work! I am off on holiday in Dec again and learnt last time that reductions and holidays don't mix
Julie, it's all been said by the others, but if you haven't already seen it, have a look at my graph and account of my flare (click on my name to see the posts). I gaily carried on reducing to 4mg while experiencing pain in my joints from that 'dripping tap' and have had to spend 2 months at 10mg / 9mg to clear the 'bucketful' of inflammation! If you can nip this in the bud with a higher dose, you might be able to reduce more quickly to the lowest dose that controls your symptoms.
PS I have more dots to put on my graphs - ESR and CRP now down in normal range! I'll put a post up soon to update it all.
I'm down to 9mg from June at 20mg .Since joining group getting scared of a flare as going lower. My Gp advice was 1mg every 2 weeks since being on 15mg. All very new to this and find it all so confusing.
1mg every 2 weeks below 10mg is a bit fast. 0.5mg would be better - and even better would be 0.5mg per month.
But just be watchful and if you have any sign of a return of symptoms stop reducing and go back to the previous dose. Wait a month and try 0.5mg the next time. It may be your dose is only 2 or 3mg - and you can reduce easily while well above "your" dose. Don't worry.
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