Apologies for re-asking a common question but I’m struggling to find old posts! A classic case of a stupid user I’m afraid.
I’m 47 and was diagnosed with PMR in December 2017 and have been on 20mg of Pred since then. After my most recent blood tests and review with my GP we have just reduced to 15mg. (This is only the second day of 15mg). I’ve woken up this morning feeling sore and stiff and a little bit ‘off’. My question is could this just be coincidence or does anyone think the Pred has been reduced by too much?
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GingerK
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This may be withdrawal. I have only GCA but can feel achey and flu like with withdrawal which kicks in on day 1-4 or sometimes 5. At that dose level I dropped in 2.5mg steps which made it easier but still noticeable. A 5mg drop at that dose level made me feel awful.
Thank you for your response, SnazzyD. If it is withdrawal how long does it normally last? I know it could be different for everyone but some sort of idea would be useful so I can either hang on or up the dose again!!
A few days, though sometimes the tiredness and fuzzy head persists for 7-10 days. I’m sure others will reply also so you can get a range of experiences.
It sounds like steroid withdrawal if it happened within a couple of days. It's a pertinent question. The first couple of times I dropped by 1mg from 15mg (my pre forum days) I was scared the pain was coming back and went back up. Now I know that for a few days my shoulder will hurt and I will feel more fatigued and blurgh for a few days then it calms. My sign that the drop is too much or quick usually starts after about 12 to 14 days when my thighs and legs start to burn and stop being so effective. For steroid withdrawal a couple of painkillers helped .
My initial reaction is that the reduction is too big for two reasons. Firstly you've been taking 20mg of Pred for six months so your adrenals, hypothalmus and pituitary glands (HPA axis) have become very "sleepy". For this reason you may be experiencing steroid withdrawal. This has it's own issues. But also you have no idea at this stage what your optimum dose of Pred is for this stage of your illness because this is the first time you have reduced the dose. It is commonly accepted that reductions should be a maximum of 10%. Going from 20 to 15 is a 25% reduction!! A taper to 17.5mg is more usual. You may need to gently remind your GP that reducing steroids for PMR/GCA is not the same protocol as reducing for patients with asthma or for inflammatory bowel disease !!! Were your blood results "normal" or just reduced from last time? Not everyone has symptoms which correlate with the ESR and CRP values.
This is a real dilemma for so many of us and it's hard to give you the right answer. I think a call to the GP may be in order if you continue to feel "off".
Thank you PMRnewbie2017. My bloods were normal (PV was normal / CRP has never been raised). I did take a couple of paracetamol which seemed to help. I’ll see how I get on in the next few days.
As others have said most likely Pred withdrawal, usually comes in first day after a reduction, and I found it lasted a few days - general feeling of Yuck! Bit like prementral tension in my case, but after a few days once body used to new dose - fine.
But you have reduced at lot - 25% of previous dose, whereas 10% is usual recommendation so you may be heading for a flare as well - sorry.
If it doesn’t go within 4-5 days, then you might be wise to go up to 17.5mg. In future do smaller tapers.
Thank you DorsetLady, I hope there’s not a flare in the offing 😕. I did question the amount of reduction with the GP, he said it’s not too big a step down at this level but will need to smaller as the dose gets lower. I’m starting to think he was mistaken 😂
bet he doesn't have PMR and I bet he has never been on 20mg of pred for 6 months. Yes, it would be fine if you had dropped from 20 to 15 after just a few weeks. I'm not in the least surprised at your experience - even if he is!!
I think it is probably steroid withdrawal rheumatism symptoms - you'd been at 20 for quite a time and then did a 25% drop which is rather higher than the 10% recommended by top experts.
If it improves over the next few days that will confirm it. If it gets worse then it suggests the dose is now too low. How long it lasts depends on the person - for some it is just a day or two, for others it can be a couple of weeks. And doing a bit less than usual probably helps get over it...
Thank you PMRpro. I'll definitely be keeping a close eye on what's going on with my symptoms. Although this experience is not great, at least I will now feel justified in fighting my corner when it comes to my next review with the GP!
If you get through this taper okay in the end, do try not to drop by more than 1 mg at a time from now on. Your doctor may push for another 5 mg drop, or perhaps 2.5. In my experience a 1 mg drop is much easier, less likely to cause withdrawal symptoms. Even if things go swimmingly to 10 mg at that point it's very wise to switch to a slow taper plan. As PMRpro says, "It isn't slow if it works".
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