Third day on Predisilone and worse than ever

I am 68 years-old and was diagnosed with PMR almost 3 months ago.  In the first three weeks I tried 11, 15, 17 and 25 mg prednisolone but soon ended up on 24 mg, split 17/7 (8 am and pm).  Splitting the dose gave me a full 24 hours relief instead of just 9 hours, beginning in the late afternoon.  If the dose is only slightly low, inflammation seems to build slowly, day by day!  

Two months later, I'm on a 12/6 split and I have been reducing either the morning or evening dose depending on the timing of residual PMR symptoms.  I have tapered at almost 1 mg a week.  For the last 6 weeks, I have been more or less symptom free. 

I have full control of my tapering and at the first hint of PMR returning - usually in the outer shoulders - I instantly up the dose by 1 mg (weighing broken 25 mg tablets myself).  I would dread following some tapering regime imposed by a GP.

Initially, an inadequate dose of prednisolone gave some relief in just 12 hours but, even on an adequate dose of 24 mg, inflammation took a month to recede.  I wonder what would happen on a higher dose.

I don't have exhaustion either but my head sometimes felt strange in the first month or so.  I have never had knee pain.  

Hi all I was diagnosed with pmr by my GP nearly 3 weeks ago. I took early retirement in October with plans to landscape my new garden etc.very active, gym 4 days a week swimming etc. I’d notice some stiffness in my legs in mid September esp. getting in out of car but put this down to too much exercise!  One week after I retired I noticed aches in both arms again put this down to exercise. But 2 weeks after that I was struggling to get out of a chair, couldn’t turn in bed as shoulders hurt and couldn’t lift duvet to get out of bed. Mid Nov went to see GP she ordered some blood tests but at that stage also thought it might be an injury, but she wrote “exclude pmr” on the test form, first time I’d heard of it. I was told all bloods fine a week later but the stiffness and aches got worse so I went back to see GP in mid December. I asked her about pmr she said it could be but was concerned all bloods except CRP were fine (noone had mentioned raised CRP before) She gave painkillers then at 830 that Evening she rang me to say she’d been reading up on the condition and the raised CRP despite my age (I too was told too young at 56) with all the symptoms suggest pmr and she wanted to try prednisolone. I started 15mg on 18 dec I was slightly disappointed not to experience the miracle you read about but within 5 days I had improved by at least 70% with no stiffness and only mild muscle pain if I moved at night. I took neproxen at night until Christmas Day I don’t take it now so that may have helped with aches. On most days I have vastly improved symptoms with only mild aches, most nights I sleep ok and no stiffness in morning though arms do ache sometimes but some days are better than others. . On some days there are some aches in the morning but a couple of hours after taking the Pred they’ve gone. If I do too much I seem to pay for it the next day yesterday I disconnected the Xmas lights which meant twisting under a hedge to reach the plug. This morning my rt shoulder was painfully stiff, left less so and legs mildly ached. Took Pred at 7am and By 12 today pain free again. Seeing GP again on Monday I personally don’t think the 15mg is lasting long enough and I know I need to pace myself and be patient which I do find a challenge. From my complete newbie experience I think the worse thing in all the guidance is raising the expectation of a near miracle in a matter of days on prednisone, worried me at first too. 

Thanks all. Sorry for long post but hopefully sharing experience helps. I’m now at 3 weeks on 15mg prednisolone. The response to this has been good but not complete in that I still have stiffness on some days in the morning and yesterday and today more pronounced though today better than yesterday. Within 2 or 3 hours of taking Pred the stiffness and any aches are gone and this lasts the rest of the day, with only occasional days where mild aches return in the evening. I’ve not needed any additional pain relief though at all in last 2 weeks( not that it made much difference). The other thing I noticed was that I am still as strong as before it’s only the stiffness that prevents me moving, I’ve not lost any weight either quite the reverse put on half a stone because of lack of exercise!

Jennifer I also find that walking helps and in fact that helped before the prednisolone was started. I haven’t tried any natural remedies and would be concerned about taking something that might interact with the Pred in some way I haven’t noticed any foods either making a difference. I do take vit D as advised by an endocrinologist years ago as I also have hypothyroidism and vitiligo and so have been warned many times that I have an increased risk of other auto immune conditions. So while I still can’t be 100% certain this is pmr (although my symptoms are a good match) if it isn’t then it’s likely to be another auto immune inflammatory arthritis. But overall I am certainly more than 70% improved on prednisolone, and this was the case within 5 days, before taking it the stiffness would last most of the morning, aches would return by evening and I couldn’t sleep at all without other pain killers that only had a marginal response if any. Like Eileen and thinking back I did have an initial really good response to the prednisolone, which I also took the first dose in the pharmacy but mine was at 2.0pm. While I still had some stiffness in my arms I did notice the stiffness in my legs had gone the next morning, which was my first symptom, so much so that I repeatedly got in and out of the car to prove I wasn’t imagining it. On day 3 I had no stiffness or pain in my arms and did a little gardening but that night I had aches in my arms again. By day 4 though I no longer had the stiffness or aches but as I say some days they return especially if I over do things. The other thing that hasn’t really resolved is the pain I get if I reach backwards say to put on a coat which persists. Overall though a significant improvement. As I’m seeing the GP again tomorrow I will ask whether she thinks the dose is not quite high enough to last 24 hours or about splitting the dose (which I may try anyway). Current NHS waiting list for rheumatologist is 18 weeks so not waiting for that, and not really hopeful that will help anyway. I hope you find that the Pred starts relieving your symptoms soon.