Pred not working??

[Underlee]

Hi all, would like some advice please. I've posted a few times before regarding my suspected PMR (even though I'm 45 yrs old). Last week I was given the coated Pred to take (after having non coated for a few weeks). I'm on 30mg per day. From what I understand the   coated Pred takes longer to enter the bloodstream so I have been experimenting a little on when its best to take it. The night before last I took 20mg at 9pm as I figured that I normally wake in pain about 2-3am. This seemed to work very well, I woke up at 3am as I had a slight night sweat but there was no pain in my legs (just stiffness). I took the remaining Pred at 3.15am and went back to sleep and woke again at 7am feeling a little stiff but generally ok. As the dosage and time seemed to work quite well I tried the same again last night. However, this time round I coulf not get to sleep until 2am and was in pain up to that point. I woke up again in pain at 4am and took the remaining 10mg Pred and managed to sleep until 6am. I don't understand how the two nights can differ so much, it's as though the Pred I took at 9pm last night had zero effect. Does anybody have any thoughts on this? Also I'd be interested to hear what to recommend for pain relief. I've been taking paracetamol and Oromorph but it's not always that effective. Thanks for your comments. 

[PMRpro Ambassador]

It may have been that the first night there wasn't any built-up inflammation so you were still OK, by the second night the bucket was fuller and it spilled over, so to speak. A flare rarely shows up immediately, it takes a few days.

Plus, since you have gut problems I have to say I'd wonder if you are absorbing the enteric coated properly - it was found to be a problem in Crohns patients I think and that was part of the evidence that enteric coated wasn't as reliable as the plain so shouldn't be used unless essential. That would be shown if you take ordinary and it works as normal.

[DorsetLady PMRGCAuk volunteer]

Hi Underlee,

Have only ever taken the uncoated tablets so can't comment on the reaction of coated ones. However, if you are taking 20mg at night that may be having an influence on your sleep patterns, lots of people have problems initially. As you are still experimenting, perhaps you could try 15mg at night, 15mg in morning - or have you already done that? 

As for pain, if it is PMR then only Pred will help, I was undiagnosed for 18 months and tried every painkiller going - nothing worked! 

I know you had problems getting diagnosed in the 1st place, and as you are having so many problems, it begs the question - have you got just got PMR, or is something else muddying the waters as well as your gut troubles. 

Unfortunately, if things don't improve, then think you need to go back to doctors. 

Sorry, can't be more helpful. 

[Celtic PMRGCAuk volunteer]

Lee, I can so understand you experimenting with the coated/uncoated/timings/doses etc in an effort to find an answer to your pain, but I wonder about the body getting confused and finding it difficult to adapt to so many changes especially in these early days of treatment.   Once all the results of your many investigations are in, hopefully you will at least have a definitive diagnosis and a relevant treatment plan.  

Meanwhile, if it were me, rather than taking as high a dose as 20mg at night which is very likely to keep you awake, I would be inclined to take the larger portion of daily steroid dose early in the morning and a smaller portion late at night - say, a two-thirds split.

As for pain relief, if it is PMR then there is rarely much relief from anything other than Prednisolone medication-wise.  During my undiagnosed days, I relied on an electric heat pad to help with my worst areas of pain.  A TENS machine was also recommended by the hospital but whilst this may work for some, it didn't do much for me.

Roll-on the latest tests and results.  Pred may have its downsides but I so sympathise and empathise with you as you go through this frustrating period of non-diagnosis - the very worst stage.....it can only get better, Lee, so stay positive for just a little longer.  

[PMRpro Ambassador in reply to Celtic]

I'm not sure that taking enteric coated at night would disturb sleep - it takes several hours to get through the gut before being absorbed. Totally agree with you about plain white tablets though.

[Underlee]

Thanks for your comments ladies.i managed to get a few hours sleep this morning and have just woken up now. I'm stiff but there is no pain which is a good sign and I'm feeling better.